I first reported a rash on my arms to my local GP surgery 2 and a half years before I was finally diagnosed with Stage 4 Hodgkin's Lymphoma. I was told over and over again that it was eczema or that I was allergic to sunlight! Even the dermatologist didn't pick it up! Eventually I developed lumps on my legs called Erythema Nodosum, which prompted a chest X-ray. The results of the chest X-ray revealed a shadow on my lungs. The CT scan revealed enlarged lymph nodes in my chest and neck, the biopsy revealed Hodgkin's Lymphoma and the PET scan revealed that I was Stage 4 and that the cancer had spread to the edge of my lungs!! I had 6 months left to live before I started chemotherapy, and I'm just coming to the end of my treatment. Thank you for sharing your story. It's shocking how these things are not picked up soon enough. We need more stories like this to bring about positive change.
I hope you will recover from this Rachel. Im feeling all of the symptoms but dont have the capability to consult a doctor. I will be praying for your fast recovery
I'm so GLAD that you finally got answers! My husband was first diagnosed with Follicular Lymphoma when he was 55 years old. He had a lump just in front of his right ear. The dr performed surgery and as soon as he opened his face up he saw that it was cancer. So they did a biopsy of what they removed at he was told it was Follicular Lymphoma. They did a full body scan and said at that time they were just going to wait and see because they didn't want to start cancer treatment until it started to be aggressive. In no time it had changed to aggressive B-cell and told him he had to have treatment right away. His treatment was "CHOP". He had to be hospitalized because the treatment was so brutal. They also wanted him to have a stem cell transplant. He said no. My husband survived the treatment and was told he was in remission. Now my husband is 78 years old and 3 years ago he was diagnosed with F. L. again. And they told him he probably had it for at least 3 years. His symptoms started out as an annoying cough that wasn't productive at all. He was in the middle of changing doctors so here in America you go to Urgent care and are seen by whatever doctor is on duty at the time. They kept diagnosing him with pneumonia and would give him meds and he would go home. After the 4th time of going to Urgent Care, I went with him and told the doctor that he doesn't have pneumonia which is what he tried to tell us he had...again. I said he needs to see a specialist, something is wrong! The doctor said, well an Urgent Care doctor really doesn't have any pull with specialists. I said please try! So he stood there and typed a note to a pulmonologist. My husband was finally contacted by a Pulmonologist's office and an appointment was made. As soon as he pulled up his xrays he said no, he's never had pneumonia. He said I bet your Follicular Lymphoma is back. He had 2 large tumors right behind his esophagus and had closed off his right lung. My husband was NEVER told that there isn't really a cure for FL and that you will have to keep going back for "maintenance" when the cancer starts to grow again. His treatment was Retuximab and Revlimid for the last 3 years. He is finished with his treatment and is doing great. We have to trust ourselves and realize that we know our bodies. When something feels wrong we have to be insistent with these doctors. !
I had a swollen lymph node on my inner thigh. Was told as we got older we got bumps. After a year I went to another doctor who did biopsy and found my Follicular Lymphoma which like yours, was a watch and see. Also turned into B Lymphoma with same R Chop like him. Mine is also back after 4 years on my spleen. I also have had to be more forceful then I have ever been in my life!! On my 6 mo checkups prior my oncologist never laid a single finger on my body. Just the same questions every visit. Luckily I had a CT scan on my 6 mo visit. I have lost so much respect for all Dr.
@@pattylyman7907 we feel the same about drs. My husband developed an infection in his lungs and he said its just a virus. Well, I talked to our primary dr and said I wasn't accepting that diagnosis..viruses don't last over a year. She sent us to a Pulmonologist and he did a biopsy and found it was a bacterial infection that you get from Retuximab. A bacteria that he will never fully get rid. The bacteria is encapsulated so its difficult for the antibiotic to fully clear the infection. I don't have a problem with telling these drs what I think, but they have pushed us to that point. I will be praying for you.
I could really relate with your story. I have NonHodgkin Lymphoma, Mantle Cell, which was diagnosed in 2015. Our medical care in the States has become a nightmare. I’m mostly ignored by my GP and Rheumatologist. My cancer isn’t curable and now I am 71 years old. I see the difference in how I’m treated. Each doctor wants to send me to a specialist for every little problem. I have become a different person. I will see my oncologist in a couple of weeks and am expecting another CT scan. I pray you have a long life and can beat this insidious disease. It’s a journey and it’s not easy. 😊🙏🌸
@@teamtrioauto5474 yes mantle cell is definitely treatable- it affects the large B-cell, which is also treatable. That was what I had, stage 2. Under my sternum, wrapped around my neck, beyond coughing: suffocation by strangulation from my masses. I have been clear for 13 years now.
Lisa, thank you for sharing your experience here. If you'd like to share more, please feel free to reach out to our team: alexis@thepatientstory.com. Thank you.
My mum was misdiagnosed for years too, doctors giving her pills, eye drops, test after test only to tell her that there was nothing wrong with her..... 6 weeks later after getting a second opinion from a different doctor she was given 6 months to live because they found she had pancreatic cancer. She died exactly 6 months later Christmas night. NEVER stop looking for opnions, listen to your body and don't take no for an answer until you get to the root cause. You must advocate for yourself, you have everything to lose. I'm so happy for Leanne that she finally got her diagnosis and treatment and that her recovery will be flawless with a very long and healthy life ahead of her.
I can relate to this - I have had worrisome symptoms similar to that of pancreatic disease...but no CT scan has ever been ordered...just ultraound which didn't show the pancreas clearly..so I'm told that nothing showed up. So, what do you do! Just wait until things get worse...yes...in Canada that is what is happening. You can't see your doctor for more than one symptom, so, which symptom do you pick? It is so sad, and very dangerous...
The problem is people shouldn't have to get opinion after opinion. Doctors should just do their job. Fatigue is one of the biggest symptoms in blood disorders and along with an enlarged spleen should have rung alarm bells. I am a Registered Nurse and knew this so why could they not pick it up. It is not as though she had some rare one in a million disease. Doctors are too flippant and dismissive.
@annekennedy8127 I am Canadian and have had horrible symptoms for 2.5 years now and I stopped going to my Dr. because there are too many symptoms and he only allows me to address one.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
@@annekennedy8127 - NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
It’s taken me 5 years to finally get my diagnose. I tried to tell them, the Doctors. Over and over. I finally had a bronchoscopy and biopsy. And I was right. Cancer. It’s now spread to my sinus and brain. I just sent my doctor an email saying, I told you. 😞
That’s a horrible situation they’ve thrust you into. No consequences for them, you bear their passive aggressive attitude results. I am so very sorry you had to go through that long, gaslighting experience. 🙏❤️🙏For you.💔💔💔💔
Thank God she finally had someone actually LISTEN to her & study her health history. If I got the diagnosis after all of that I would be mad as hell (women get that attitude way too often). I would go back to every doc & beg them to not blow off a patient like me ever again!
This makes me so tearful. Thank you for sharing your story. My father recently passed from Stage 4 cancer. He had been going to doctor after doctor and it was not detected.
Very articulate well spoken thank you Leanne. Im so sorry to hear how difficult for you to finally be diagnosed. I’m so glad the GP was empathetic and apologized I believe you taught him more then medical school textbooks could ever had.
The medical student or intern who was so pivotal in getting you correctly diagnosed is a fine example of someone who sees the whole patient, researches their history and findings and then hypotheses possible diagnoses. She saved your life and will go on to help so many others. I’m so glad she was there when you desperately needed her!
@@a.rosesrbleu9580 can you please read what I typed above I don’t know how to spell or punctuate and I don’t know anything about any of this this can you please see what I typed and what to do?
I had the coughing for a couple of years. I stopped eating in front of anyone because I’d start coughing and it was embarrassing. I finally had a MRI because of tailbone pain, and it showed Leukemia. It’s so easy to rationalize away symptoms. Hope you’re doing well.🌸
😳😳😳 OH MY GOD !!! I HAVE BEEN EXPERIENCING THE TAILBONE PAIN for 5 months along with the 2.6 years of coughing, flank pain, inguinal pain from HUGE Lymph nodes, neck completely immobile from rock hard muscles and ENLARGED LYMPH NODES, not able to sit AT ALL because my legs go numb and have EXTREME PAIN in thighs, knees, calves, feet. Then unable to stand up after 10 minutes of sitting because hip pain. Cannot lay on back with phone as my arms go numb and start ACHING with shooting pain to my forearms, hands and fingers. What imaging study should I request for the tailbone pain/coughing and what SPECIALIST should I seek for treatment if there is such a thing ? 💜🙏🤗 I hope you are in a treatment plan and are surrounded by loving compassionate supportive people. 🙏 🧡
I have tailbone pain. I went to my dr about it. Doubt they even put it in my medical notes for that day. Still have the problem on and off. Don't know how to get them to listen to me. Have also complained about how my arms hurt when I put them up over my head.
It is very rare to find a good doctor these days. I had balance issues, falling over, headaches and I went to five different doctors, emergency room and a specialist and was told to lose a couple of kilos, it was psychological and everything in between. I told them I thought I had a brain tumour and asked for an MRI. I was fobbed off every single time. It took nine months to get that MRI only because I refused to leave the hospital without one. I was then diagnosed in a few hours but the damage had been done. I put in a complaint to the Medical authorities and was told in writing "we don't like to punish doctors". So the patient has no hope. We shouldn't have to be going for second, third and fourth opinions at our expense. Doctors should just do their job and not think they are God's gift to the human body. I was a Registered Nurse in theatre and I have no faith in the medical profession. I have seen in all.
You contacted the wrong place if you want to be taken seriously tell the doctors that ignored you that they were wrong, imply you're going to sue, put a little fear in them so they will listen to the next patient more closely. You may just save someone's life.
Someone should begin an online pétition about how doctors don't take us seriously, etc. It's happening everywhere so much. They misdiagnosed me for years despite my positive labs that ignored me. I have lymph nodes enlarged in the neck, I have sweat, pain, swollen neck, it's extremely painful. And gotten worse. But I'm scared of doctors because of their behavior. 😢 I'm so tired of this.
Your story is almost identical to mine. I only wish my gp had given me an apology instead of medically gaslighting me. So glad the other Dr was able to connect the dots and help you get an answer. Sending love!
You can report their gaslighting to the American board of medical examiners. Your doing so could save another person from going through your hat you experienced and maybe save someone's life. Doctors get alot more cautious when patients report their behavior it is taken very seriously.
My husband ran across this story and it just really really hit home for things I have been going through the last 3 yrs. He showed it to me, reluctantly, because he didn’t want to scare me. There are SO many similarities. But I told him, I don’t *think* I have cancer. But if I do, at least there will be an explanation. So it doesn’t scare me. It does the opposite. It’s giving me the courage to keep on searching for answers and not just accept the unknown. So thanks so much for sharing this story. I do hope I can find some answers. I am so tired of fighting an invisible monster. Thank you 🙏🏼 And for this beautiful woman, I am so glad you are still here for your family. 🙏🏼🙏🏼🙏🏼
My daughter. Was diagnosed with non.hodkins lymphoma aged 26 right out of the blue after tonsillitis for the 5 time in 8 moths .... then breathless. Diagnosed in a and e there and then. Massive shock ...didn't go home for 3 moths from that day . Only after an x ray by an astute doctor .. only to find a large mass in her chest.... after 6 rounds of chemo 3 years down the line now. Still all good . Lymphoma notoriously difficult to diagnose. Big hugs. And very much found your explanation very interesting. Thanks. And hope you keeping well. 🤗
I hope someday someone writes a book with our stories, (not only cancer it happens with many illnesses). I hope someday doctors can understand us and don't dismisse us and we can get the right diagnosis and have hope. They make mistakes and we can't do anything but live in pain and being treated like if we were crazy or depressed. Blessings 🙏🏼🕯️
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
Thank you for this, I’m sick all the time, same things, finally got a referral to a Hemo/Oncologist this month! Thanks for the help! God bless you, praying for you
If it weren't for the fact that I am a receptionist at an Oncology/Hematology Department working w/ Chemo patients, I would've never known how serious this all is that's going on w/ me. DVT in a 27 yr old is, um, unheard of unless you're in your 60s🥴
You’re so brave to share your story, thank you so much. Listening to you could be my own story I’ve been going through the last 2 years. My GP decided to “retire” as soon as Covid hit and my symptoms basically were ignored for all this time since. I have lupus as well, so docs like to blame all my newer or different symptoms on lupus. Like you said, you knew it was different, I do too. I’ve been waiting for a CT on my lungs for 5 months! In Canada we don’t pay to have tests..instead we wait..and wait. God Bless
You're right, doctors tend to blame for everything if you have already a disease diagnosed. I hate that! How are you? I have lymph nodes enlarged in the neck and chills,sweat, my neck is swollen..😢
I hate that, I have Lupus and it becomes a catch all for any new symptoms. You know hoe hard it was to even get your diagnosis so you know getting anyone to believe you is difficult. Don't take that as an answer
Leanne, I'm so sorry you went through all of that but happy you are here to tell your story. Your story sounds very similar to my story but I'd already had a prior cancer dx with a different lymphoma 7 years before that. I KNEW there was something serious wrong with me because I'm a nurse and know my body extremely well. I was frustrated that I had to go through all the night sweats, relentless itching face and neck etc and exhaustion, horrible coughing, and brutal and worsening back pain and unable to sleep etc. My daughters, thankfully, called an ambulance for me due to the incredible pain I was suffering and wasn't sleeping because of the pain. After the ER visit, I was admitted and I had surgeries and so forth. It was a whirlwind of appointments and seeing an oncologist out of town, which was a challenge. After 8 R-CHOP tx, 2.5 years of chemo/cancer tx, I felt much better except for the long term side effects I will have to live with. I know I'll never be the same, but want to live until all my kids to get married and have their families, anyway. Message for everyone: TRUST YOUR GUT FEELINGS and DON'T GIVE UP! (especially if all tests haven't been done and/or you truly feel there's something very wrong!) Leanne, as you said in your video, "Advocate for yourself!" ❤
I'm in Aus and thank you for sharing!! I'm not getting a firm diagnosis. Menopause. Yep. ESR high, CRP low. Continuing to find answers. Your story has been helpful. ❤
Leanne you are such a brave woman. We had similar problems with my dad’s care and unfortunately he ended up passing away from his cancer. We nursed dad at home and one day the doctor who gave my dad antibiotics for months without seeing him during covid came to our home and my sister stood with him beside my dad who by this time was unconscious and made him apologise. I am crying here as i type this. You sometimes wonder how they become doctors.
My two young sisters past of skin cancer and the other ovarian cancer. My father past of colon cancer and my mother had breast cancer but died of a broken heart. I have monoclonal gamapathy pre-cancer and my wife has multiple myeloma. There is something seriously wrong in our societies! We all know what the problems are but its easier to focus on saving the planet by changing from plastic straws to paper straws. My deapest prayers to everyone here who suffers and has to fight.
Prayers for you! Cant get over how 100% our stories are alike!. I had stage 4 cervical spread to lympnodes im 42. It was misdiagnosed as everything even by a cancer center in my hometown (scary) went 2hrs away to Atlantas Emory they found it in 3min after a CT 🤦♀️ ive now done treatment for over a year got rid of most of it🎉 but found out last night (again after being told i had a uti) that its back and in my liver. Cancer is no fun. Prayers to you!!! ❤
Jennifer, I am so sorry to hear of your struggles. I am about two hours from Emory myself. I am originally from Atlanta. Where I am the ER is like an Urgent Care and I know about the cancer centers where I am because they have been searching for my daughter's cause of her illness for years. You are in good hands with Emory. God bless you and may all be well with you.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
My mother was totally dismissed by her doctor over and over. He told her that her symptoms were menopause. She deteriorated over a year or so. pain sent her too emergency. It was a young intern who gave her an ultrasound and found advanced lymphoma. Get second opinions until you are satisfied
@@heatherjackson2520you are so not alone 🎉. I'm going on year 3 and right there with you trying to make my way through this minefield of medical "care" for post menopause women. Unfortunately ageism sexism and dismissiveness are the norm.
I'm so sorry you had to go through such a horrible experience to finally be heard. Sadly I feel that once we (especially women) hit a certain age, we somehow become invisible to doctors. It's as though we no longer really matter. I'm in Canada and it's the very same here. We have to be insistent and determined when we know something is wrong. It makes me want to scream "I'm 61, I'm not dead!". Much love sent your way. ❤️
Agreed. As much crap as American healthcare gets, it's largely undeserved. I'm American, but was born abroad and lived abroad as an adult. I can state for an absolute fact, many other "advanced" countries are more worried about treating the symptom and getting you out the door than finding out what is actually wrong. Canada is simply "suffer and wait" healthcare. That might offend some people, but they 1: don't know what they are talking about or 2: have some fetishized ideals about socialized healthcare. I was on a medical clinic board right near the Canadian border in Alaska for years. I can't tell you how many patients were Canadian who came over the border to pay out of pocket for routine things that would have them waiting weeks / months: tooth abscesses, unable to get dentures (you know, so you can eat), infections, etc - to very serious illnesses.
Leanne ....God bless you for your courage and inspirational story. Thank you for your grace and for forgiving the medical staff. Wow what a beautiful lady. Xx
Wow! Identical stories here! Mine took 6 years to diagnose...lymphoma and metastatic cervical cancer...stage 4 ,but could have been prevented. I was told I was working too hard .which cause intense pain and I had " allergies" ..nope I had the coughing for several years too..
In USA my daughter was told last year during a week long hospital stay at UCSF. That she has lymphoma. It’s been a year and they’ve still done nothing for her, no treatment nothing. We fight daily with the system here but have not given up. Praying for the one good Doctor To help her.
Please push the squeaky wheel gets the oil. Where do you live? Here we can get a patient advocate with the insurance, politicians can be pushed to give assistance also. If you're in thr USA I might could help..??
Oh my goodness it was like listening to my own story which is happening right now...I was told over the phone by my GP what I had.I was on my own when she told me..I was so angry with her so very unprofessional and no compassion what so ever. I've just had the biopsy and now waiting for the results my journey is now continuing so what is next. I have the love and support of my family, friends and my beloved animals unconditional love all the way.
Your story is exactly like my story. I’m still having chemo so we’ll see what the end results will eventually be! Thank you so much for sharing and God bless!
I just saw this video and just found swollen lymph nodes in my body that I didn't notice before due to weight gain. My partner now can see the one protruding out the side of my neck and we can't unsee it! I have had severe fatigue and a lot of other issues. This has really opened my eyes and I need to take my health seriously and advocate for myself at the doctors.
Three years ago I had a lump on the side of my neck and the doctor I was seeing at the time said it was a goitre..looking back now I can't believe I just trusted her.. Anyway I left it untested for a good couple of years and then one day someone said to me you should go get that checked.. It wasn't bothering me or anything like that but it was still a lump and lumps get checked. So I did. And one test after another it turned out to be some form of lymphoma but wasn't cancerous. A lovely doctor by the name of Dr Slaughter cut my throat and removed it. I couldn't make this up...that was his name. I probably shouldn't say he cut my throat...he removed the lump. Then I went in for bloods and check ups every 3months then 6months then a year and still nothing has progressed. I guess I'm telling you this that sometimes finding a lump doesn't always mean the worse. I sincerely hope everything is going well for you. Its the scariest time of ones life...and im sorry u are going thru this. x
That’s the same place I could clearly see mine 2 years ago then the dr found 4 enlarged. Had CT scan they said everything is fine . Well the nodes are still protruding? I’m confused. I will show her again next month . Good luck to you . ❤
Well it turns out I have thyroid cancer, spread to my lymph nodes! :( I am going for a FNA on my thyroid nodule tomorrow. I don’t know much other than it is very likely cancer (the microcalcifications found in my thyroid nodule are also present in the lymph nodes) and given my family history I have no doubt it is. I am so grateful for this video I think it may have saved my life, hopefully anyway.
You are an amazing woman! Know that you CAN make it through anything. Look at what you have already made it through!!! You provide inspiration for all women to realize that we are stronger than we think.
leeanne i am so glad you told your story, and delivered it so professionally, i've been having ongoing issues too, you give me courage to search for answers. They forget they're working for us, we pay them, they don't pay us, but they make you feel like you're holding them up alright.
Leanne, thank you very much for sharing your story. I admire your resilience and determination to advocate for your own health. Your story is a reminder to all of us of the importance of self-advocacy in healthcare. I hope this serves as an inspiration to others who may be going through similar experiences. As a future physician, watching stories like yours, is a powerful reminder for me to take the time and actively listen to my patients. I commend your courage in confronting the doctor who initially dismissed your symptoms. It is unfortunate that it took so long for you to receive a diagnosis, but I am glad to hear that a general practitioner trainee was able to look at your symptoms holistically and provide the correct diagnosis. Unfortunately, this experience is all too common and it’s disheartening. Doctors are human and can make mistakes, but they must practice open communication and establish trust with their patients. That is why it is essential that healthcare providers must take a holistic approach to patient care and remind themselves of the ethical principles of healthcare, especially ‘nonmaleficence’ (“to do no harm”); in your case and to many others with similar experiences, to do nothing is harming. Again, thank you for sharing your story and raising awareness about the importance of advocacy. I wish you all the best in your continued journey and I hope you are provided with resources toward recovery.
I wish you success as a doctor, think about these stories and even if it turns out one patient is just a complainer or another is drug seeking not everyone falls into those categories because it's a person you're looking at not a category or a number. Think of every patient as your mother, father, brother, sister or grandparents and think how would I take care of those I love so much? Then think this person in front of me is someone else's,mother or father or sibling, treat them all well. Don't get jaded by an awful system that makes medical decisions with a calculator and no education. Advocate.
My PCP is overbooked, eyes stuck on his computer, fails to reply to anything I say, office staff all start a the front desk and are "promoted" to MEDICAL ASSISTANTS🙄 Mrs. MD works in the office, handling billing and very unfriendly. Lab results are never reported to the patient, unless by chance at a pending office appointment, or you call. This type of practice didn't exist decades ago, now it's common place. How many patients are falling through the cracks with missed signs of serious illness? Since the pandemic, things have only gotten worse. I'm truly unhappy, but fear that finding another MD will not make a difference.
What a wonderful woman you are. Listened to your every word. Ok that Dr learned but oh my gosh how all your symptoms were missed-especially the spleen and nodes. I'm so glad you're doing better! Love to you over there in Australia! Sounds like you're going to have that future 30 years you spoke about at your 60th birthday party!
You are your own best advocate. Sadly it may come when we are at are weakest but don't give up. Wonderful that you will now continue your journey with your family and friends, peace and health. I had a few Dr's who were upset with me when I brought my journal with my symptoms and questions , as my memory was being affected by the extreme fatigue but I also have a team of gems.
God bless you Leanne! Thank you for your courage to share your story. It will definitely make me and others be more mindful of lingering medical issues the doctors might want to pass off as trivial issues. I do hope and pray you are in remission now! - A Friend from Texas
Thank you 😊 I had a PET scan 2 weeks ago and I’m still cancer free. My son gets married in 2 months time and I’m so excited to be healthy and well for that! Best wishes
I know how you feel. Just went through a year of bad advise and misdiagnoses Still going through so much and still don't know what's wrong. Thanks for your video.
All these symptoms are exactly the same as the autoimmune disease Sarcoidosis. I have this. By needle biopsy of my enlarged lymph node the result came back as lymphoma. It has happened before. Eventually I had a surgical biopsy of the lymph node and the results were Sarcoidosis.
Advocate advocate advocate for yourself. Absolutely! I had a similar experience starting at age 35, and that doctor told me it was all in my head. Fast forward two years they find a small lump near my breast. By this time I was suffering from pneumonia and bronchitis constantly. They sent me to see a therapist and the therapist told me unless it was something organically wrong with me I would never get well. I asked a friend what that meant and she says that means if you don't have something like cancer. I took my mammogram imaging and I ran to the cancer center looking for a second opinion.. within a few hours they knew immediately that I was facing either Non-Hodgkin's lymphoma or AML. I had weeks to live, it was everywhere but the liver. I ended up getting treated for Non-Hodgkin's lymphoma, and in ten months I was in remission and still am. The Doctor who told me it was all in my head , ran off and never returned to his office. No apology, nothing. Sadly about 6 years later my brother passed away from the same cancer. I'm resilient, and that helps fighting a horrible disease. 26 years later the chemo is aging my heart, kidneys, lungs and I have 3 autoimmune diseases. If I had to do it all over again I would. Advocate advocate advocate for yourself, no one else will.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
Life is very short and I think people are best suited to try and ponder over the purpose of their creation and prepare for that part of the journey. The hereafter is eternal . It’s no joke ! People really are deluded from what really matters. Death is inevitable and we only are given one opportunity to contemplate and prepare for what will happen next. I was diagnosed with cancer at 37, had a heart attack 48. I know that tomorrow is not promised and I am doing my best to try and stop living for this worldly life and start investing in what is ahead.
Check with Jehovah’s Witnesses for further help in understanding what you expressed, free of charge they come to your home to help comfort you from God’s word.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
@heatherjackson2520 if youre in the U.S., try to find a nurse navigator. Many cancer associations have hotlines that offer assistance, especially lymphoma societies.
Your situation is not unusual in terms of doctor indifference and them being rushed. I had a PCP tell me to look toward the East every morning to assuage my grief of losing my husband. I found a new doctor. Still your situation was dire and you waited a long time to be diagnosed. My heart goes out to you. You provided a succinct, compelling presentation of what you went through. I hope you continue to be healthy.
I’m so sorry you were misdiagnosed and pushed aside for so long. I think that experienced doctors seem to sometimes lose touch with why they became doctors in the first place. They stop trying to connect the dots and really narrow down what is ailing a person, even when blood and imaging tests point to something being wrong. I saw a doctor a few months ago for chest pain and they ruled out cardiac and blood clot issues in my lungs, but when I looked at my blood test results, it was obvious that I had an infection as my inflammation markers were abnormal. That was not mentioned at all when I was spoken to about my diagnosis. I took myself to urgent care the next day and was diagnosed with flu A and B simultaneously. I told the doctor about my diagnosis and she apologized. Absolutely a classic case of having to advocate for oneself. I hope you get well soon 💗
Thank you for sharing your journey. I think you are an amazingly strong woman in so many respects. Your forgiveness to the medical profession is admirable. Yet so necessary for you. I feel many people who will watch this will push for more instead of accepting. Bless you going forward.....
OMG your so amazing. So sorry for what you have been through and are going through. Praying your strength will see you through this and for the best of health for the future
Thanks so much for sharing your story, I find it interesting that it takes so long for doctors to reach a diagnosis. I’ve experienced this so many times that I hesitate in going to see my doctor just to hear those dreaded words, “well looks everything’s normal”, when you know it’s not! By the way, your clothes are beautiful 🌹
Here in the US, they suck too. About 15 teen years ago. I became very sick and went to my doctor he ran some tests and said he didn't know. I went home, then one month later. I was hospitalized for weight loss of 73 pounds . At the hospital I was told I was a hypochondriac and that they couldn't find anything wrong. 2 years to the day I was hospitalized again with over 100 lb weight loss and teetering on the edge a life-and-death. I was transferred to another hospital where they had a Disease and Control doctor available. When he walked into my room he told us that he believes I have a disease called lupus and that he would be running the test to show that lupus is what I have. 2 Days Later after a four-year battle with doctors telling me it was in my head that I was actually diagnosed with a disease called lupus. Lupus is an autoimmune deficiency disorder where your body fights itself it considers your body of foreign object. There is no cure for Lupus.
Oh my. I'm sorry to hear that 😔 I hope you are as comfortable as you can be. Sometimes the medical profession fail miserably. You deserved so much better than that.
Shellie, I am so sorry about what you are going through. There is a doctor named Dr. Brooke Goldner who had lupus beginning when she was a teenager. She became a doctor and healed herself, and now she helps others with chronic illnesses, not only lupus but other autoimmune diseases as well. I wish you all the best.
@@kathleenmaloney915 Lupus is one of over 80 different autoimmune diseases. None are curable. I have PsA and am now being screened for lupus. I am also having a second CT scan for possible lung cancer. So many symptoms overlap--loss of appetite, weight loss, fatigue, shortness of breath, almost daily low-grade fevers, and more recently a nighttime cough. Fortunately, ever since my PsA diagnosis (which took 3 years to get), I have assembled a wonderful team of specialists. But that was after firing my primary care doctor, a neurologist, dermatologist, and rheumatologist who were not listening to my concerns or would refer me to someone else.
@@jodybogdanovich4333 A lot of bad doctors. You may want to ask to be tested for Sjogren's. Before I wa diagnosed, I was told that I had emphysema. CT can showed inflammation and scarring of the lungs due to ILD. I did not believe that I had it. Saw two different pulmonary specialists--both said autoimmune diseases do not cause lung scarring. Sjogren's and Sarcoidosis are two that definitely do.
It took over 3 years to get a diagnosis for me. The last 3 months were just rediculous. Physically I was going down hill. I would try to eat and it felt like I was trying to swallow gravel. I went from 170 pounds to just over 100 pounds in 3 weeks. I was told to eat more. The huge lymph under my right arm, the lumps in my throat, and the scan showing something growing on my liver should have been enough to send me to a specialist. I called the ambulance for myself. After a torturous time in the local ER I was sent to the big city. I was done I did not care to live any longer. I was just 100 pounds. They weighed on the gurney. I could not stand. Aggressive Large B Cell Lymphoma. Finally. Something. There is so much more of my story and it would take up pages to tell it all.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
This!! This lady is a tough woman, so glad she seems to be doing better! The fact she actually went back to that GP is so impressive, also important for the healing process, hearing a sorry, but also, for him to learn from his mistake, and that it's just not a bump in the road, but a human being in flesh & blood you are dealing with, wanting to get help when feeling unwell. Overworked may be the reason, but still, it could be a matter of life & death and when swearing the Hippocratic oath, you swear to, if not cure, able to ease for the patient and help..if you cannot do any of this, but dismiss the patients, then there is something major wrong with the system.
Your story is a bit like mine. You have given the best message I have yet seen and that I can think of for others who will begin this kind of journey too.
I was done to me!! Even though I kept telling them something was wrong they failed me. My liver doctor said I had a low level of iron every time I saw her. She said tell your gp to do a battery of blood test. It took her 2 different times of seeing her. Finally I raised my voice to her and she said ok. I have multiple myeloma... we all really have to advocate for ourselves. Speak up, yell if you have to!!
I went through a similar journey as you. I knew for about 8 years and I kept being prescribed antibiotics and antidepressants. It wasn't until my tumors were big enough for the staff at my hernia doctor's office to find with a sonogram. It was only after that that my non-hodgkin's lymphoma was diagnosed. It really does feel like you are going crazy. Cannabis kept me mostly sane through much of it. I still have a year of chemo to go through and so far so good. Stay strong.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
I was diagnosed with lymphoma in my spleen yesterday. I was also not getting the proper care from my Doctor's and several emergency room visits. Finally a Doctor who actually cared, dug deeper and put all the pieces together. I'm mad so many Doctors basically blew me off but, morbid or not, am happy to finally find what's wrong with me.
Praying for you that chemo therapy is successful for you! I had non Hodgkin’s lymphoma stage IV in 1980 had CHOP chemo therapy and I’m 62 now! Unfortunately I was diagnosed with Cholangiocarcinoma April 10, 2023 not related to lymphoma! Prognosis isn’t good they couldn’t get all the margins! I am going to do radiation therapy and start an oral chemo post radiation to slow the progression and give me more quality time hopefully with my family! Praying for you the treatment for lymphoma is very promising God bless you 🙏
That is exactly what my dad had. Large B cell diffuse non-hodgkins lymphoma. He had it twice. He was in remission for about 7 years, so that was good. I stayed with him 24 hours per day for his last 10 months.
Oh, I can relate. It took 13 stabs for them to get an IV for my colon cancer surgery. It’s an alternative universe. It really is. Life goes on for most people, but there are some of us that go to cold, dark basements for radiation, and sterile rooms for chemo infusions, and of course, surgery. Slash, burn, poison. That’s where we are. So glad you FINALLY got diagnosed, and I hope and pray for a full recovery. All my hopes, thoughts, and prayers are with you. Much respect for telling your story. From Virginia, USA, Mike
You are intelligent and courageous, many patients, especially women, are not paid much attention, when they complain about symptoms, that could be very important, in diagnosis of their issues, best wishes to you.
Thankyou for your story, I myself at the moment are going through trying to convince my Dr about my cough being at the back of my throat, and coughing constantly
Your story is a tough one, but I´m so glad for you that you have been such a good advocate for yourself and that you were lucky to find that young doctor who took the time to look at the full picture and also to be empathic. While I understand the lack of time doctors generally have, I find it unacceptable that too many tend to dismiss whatever symptom we might have as something not serious and/or something that we ourselves caused and could do something about.
Sorry you had to go through this I’m trying to get diagnosed now and finding the doctors so arrogant and complacent it’s so upsetting a doc said to me the other day your digging too deep and I said I am I’ll and trying to find out the cause so I can treat it So upsetting !!!! Stay well ❤🌈🙏
Thank you so much for this video. This makes me want to advocate for myself even more. I’ve been having fatigue & severe joint pain for months. My GP prescribed a week of corticosteroids & an NSAID cream and was told to take ibuprofen for pain after I told her ibuprofen didn’t work. She did blood work & my uric acid levels were a bit elevated. Tested negative for RA. The only thing she wanted to prescribe was allopurinol. I read the side effects & also read that it does absolutely nothing for pain 😢. I was floored. I guess I’ll be looking for answers all of 2023 🤷🏻♀️
I suggest you ask for a referral to a rheumatologist, those are symptoms of autoimmune diseases and there are medications that aren't narcotics that not only help with discomfort but also stop the progression of the disease which is the most important part
It’s good they apologised but they have no right to be dismissive in the first place. It is so frustrating and distressing to have to fight to be heard when you are already in such bad health, it makes you so much worse and more ill. Doctors need to start being held accountable especially for the people they accuse of being a hypochondriac when they are literally on the verge of death and trying to get help. I don’t see how this isn’t getting better or why it’s even still happening in this day and age.
I agree with you. But sadly that doctors don't take the patients seriously is so common now. It's always being struggling to be heard or taken seriously. Seems they want to probe there's nothing wrong.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
I first reported a rash on my arms to my local GP surgery 2 and a half years before I was finally diagnosed with Stage 4 Hodgkin's Lymphoma. I was told over and over again that it was eczema or that I was allergic to sunlight! Even the dermatologist didn't pick it up! Eventually I developed lumps on my legs called Erythema Nodosum, which prompted a chest X-ray. The results of the chest X-ray revealed a shadow on my lungs. The CT scan revealed enlarged lymph nodes in my chest and neck, the biopsy revealed Hodgkin's Lymphoma and the PET scan revealed that I was Stage 4 and that the cancer had spread to the edge of my lungs!! I had 6 months left to live before I started chemotherapy, and I'm just coming to the end of my treatment. Thank you for sharing your story. It's shocking how these things are not picked up soon enough. We need more stories like this to bring about positive change.
I hope you will recover from this Rachel. Im feeling all of the symptoms but dont have the capability to consult a doctor. I will be praying for your fast recovery
Blessings🙏
I'm praying for your recovery Rachel
Hope you get better and get well
The FDA are the want people sick. Endless customers
I'm so GLAD that you finally got answers! My husband was first diagnosed with Follicular Lymphoma when he was 55 years old. He had a lump just in front of his right ear. The dr performed surgery and as soon as he opened his face up he saw that it was cancer. So they did a biopsy of what they removed at he was told it was Follicular Lymphoma. They did a full body scan and said at that time they were just going to wait and see because they didn't want to start cancer treatment until it started to be aggressive. In no time it had changed to aggressive B-cell and told him he had to have treatment right away. His treatment was "CHOP". He had to be hospitalized because the treatment was so brutal. They also wanted him to have a stem cell transplant. He said no. My husband survived the treatment and was told he was in remission. Now my husband is 78 years old and 3 years ago he was diagnosed with F. L. again. And they told him he probably had it for at least 3 years. His symptoms started out as an annoying cough that wasn't productive at all. He was in the middle of changing doctors so here in America you go to Urgent care and are seen by whatever doctor is on duty at the time. They kept diagnosing him with pneumonia and would give him meds and he would go home. After the 4th time of going to Urgent Care, I went with him and told the doctor that he doesn't have pneumonia which is what he tried to tell us he had...again. I said he needs to see a specialist, something is wrong! The doctor said, well an Urgent Care doctor really doesn't have any pull with specialists. I said please try! So he stood there and typed a note to a pulmonologist. My husband was finally contacted by a Pulmonologist's office and an appointment was made. As soon as he pulled up his xrays he said no, he's never had pneumonia. He said I bet your Follicular Lymphoma is back. He had 2 large tumors right behind his esophagus and had closed off his right lung. My husband was NEVER told that there isn't really a cure for FL and that you will have to keep going back for "maintenance" when the cancer starts to grow again. His treatment was Retuximab and Revlimid for the last 3 years. He is finished with his treatment and is doing great. We have to trust ourselves and realize that we know our bodies. When something feels wrong we have to be insistent with these doctors.
!
May God continue to bless you both! I have a "wait & watch" lymphoma. It can be nerve racking. Enjoy every day!!
@@marloulman104 Amen and thank you! We certainly ARE enjoying life.☺ May God bless you as well.
I had a swollen lymph node on my inner thigh. Was told as we got older we got bumps. After a year I went to another doctor who did biopsy and found my Follicular Lymphoma which like yours, was a watch and see. Also turned into B Lymphoma with same R Chop like him. Mine is also back after 4 years on my spleen. I also have had to be more forceful then I have ever been in my life!! On my 6 mo checkups prior my oncologist never laid a single finger on my body. Just the same questions every visit. Luckily I had a CT scan on my 6 mo visit. I have lost so much respect for all Dr.
@@pattylyman7907 we feel the same about drs. My husband developed an infection in his lungs and he said its just a virus. Well, I talked to our primary dr and said I wasn't accepting that diagnosis..viruses don't last over a year. She sent us to a Pulmonologist and he did a biopsy and found it was a bacterial infection that you get from Retuximab. A bacteria that he will never fully get rid. The bacteria is encapsulated so its difficult for the antibiotic to fully clear the infection. I don't have a problem with telling these drs what I think, but they have pushed us to that point.
I will be praying for you.
@@artbysonyabadgley And I for you and your battles
I could really relate with your story. I have NonHodgkin Lymphoma, Mantle Cell, which was diagnosed in 2015. Our medical care in the States has become a nightmare. I’m mostly ignored by my GP and Rheumatologist. My cancer isn’t curable and now I am 71 years old. I see the difference in how I’m treated. Each doctor wants to send me to a specialist for every little problem. I have become a different person. I will see my oncologist in a couple of weeks and am expecting another CT scan. I pray you have a long life and can beat this insidious disease. It’s a journey and it’s not easy. 😊🙏🌸
Is your cancer so called not treatable because of the mantle cell??
Mantle cell lymphoma is “treatable but not curable.” Patients can survive a long time or else they will succumb in short order.
@@teamtrioauto5474 yes mantle cell is definitely treatable- it affects the large B-cell, which is also treatable. That was what I had, stage 2. Under my sternum, wrapped around my neck, beyond coughing: suffocation by strangulation from my masses. I have been clear for 13 years now.
Lisa, thank you for sharing your experience here. If you'd like to share more, please feel free to reach out to our team: alexis@thepatientstory.com. Thank you.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems
So glad she mentioned the cost of all the tests as not all could afford to keep digging for further answers …
My mum was misdiagnosed for years too, doctors giving her pills, eye drops, test after test only to tell her that there was nothing wrong with her..... 6 weeks later after getting a second opinion from a different doctor she was given 6 months to live because they found she had pancreatic cancer. She died exactly 6 months later Christmas night. NEVER stop looking for opnions, listen to your body and don't take no for an answer until you get to the root cause. You must advocate for yourself, you have everything to lose. I'm so happy for Leanne that she finally got her diagnosis and treatment and that her recovery will be flawless with a very long and healthy life ahead of her.
I can relate to this - I have had worrisome symptoms similar to that of pancreatic disease...but no CT scan has ever been ordered...just ultraound which didn't show the pancreas clearly..so I'm told that nothing showed up. So, what do you do! Just wait until things get worse...yes...in Canada that is what is happening. You can't see your doctor for more than one symptom, so, which symptom do you pick? It is so sad, and very dangerous...
The problem is people shouldn't have to get opinion after opinion. Doctors should just do their job. Fatigue is one of the biggest symptoms in blood disorders and along with an enlarged spleen should have rung alarm bells. I am a Registered Nurse and knew this so why could they not pick it up. It is not as though she had some rare one in a million disease. Doctors are too flippant and dismissive.
@annekennedy8127 I am Canadian and have had horrible symptoms for 2.5 years now and I stopped going to my Dr. because there are too many symptoms and he only allows me to address one.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
@@annekennedy8127 - NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
It’s taken me 5 years to finally get my diagnose. I tried to tell them, the Doctors. Over and over. I finally had a bronchoscopy and biopsy. And I was right. Cancer. It’s now spread to my sinus and brain. I just sent my doctor an email saying, I told you. 😞
So Sorry Hope you get the help you Need Now
What type of cancer?
That’s a horrible situation they’ve thrust you into. No consequences for them, you bear their passive aggressive attitude results. I am so very sorry you had to go through that long, gaslighting experience. 🙏❤️🙏For you.💔💔💔💔
@@Cwgrlup good advice, but in Australia I doubt she’d get much back, except more bills, and frustration.
So sorry to hear, what was your full list of symptoms? x
That trainee was an angel! I am so sorry for your suffering💔 I too am a cancer survivor❤️
Thank God she finally had someone actually LISTEN to her & study her health history. If I got the diagnosis after all of that I would be mad as hell (women get that attitude way too often). I would go back to every doc & beg them to not blow off a patient like me ever again!
This makes me so tearful. Thank you for sharing your story. My father recently passed from Stage 4 cancer. He had been going to doctor after doctor and it was not detected.
So sorry about your father , may I ask how they finally realized he had Cancer?
My father died from cancer that was incurable, so early diagnosis or any diagnosis didn't matter.
Very articulate well spoken thank you Leanne. Im so sorry to hear how difficult for you to finally be diagnosed.
I’m so glad the GP was empathetic and apologized I believe you taught him more then medical school textbooks could ever had.
The med student was a she with what sounds like a great bedside manner.
The medical student or intern who was so pivotal in getting you correctly diagnosed is a fine example of someone who sees the whole patient, researches their history and findings and then hypotheses possible diagnoses. She saved your life and will go on to help so many others. I’m so glad she was there when you desperately needed her!
What a story! You seem like an amazing person. Thank you for being so open and honest.
So sorry .My wife went through the same thing and Passed away 3 months ago and it tore my heart apart God bless you .Stay strong
So sorry for your loss😢 May God help you through this!
I thought lumps (swollen lymph nodes) wete a first warming sign? I have these now in my neck and terrified. Didnt anyone have lumps?????
@@a.rosesrbleu9580 can you please read what I typed above I don’t know how to spell or punctuate and I don’t know anything about any of this this can you please see what I typed and what to do?
I had the coughing for a couple of years. I stopped eating in front of anyone because I’d start coughing and it was embarrassing. I finally had a MRI because of tailbone pain, and it showed Leukemia. It’s so easy to rationalize away symptoms.
Hope you’re doing well.🌸
Hope you're doing OK.
@@shelliebancroft4145 I am. Thank you.
😳😳😳 OH MY GOD !!! I HAVE BEEN EXPERIENCING THE TAILBONE PAIN for 5 months along with the 2.6 years of coughing, flank pain, inguinal pain from HUGE Lymph nodes, neck completely immobile from rock hard muscles and ENLARGED LYMPH NODES, not able to sit AT ALL because my legs go numb and have EXTREME PAIN in thighs, knees, calves, feet. Then unable to stand up after 10 minutes of sitting because hip pain. Cannot lay on back with phone as my arms go numb and start ACHING with shooting pain to my forearms, hands and fingers. What imaging study should I request for the tailbone pain/coughing and what SPECIALIST should I seek for treatment if there is such a thing ? 💜🙏🤗 I hope you are in a treatment plan and are surrounded by loving compassionate supportive people. 🙏 🧡
❤
I have tailbone pain. I went to my dr about it. Doubt they even put it in my medical notes for that day. Still have the problem on and off. Don't know how to get them to listen to me. Have also complained about how my arms hurt when I put them up over my head.
It is very rare to find a good doctor these days. I had balance issues, falling over, headaches and I went to five different doctors, emergency room and a specialist and was told to lose a couple of kilos, it was psychological and everything in between. I told them I thought I had a brain tumour and asked for an MRI. I was fobbed off every single time. It took nine months to get that MRI only because I refused to leave the hospital without one. I was then diagnosed in a few hours but the damage had been done. I put in a complaint to the Medical authorities and was told in writing "we don't like to punish doctors". So the patient has no hope. We shouldn't have to be going for second, third and fourth opinions at our expense. Doctors should just do their job and not think they are God's gift to the human body. I was a Registered Nurse in theatre and I have no faith in the medical profession. I have seen in all.
You contacted the wrong place if you want to be taken seriously tell the doctors that ignored you that they were wrong, imply you're going to sue, put a little fear in them so they will listen to the next patient more closely. You may just save someone's life.
Someone should begin an online pétition about how doctors don't take us seriously, etc. It's happening everywhere so much.
They misdiagnosed me for years despite my positive labs that ignored me.
I have lymph nodes enlarged in the neck, I have sweat, pain, swollen neck, it's extremely painful. And gotten worse. But I'm scared of doctors because of their behavior. 😢
I'm so tired of this.
One day someones going to get that stage 4 diagnosis after so much effort and there going to seek some revenge
@@lillyrocks2011go to an ND or FMD it will change your life
100% agree I am so sick of having to go to so many doctors it’s pathetic one should be all we need
I'm shocked to see so many in the comments with the same story 😳
Your story is almost identical to mine. I only wish my gp had given me an apology instead of medically gaslighting me. So glad the other Dr was able to connect the dots and help you get an answer. Sending love!
You can report their gaslighting to the American board of medical examiners. Your doing so could save another person from going through your hat you experienced and maybe save someone's life. Doctors get alot more cautious when patients report their behavior it is taken very seriously.
My husband ran across this story and it just really really hit home for things I have been going through the last 3 yrs. He showed it to me, reluctantly, because he didn’t want to scare me. There are SO many similarities. But I told him, I don’t *think* I have cancer. But if I do, at least there will be an explanation. So it doesn’t scare me. It does the opposite. It’s giving me the courage to keep on searching for answers and not just accept the unknown. So thanks so much for sharing this story. I do hope I can find some answers. I am so tired of fighting an invisible monster. Thank you 🙏🏼 And for this beautiful woman, I am so glad you are still here for your family. 🙏🏼🙏🏼🙏🏼
PLEASE consider gettung testing for Lyme and co/infections. The Best test is a DNA test that looks for the bacterial dna, most accurate.
My daughter. Was diagnosed with non.hodkins lymphoma aged 26 right out of the blue after tonsillitis for the 5 time in 8 moths .... then breathless. Diagnosed in a and e there and then. Massive shock ...didn't go home for 3 moths from that day . Only after an x ray by an astute doctor .. only to find a large mass in her chest.... after 6 rounds of chemo 3 years down the line now. Still all good . Lymphoma notoriously difficult to diagnose. Big hugs. And very much found your explanation very interesting. Thanks. And hope you keeping well. 🤗
My 21 yo daughter was just diagnosed. I’m happy to hear all the hopeful stories.
I hope someday someone writes a book with our stories, (not only cancer it happens with many illnesses). I hope someday doctors can understand us and don't dismisse us and we can get the right diagnosis and have hope.
They make mistakes and we can't do anything but live in pain and being treated like if we were crazy or depressed.
Blessings 🙏🏼🕯️
I believe insurance companies play big role in how doctors treat their patients. Something needs to be done about them too.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
Thank you for this, I’m sick all the time, same things, finally got a referral to a Hemo/Oncologist this month! Thanks for the help! God bless you, praying for you
Good luck Jennifer, I will say a prayer on your behalf
If it weren't for the fact that I am a receptionist at an Oncology/Hematology Department working w/ Chemo patients, I would've never known how serious this all is that's going on w/ me. DVT in a 27 yr old is, um, unheard of unless you're in your 60s🥴
You’re so brave to share your story, thank you so much. Listening to you could be my own story I’ve been going through the last 2 years. My GP decided to “retire” as soon as Covid hit and my symptoms basically were ignored for all this time since. I have lupus as well, so docs like to blame all my newer or different symptoms on lupus. Like you said, you knew it was different, I do too. I’ve been waiting for a CT on my lungs for 5 months! In Canada we don’t pay to have tests..instead we wait..and wait.
God Bless
You can choose to pay. You don’t HAVE to wait.
@@Lilitu333 good for you if you can afford to pay thousands in private testing. Canada is supposedly free healthcare.
Yes after a lupus diagnosis it's like good luck getting taken serious, same with chrones disease
You're right, doctors tend to blame for everything if you have already a disease diagnosed.
I hate that!
How are you?
I have lymph nodes enlarged in the neck and chills,sweat, my neck is swollen..😢
I hate that, I have Lupus and it becomes a catch all for any new symptoms. You know hoe hard it was to even get your diagnosis so you know getting anyone to believe you is difficult. Don't take that as an answer
Leanne, I'm so sorry you went through all of that but happy you are here to tell your story. Your story sounds very similar to my story but I'd already had a prior cancer dx with a different lymphoma 7 years before that. I KNEW there was something serious wrong with me because I'm a nurse and know my body extremely well. I was frustrated that I had to go through all the night sweats, relentless itching face and neck etc and exhaustion, horrible coughing, and brutal and worsening back pain and unable to sleep etc. My daughters, thankfully, called an ambulance for me due to the incredible pain I was suffering and wasn't sleeping because of the pain. After the ER visit, I was admitted and I had surgeries and so forth. It was a whirlwind of appointments and seeing an oncologist out of town, which was a challenge. After 8 R-CHOP tx, 2.5 years of chemo/cancer tx, I felt much better except for the long term side effects I will have to live with. I know I'll never be the same, but want to live until all my kids to get married and have their families, anyway. Message for everyone: TRUST YOUR GUT FEELINGS and DON'T GIVE UP! (especially if all tests haven't been done and/or you truly feel there's something very wrong!)
Leanne, as you said in your video, "Advocate for yourself!" ❤
I'm in Aus and thank you for sharing!! I'm not getting a firm diagnosis. Menopause. Yep. ESR high, CRP low. Continuing to find answers. Your story has been helpful. ❤
Your story is so moving. You are one strong woman. Put yourself first in every part of your life!
Leanne, you are an amazingly inspirational woman! So much love and respect ❤
I LOVE this comment! 💗
Leanne you are such a brave woman. We had similar problems with my dad’s care and unfortunately he ended up passing away from his cancer. We nursed dad at home and one day the doctor who gave my dad antibiotics for months without seeing him during covid came to our home and my sister stood with him beside my dad who by this time was unconscious and made him apologise. I am crying here as i type this. You sometimes wonder how they become doctors.
My two young sisters past of skin cancer and the other ovarian cancer. My father past of colon cancer and my mother had breast cancer but died of a broken heart. I have monoclonal gamapathy pre-cancer and my wife has multiple myeloma. There is something seriously wrong in our societies! We all know what the problems are but its easier to focus on saving the planet by changing from plastic straws to paper straws. My deapest prayers to everyone here who suffers and has to fight.
What the problems are? Too much stress, processed food, pesticides?
@@xyz12345457 yes
@@Lua658 Lua - I think you picked the 3 I would have chosen myself.
Prayers for you! Cant get over how 100% our stories are alike!. I had stage 4 cervical spread to lympnodes im 42. It was misdiagnosed as everything even by a cancer center in my hometown (scary) went 2hrs away to Atlantas Emory they found it in 3min after a CT 🤦♀️ ive now done treatment for over a year got rid of most of it🎉 but found out last night (again after being told i had a uti) that its back and in my liver. Cancer is no fun. Prayers to you!!! ❤
Please watch the cancer survivors vidéos...don t stick ti thé doctors advices
Jennifer, I am so sorry to hear of your struggles. I am about two hours from Emory myself. I am originally from Atlanta. Where I am the ER is like an Urgent Care and I know about the cancer centers where I am because they have been searching for my daughter's cause of her illness for years. You are in good hands with Emory. God bless you and may all be well with you.
What were your symptoms ?
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
My mother was totally dismissed by her doctor over and over. He told her that her symptoms were menopause. She deteriorated over a year or so. pain sent her too emergency. It was a young intern who gave her an ultrasound and found advanced lymphoma. Get second opinions until you are satisfied
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems
@@heatherjackson2520you are so not alone 🎉. I'm going on year 3 and right there with you trying to make my way through this minefield of medical "care" for post menopause women.
Unfortunately ageism sexism and dismissiveness are the norm.
I'm so sorry you had to go through such a horrible experience to finally be heard. Sadly I feel that once we (especially women) hit a certain age, we somehow become invisible to doctors. It's as though we no longer really matter. I'm in Canada and it's the very same here. We have to be insistent and determined when we know something is wrong. It makes me want to scream "I'm 61, I'm not dead!". Much love sent your way. ❤️
Agreed. As much crap as American healthcare gets, it's largely undeserved. I'm American, but was born abroad and lived abroad as an adult. I can state for an absolute fact, many other "advanced" countries are more worried about treating the symptom and getting you out the door than finding out what is actually wrong. Canada is simply "suffer and wait" healthcare. That might offend some people, but they 1: don't know what they are talking about or 2: have some fetishized ideals about socialized healthcare. I was on a medical clinic board right near the Canadian border in Alaska for years. I can't tell you how many patients were Canadian who came over the border to pay out of pocket for routine things that would have them waiting weeks / months: tooth abscesses, unable to get dentures (you know, so you can eat), infections, etc - to very serious illnesses.
No trust me it's all ages. They dont want to work.
Leanne ....God bless you for your courage and inspirational story. Thank you for your grace and for forgiving the medical staff. Wow what a beautiful lady. Xx
Wow! Identical stories here! Mine took 6 years to diagnose...lymphoma and metastatic cervical cancer...stage 4 ,but could have been prevented. I was told I was working too hard .which cause intense pain and I had " allergies" ..nope I had the coughing for several years too..
I’m so sorry you were treated like that. Women are always discounted and you did not deserve it at all. 🙁♥️♥️
In USA my daughter was told last year during a week long hospital stay at UCSF. That she has lymphoma. It’s been a year and they’ve still done nothing for her, no treatment nothing. We fight daily with the system here but have not given up. Praying for the one good Doctor To help her.
Please push the squeaky wheel gets the oil. Where do you live? Here we can get a patient advocate with the insurance, politicians can be pushed to give assistance also. If you're in thr USA I might could help..??
OMG I am so sorry that is outrageous
Oh my goodness it was like listening to my own story which is happening right now...I was told over the phone by my GP what I had.I was on my own when she told me..I was so angry with her so very unprofessional and no compassion what so ever. I've just had the biopsy and now waiting for the results my journey is now continuing so what is next. I have the love and support of my family, friends and my beloved animals unconditional love all the way.
Your story is exactly like my story. I’m still having chemo so we’ll see what the end results will eventually be! Thank you so much for sharing and God bless!
I just saw this video and just found swollen lymph nodes in my body that I didn't notice before due to weight gain. My partner now can see the one protruding out the side of my neck and we can't unsee it! I have had severe fatigue and a lot of other issues. This has really opened my eyes and I need to take my health seriously and advocate for myself at the doctors.
Three years ago I had a lump on the side of my neck and the doctor I was seeing at the time said it was a goitre..looking back now I can't believe I just trusted her.. Anyway I left it untested for a good couple of years and then one day someone said to me you should go get that checked.. It wasn't bothering me or anything like that but it was still a lump and lumps get checked. So I did. And one test after another it turned out to be some form of lymphoma but wasn't cancerous. A lovely doctor by the name of Dr Slaughter cut my throat and removed it. I couldn't make this up...that was his name. I probably shouldn't say he cut my throat...he removed the lump.
Then I went in for bloods and check ups every 3months then 6months then a year and still nothing has progressed. I guess I'm telling you this that sometimes finding a lump doesn't always mean the worse. I sincerely hope everything is going well for you. Its the scariest time of ones life...and im sorry u are going thru this. x
That’s the same place I could clearly see mine 2 years ago then the dr found 4 enlarged. Had CT scan they said everything is fine . Well the nodes are still protruding? I’m confused. I will show her again next month . Good luck to you . ❤
❤
@@finni-h2x And I thought my doctor's name was funny, Dr. Strange.
Well it turns out I have thyroid cancer, spread to my lymph nodes! :( I am going for a FNA on my thyroid nodule tomorrow. I don’t know much other than it is very likely cancer (the microcalcifications found in my thyroid nodule are also present in the lymph nodes) and given my family history I have no doubt it is. I am so grateful for this video I think it may have saved my life, hopefully anyway.
You are an amazing woman! Know that you CAN make it through anything. Look at what you have already made it through!!! You provide inspiration for all women to realize that we are stronger than we think.
That trainee doctor is going to be an amazing, empathetic, and caring professional.
leeanne i am so glad you told your story, and delivered it so professionally, i've been having ongoing issues too, you give me courage to search for answers. They forget they're working for us, we pay them, they don't pay us, but they make you feel like you're holding them up alright.
I had same thing 3 years of no diagnosis until recently and now it’s a terminal diagnosis. Sorry to hear
❤
That's bloody worrying. Glad to see you're doing better ❤️
You’re such a beautiful lady with a good soul, I’m sorry you went through all of that stress and worry.
I’m glad your doctor apologized and seemed like they learned from this. Most doctors would never admit to being wrong.
Best wishes from a 12 yrs Non Hodgkin survivor. There is a life after NHL. ✌🏼
did you undergo chemotherapy? what treatment and how many cycles? Im also an NHL cancer patient.
🥳
@@donnaescobal2428 first I got a wrong diagnosis. I got 2 rounds R- CHOP and when I got the right diagnosis foll NHL I got 2 yrs Rituximab.
@@werauchimmer9969
What symptoms did you feel and for how long until you got diagnosed?
Sorry for my poor English.
Leanne, thank you very much for sharing your story. I admire your resilience and determination to advocate for your own health. Your story is a reminder to all of us of the importance of self-advocacy in healthcare. I hope this serves as an inspiration to others who may be going through similar experiences. As a future physician, watching stories like yours, is a powerful reminder for me to take the time and actively listen to my patients. I commend your courage in confronting the doctor who initially dismissed your symptoms. It is unfortunate that it took so long for you to receive a diagnosis, but I am glad to hear that a general practitioner trainee was able to look at your symptoms holistically and provide the correct diagnosis. Unfortunately, this experience is all too common and it’s disheartening. Doctors are human and can make mistakes, but they must practice open communication and establish trust with their patients. That is why it is essential that healthcare providers must take a holistic approach to patient care and remind themselves of the ethical principles of healthcare, especially ‘nonmaleficence’ (“to do no harm”); in your case and to many others with similar experiences, to do nothing is harming.
Again, thank you for sharing your story and raising awareness about the importance of advocacy. I wish you all the best in your continued journey and I hope you are provided with resources toward recovery.
I wish you success as a doctor, think about these stories and even if it turns out one patient is just a complainer or another is drug seeking not everyone falls into those categories because it's a person you're looking at not a category or a number. Think of every patient as your mother, father, brother, sister or grandparents and think how would I take care of those I love so much? Then think this person in front of me is someone else's,mother or father or sibling, treat them all well. Don't get jaded by an awful system that makes medical decisions with a calculator and no education. Advocate.
Leanne you are amazing. All the best to you.
What a lovely woman you are God Bless you and I agree Thank God you were given a Dr in training🙏
My PCP is overbooked, eyes stuck on his computer, fails to reply to anything I say, office staff all start a the front desk and are "promoted" to MEDICAL ASSISTANTS🙄
Mrs. MD works in the office, handling billing and very unfriendly.
Lab results are never reported to the patient, unless by chance at a pending office appointment, or you call.
This type of practice didn't exist decades ago, now it's common place.
How many patients are falling through the cracks with missed signs of serious illness?
Since the pandemic, things have only gotten worse.
I'm truly unhappy, but fear that finding another MD will not make a difference.
I’m sending my love and prayers your way✝️🙏🏻❤️
Thank you so much, Leanne. I hope your future is bright and filled with life.
That trainee doctor sounds. So good 👍 and spoke a lot of sense x
What a wonderful woman you are. Listened to your every word. Ok that Dr learned but oh my gosh how all your symptoms were missed-especially the spleen and nodes. I'm so glad you're doing better! Love to you over there in Australia! Sounds like you're going to have that future 30 years you spoke about at your 60th birthday party!
So well spoken. Thank you!
You are your own best advocate. Sadly it may come when we are at are weakest but don't give up. Wonderful that you will now continue your journey with your family and friends, peace and health. I had a few Dr's who were upset with me when I brought my journal with my symptoms and questions , as my memory was being affected by the extreme fatigue but I also have a team of gems.
God bless you Leanne! Thank you for your courage to share your story. It will definitely make me and others be more mindful of lingering medical issues the doctors might want to pass off as trivial issues. I do hope and pray you are in remission now! - A Friend from Texas
Thank you 😊
I had a PET scan 2 weeks ago and I’m still cancer free. My son gets married in 2 months time and I’m so excited to be healthy and well for that! Best wishes
I know how you feel. Just went through a year of bad advise and misdiagnoses Still going through so much and still don't know what's wrong. Thanks for your video.
All these symptoms are exactly the same as the autoimmune disease Sarcoidosis. I have this. By needle biopsy of my enlarged lymph node the result came back as lymphoma. It has happened before. Eventually I had a surgical biopsy of the lymph node and the results were Sarcoidosis.
Advocate advocate advocate for yourself. Absolutely! I had a similar experience starting at age 35, and that doctor told me it was all in my head. Fast forward two years they find a small lump near my breast. By this time I was suffering from pneumonia and bronchitis constantly. They sent me to see a therapist and the therapist told me unless it was something organically wrong with me I would never get well. I asked a friend what that meant and she says that means if you don't have something like cancer. I took my mammogram imaging and I ran to the cancer center looking for a second opinion.. within a few hours they knew immediately that I was facing either Non-Hodgkin's lymphoma or AML. I had weeks to live, it was everywhere but the liver. I ended up getting treated for Non-Hodgkin's lymphoma, and in ten months I was in remission and still am. The Doctor who told me it was all in my head , ran off and never returned to his office. No apology, nothing. Sadly about 6 years later my brother passed away from the same cancer. I'm resilient, and that helps fighting a horrible disease. 26 years later the chemo is aging my heart, kidneys, lungs and I have 3 autoimmune diseases. If I had to do it all over again I would. Advocate advocate advocate for yourself, no one else will.
Medicine is not an exact science. In the end be your own best Dr.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
I am so grateful for your story on youtube. It is so important for us to advocate for ourselves. Much love...
Thank you so much. I need to hear this. ❤
Life is very short and I think people are best suited to try and ponder over the purpose of their creation and prepare for that part of the journey. The hereafter is eternal . It’s no joke ! People really are deluded from what really matters. Death is inevitable and we only are given one opportunity to contemplate and prepare for what will happen next. I was diagnosed with cancer at 37, had a heart attack 48. I know that tomorrow is not promised and I am doing my best to try and stop living for this worldly life and start investing in what is ahead.
Check with Jehovah’s Witnesses for further help in understanding what you expressed, free of charge they come to your home to help comfort you from God’s word.
God bless you and hope that you recover soon. You are beautiful and strong.
With cancer rates so high nowadays, one in 5, you would think doctors would take peoples symptoms seriously???
Exactly this makes me so angry
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
@heatherjackson2520 if youre in the U.S., try to find a nurse navigator. Many cancer associations have hotlines that offer assistance, especially lymphoma societies.
Thank you for your story. I feel so much better having to wait over a month to see a specialist and still have not gotten a appointment
Your story breaks my heart and similar to my own of 3 years! You’re such a beautiful brave lady and I send you prayers and hope for the best outcome!
Best wishes and thank you for sharing your experience 🌷
So well explained.
Your situation is not unusual in terms of doctor indifference and them being rushed. I had a PCP tell me to look toward the East every morning to assuage my grief of losing my husband. I found a new doctor. Still your situation was dire and you waited a long time to be diagnosed. My heart goes out to you. You provided a succinct, compelling presentation of what you went through. I hope you continue to be healthy.
I’m so sorry you were misdiagnosed and pushed aside for so long. I think that experienced doctors seem to sometimes lose touch with why they became doctors in the first place. They stop trying to connect the dots and really narrow down what is ailing a person, even when blood and imaging tests point to something being wrong. I saw a doctor a few months ago for chest pain and they ruled out cardiac and blood clot issues in my lungs, but when I looked at my blood test results, it was obvious that I had an infection as my inflammation markers were abnormal. That was not mentioned at all when I was spoken to about my diagnosis. I took myself to urgent care the next day and was diagnosed with flu A and B simultaneously. I told the doctor about my diagnosis and she apologized. Absolutely a classic case of having to advocate for oneself. I hope you get well soon 💗
Thank you for sharing your journey. I think you are an amazingly strong woman in so many respects. Your forgiveness to the medical profession is admirable. Yet so necessary for you. I feel many people who will watch this will push for more instead of accepting. Bless you going forward.....
OMG your so amazing. So sorry for what you have been through and are going through. Praying your strength will see you through this and for the best of health for the future
You are such a delightful person. Hugs and prayers
Thanks so much for sharing your story, I find it interesting that it takes so long for doctors to reach a diagnosis. I’ve experienced this so many times that I hesitate in going to see my doctor just to hear those dreaded words, “well looks everything’s normal”, when you know it’s not! By the way, your clothes are beautiful 🌹
Thank you for sharing. You are awesome.
You are such an inspiration and such a delightful person. Thank you for sharing your story.
Great Story & Retelling, Thank You!.
i’m sending my love and prayers your way✝️🙏🏻❤️
Here in the US, they suck too. About 15 teen years ago. I became very sick and went to my doctor he ran some tests and said he didn't know. I went home, then one month later. I was hospitalized for weight loss of 73 pounds . At the hospital I was told I was a hypochondriac and that they couldn't find anything wrong. 2 years to the day I was hospitalized again with over 100 lb weight loss and teetering on the edge a life-and-death. I was transferred to another hospital where they had a Disease and Control doctor available. When he walked into my room he told us that he believes I have a disease called lupus and that he would be running the test to show that lupus is what I have. 2 Days Later after a four-year battle with doctors telling me it was in my head that I was actually diagnosed with a disease called lupus. Lupus is an autoimmune deficiency disorder where your body fights itself it considers your body of foreign object. There is no cure for Lupus.
Oh my. I'm sorry to hear that 😔 I hope you are as comfortable as you can be. Sometimes the medical profession fail miserably. You deserved so much better than that.
Shellie, I am so sorry about what you are going through. There is a doctor named Dr. Brooke Goldner who had lupus beginning when she was a teenager. She became a doctor and healed herself, and now she helps others with chronic illnesses, not only lupus but other autoimmune diseases as well. I wish you all the best.
@@elizabethhollar1159 There is no cure for lupus.
@@kathleenmaloney915 Lupus is one of over 80 different autoimmune diseases. None are curable. I have PsA and am now being screened for lupus. I am also having a second CT scan for possible lung cancer. So many symptoms overlap--loss of appetite, weight loss, fatigue, shortness of breath, almost daily low-grade fevers, and more recently a nighttime cough. Fortunately, ever since my PsA diagnosis (which took 3 years to get), I have assembled a wonderful team of specialists. But that was after firing my primary care doctor, a neurologist, dermatologist, and rheumatologist who were not listening to my concerns or would refer me to someone else.
@@jodybogdanovich4333 A lot of bad doctors. You may want to ask to be tested for Sjogren's. Before I wa diagnosed, I was told that I had emphysema. CT can showed inflammation and scarring of the lungs due to ILD. I did not believe that I had it. Saw two different pulmonary specialists--both said autoimmune diseases do not cause lung scarring. Sjogren's and Sarcoidosis are two that definitely do.
Thank you for sharing your wisdom. What a journey!
It took over 3 years to get a diagnosis for me. The last 3 months were just rediculous. Physically I was going down hill. I would try to eat and it felt like I was trying to swallow gravel. I went from 170 pounds to just over 100 pounds in 3 weeks. I was told to eat more.
The huge lymph under my right arm, the lumps in my throat, and the scan showing something growing on my liver should have been enough to send me to a specialist.
I called the ambulance for myself. After a torturous time in the local ER I was sent to the big city. I was done I did not care to live any longer. I was just 100 pounds. They weighed on the gurney. I could not stand.
Aggressive Large B Cell Lymphoma. Finally. Something.
There is so much more of my story and it would take up pages to tell it all.
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed
I am so sorry it took you so long to get diagnosed. Hope you're well Leanne ❤
You are a beautiful person inside and out!!
Thank you for sharing your story
This!! This lady is a tough woman, so glad she seems to be doing better! The fact she actually went back to that GP is so impressive, also important for the healing process, hearing a sorry, but also, for him to learn from his mistake, and that it's just not a bump in the road, but a human being in flesh & blood you are dealing with, wanting to get help when feeling unwell. Overworked may be the reason, but still, it could be a matter of life & death and when swearing the Hippocratic oath, you swear to, if not cure, able to ease for the patient and help..if you cannot do any of this, but dismiss the patients, then there is something major wrong with the system.
Your story is a bit like mine. You have given the best message I have yet seen and that I can think of for others who will begin this kind of journey too.
I was done to me!! Even though I kept telling them something was wrong they failed me. My liver doctor said I had a low level of iron every time I saw her. She said tell your gp to do a battery of blood test. It took her 2 different times of seeing her. Finally I raised my voice to her and she said ok. I have multiple myeloma... we all really have to advocate for ourselves. Speak up, yell if you have to!!
I went through a similar journey as you. I knew for about 8 years and I kept being prescribed antibiotics and antidepressants. It wasn't until my tumors were big enough for the staff at my hernia doctor's office to find with a sonogram. It was only after that that my non-hodgkin's lymphoma was diagnosed. It really does feel like you are going crazy. Cannabis kept me mostly sane through much of it. I still have a year of chemo to go through and so far so good. Stay strong.
NO ONE TALKS ABOUT - 1] what happens down the years with those hard medications. They might say that they are cancer free But they do not say for long they are cancer free and when did they find out that they have no cancer. 2] Currently doctors’ practices changed to be standard typical treatments which they apply to every patient - They themselves do not know how to think outside the box. Which is harming so many people? 3] Many agriculture and meat contains Pesticides and now-a-days these type of things diseases like cancer and dementia, muscular, Tendonitis etc. are popping up like popcorn. Nobody is taking any action against those people who are providing these foods in market. Those who get the diseases - they get occupied with their internal health issues so their ability to fight gets limited with outside world. Those who survives for little longer they will think I have just touched near death experiences so let me live my life to fullest and matter for original cause of problems are not address. IN NJ they have found 500 plus cases of dementia in kids. Those kids parents should take action. This has become a game and for some doctors a play book game. I guess that is why they call they are practicing on you. At cost of your health they are practicing on you. 4] IT shocks me when doctors tell that all medicine has side effects and if you do not follow the rules which they created they cannot help. Clearly they do not want to think outside the box. 4] Radiation has so many issues with it - while taking even if you breathe it changes the position and wrong side get radiation - which means if you have on left side under you heart - your heart muscle can get damaged. Why cannot do Open surgery to burn the lump or tumor etc....Why they are risking patients life to get damaged to other organs. WHY???? They are brain washing you with each medicine they put out in market - So pharma co makes profit at cost of your health.
I was diagnosed with lymphoma in my spleen yesterday. I was also not getting the proper care from my Doctor's and several emergency room visits. Finally a Doctor who actually cared, dug deeper and put all the pieces together. I'm mad so many Doctors basically blew me off but, morbid or not, am happy to finally find what's wrong with me.
What were your symptoms?
Praying for you that chemo therapy is successful for you! I had non Hodgkin’s lymphoma stage IV in 1980 had CHOP chemo therapy and I’m 62 now! Unfortunately I was diagnosed with Cholangiocarcinoma April 10, 2023 not related to lymphoma! Prognosis isn’t good they couldn’t get all the margins! I am going to do radiation therapy and start an oral chemo post radiation to slow the progression and give me more quality time hopefully with my family! Praying for you the treatment for lymphoma is very promising God bless you 🙏
well told. Glad you are recovering.
That is exactly what my dad had. Large B cell diffuse non-hodgkins lymphoma. He had it twice. He was in remission for about 7 years, so that was good. I stayed with him 24 hours per day for his last 10 months.
Thank you for sharing your story. xx
Oh, I can relate. It took 13 stabs for them to get an IV for my colon cancer surgery. It’s an alternative universe. It really is. Life goes on for most people, but there are some of us that go to cold, dark basements for radiation, and sterile rooms for chemo infusions, and of course, surgery. Slash, burn, poison. That’s where we are. So glad you FINALLY got diagnosed, and I hope and pray for a full recovery. All my hopes, thoughts, and prayers are with you. Much respect for telling your story.
From Virginia, USA, Mike
Even severely dehydrated, I can’t imagine it would take them that many pokes. I hope you are enjoying full recovery.
Thanks for sharing your story. May God Continue to Bless You. Peace and Love from NYC 🙏🏼💜
You are intelligent and courageous, many patients, especially women, are not paid much attention, when they complain about symptoms, that could be very important, in diagnosis of their issues, best wishes to you.
Thankyou for your story, I myself at the moment are going through trying to convince my Dr about my cough being at the back of my throat, and coughing constantly
Your story is a tough one, but I´m so glad for you that you have been such a good advocate for yourself and that you were lucky to find that young doctor who took the time to look at the full picture and also to be empathic. While I understand the lack of time doctors generally have, I find it unacceptable that too many tend to dismiss whatever symptom we might have as something not serious and/or something that we ourselves caused and could do something about.
Well done to that trainee doctor
Thank you for sharing your story.
Leanne im sorry you had to go through this i pray tou will be in full remissions in jexus mame be strong
Sorry you had to go through this I’m trying to get diagnosed now and finding the doctors so arrogant and complacent it’s so upsetting a doc said to me the other day your digging too deep and I said I am I’ll and trying to find out the cause so I can treat it So upsetting !!!! Stay well ❤🌈🙏
Very intelligent woman, wish u the best of luck
God bless you ❤
Thank you so much for this video. This makes me want to advocate for myself even more. I’ve been having fatigue & severe joint pain for months. My GP prescribed a week of corticosteroids & an NSAID cream and was told to take ibuprofen for pain after I told her ibuprofen didn’t work. She did blood work & my uric acid levels were a bit elevated. Tested negative for RA. The only thing she wanted to prescribe was allopurinol. I read the side effects & also read that it does absolutely nothing for pain 😢. I was floored. I guess I’ll be looking for answers all of 2023 🤷🏻♀️
I suggest you ask for a referral to a rheumatologist, those are symptoms of autoimmune diseases and there are medications that aren't narcotics that not only help with discomfort but also stop the progression of the disease which is the most important part
It’s good they apologised but they have no right to be dismissive in the first place. It is so frustrating and distressing to have to fight to be heard when you are already in such bad health, it makes you so much worse and more ill. Doctors need to start being held accountable especially for the people they accuse of being a hypochondriac when they are literally on the verge of death and trying to get help. I don’t see how this isn’t getting better or why it’s even still happening in this day and age.
I agree with you. But sadly that doctors don't take the patients seriously is so common now.
It's always being struggling to be heard or taken seriously.
Seems they want to probe there's nothing wrong.
@@lillyrocks2011ikr it’s disgusting
I'm at 5.5 years and yet to find a doctor to take me seriously. More symptoms by the month it seems. And I'm no longer physically capable of advocating for myself because they've caused me to have extremely severe complex PTSD from gaslighting and I have nobody left in my life for the same reason so I guess I'm screwed