Kidney Cancer Patient Speaks Candidly With Her Oncologist
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- Опубліковано 11 чер 2024
- Chromophobe and Oncocytic Tumor Alliance (COA) kidneycoa.org/
@chubbyemu's video on my case ► • What Was Growing In He...
Big Data Paradox (outlining methodology behind my case) ► • The More Data You Have...
My Story (Playlist) ► • My Story
Dr Pavlos Msaouel: faculty.mdanderson.org/profil...
Video produced by @chubbyemu
Production Assistant: Nick Brown
Timestamps
0:00 Introduction
0:11 How do you approach new patients who were diagnosed from the emergency room?
2:25 Patients who get biopsies in more than one organ
7:07 Safety in regards to biopsy
10:08 We are becoming more granular in describing cancer
13:40 Seeding risk during biopsy
15:26 (Kidney) Cancer subtypes
20:46 Difference between community and academic cancer centers
26:13 Trials for different kidney cancers?
30:32 How did you determine the treatment I needed for my case?
34:27 How did you determine when surgery was a viable option in my case?
45:30 Patient-Physician communication of treatment goals
50:00 Why was I put on active surveillance after surgery?
53:31 Would my course have been different if I had a different kidney cancer?
56:45 If my cancer came back, what would the approach be to the next treatment?
59:25 Why do some cancers have more clinical trials than others?
1:06:55 The importance of patients knowing their cancer subtype
From Chubbyemu.
Same. She’s a fighter 💪🏽
Same
@@hellskitchenkritterandfrie3372 yes most definitely
I came here from chubbyemu. Thank you so much for being willing to share your story. It’s extremely difficult when you can’t get people to listen or you have a rare medical condition and it gets extremely frustrating. I love that you’re trying to champion getting more attention and research in this particular field because of your own experiences. I will keep my fingers crossed that you achieve full remission and never have to deal with any form of cancer again, so you can continue doing your great work.
Same here
Just saw your case on Chubbyemu, well done beating this freak of nature and wish you all the best, healthwise and UA-cam wise!
Thank you so much!
@@katiekickscancer_kidney Greetings from Singapore - Hope you are well.
Ditto.
@@katiekickscancer_kidneyI'm so glad you okay
Hi KC, I came from ChubbyEmu who made a video on your case. As a cancer survivor myself, congrats on making a recovery!
Thank you my fellow survivor! Hope you're doing well too.
@@katiekickscancer_kidney I'm doing as good as my body will let me. I do have some lingering side effects even 32 years in remission.
Congrats KC...welcome to the survivors club, I was diagnosed with FSGS (extremely rare) in 2009, all expectations led to end stage renal failure by 2014...and yet I'm still alive, I was sick for an awfully long time...I take 8 meds daily...my condition is now in remission , I wake up every morning amazed and feeling better now than I have in the past decades 🤩
Hi Katie, I'm here from ChubbyEmy... Congrats on recovery... I recently lost a loved one because of Uterine cancer, and I know how bad it hurts! While watching your case on his channel, I was actually sobbing for you... Nobody should suffer from cancer... It's really terrible... I got really happy when I found out that you survived the terrible ordeal... Have a Healthy and Long Life!
Thank you so much. Cancer isn't someone I wish on anyone but I know how so incredibly fortunate I am to still be here. Thank you for the kindness and sending my best your way. I'm very sorry to hear about your loved one.
KC i wish you good health
Your story was epic
Here from Chubbyemu
Thank you!
So to generalize, the patient knew more about her situation then the doctors were willing to entertain due to their own arrogance. Then you finally found ONE doctor that would actually listen and then you still struggled to convince the whirlwind of professional arrogance in the chain but ultimately got the treatment you ALREADY knew you needed. The US medical system is broken and so is the insurance bureaucracy that surrounds it. I am grateful you finally got the treatment you needed and actually survived the process of getting there. You're not just a cancer survivor you are a bureaucracy survivor.
My daughter whose name is also Katie had a red herring symptom of headaches accompanied by stomach aches. They focused on the stomach but missed the “hooves” also. The headache was indeed brain cancer. With St Jude’s CRH help, she kicked cancer too.
Katie, you are so amazing. Not only did you beat this insanely rare monster, but you also are advocating for more understanding so someone doesn't have to go through what you went through.
Thank you so much - I feel incredibly fortunate to still be here and want to pay that forward in anyway I can.
Your health battle brings emphasis to the fact that wether a person is trying to diagnose the problems of a person, an animal, an automobile or a computer it’s important to be able to think outside of the box and don’t let your mind be completely rooted to mainstream beliefs.
This doctor should have his own channel.
Hi Katie, another viewer from Chubbyemu. Your case brightened my whole day. All the best for the future! And what a charming and knowledgeable doctor.
Thank you!
Also EmuCrew checking in. Your story is incredible!
EmuCrew, love it 💪
Thank you!
Came here from Dr. Bernard (aka Chubbyemu). So proud of you for fighting the cancer off. Life gave you lemons you made lemonade by creating your organization to help others.
Hi Katie! Congratulations on beating cancer, and a rare cancer at that. You’re a beautiful, intelligent, and very brave woman. It’s inspiring to see you advocating for yourself, and not give in to the false narrative that everything is just anxiety.
The fact that this page exists and I can reach out to you warms my heart. I watched a video about your ordeal on Chubby Emu's channel and the whole time I was watching I kept thinking: "Please, let her make it through this!" Often there is not a happy ending for his videos, particularly those where the patient has such a complicated diagnosis. The one thing that really shocked me was the hospital not having enough blood. It never occurred to me that a single surgery on an individual patient could require so much blood. Was it just the pandemic that caused a blood shortage or is this a common occurrence for these types of surgeries? I'm so glad the community came together to donate enough blood for the surgery to proceed.
Thank you so much for the kind words and the support. The pandemic definitely contributed to the blood shortage but they also were requesting a lot of blood for my surgery. More than I think they typically may because of my bleeding disorder. They're very thorough at the NIH and they wanted to make sure they had a plan in place in case of a catastrophic bleed since we were operating on two vascular organs and my bleeding history. I've very grateful for the fact that I only ended up needing a couple of the units and the rest was able to go to others who needed it. I couldn't be more grateful for the generosity of all of the wonderful people who donated.
Saw your case on Chubbyemu, wishing you all the best!
thank you!
From chubbyemu💯
all the best wishes. glad you survived and appreciate what your doing with your charity work now.
Thank you so much!
I LOVE YOUR ONCOLOGIST! He is so very well spoken and in a language us non dox can understand!!
He's pretty great
MD Anderson couldn’t save my mom but I’m so happy to see their research efforts saving others including you!!!
Just saw your case on the Chubbyemu video.
I am so happy that you were able to recover against seemingly impossible odds, your struggle is truly inspirational.
Hope you have a long and healthy life.
Thank you so much, this means a lot to me. And thanks for coming over to my channel and taking the time to drop this comment.
From Chubb’s I’m happy for you
thank you
I'm glad and tearing up to hear you recovering and beats the crap out of the stupid cancer. As my mother she has diagnosed with stage 3 Overian, not with ease hundreds of hospitals visits finally one can really find the problem. Every other visit all said the same thing everything looks good to them. Don't give up be your own advocate!! Long story short she is recovering good and she is a thought fighter too!!!
Absolute Congrats on beating cancer, so glad to find out about this!
Let's face it, we all came from Chubbyemu, and we couldn't be happier to see an actual case who survived to tel her story, stay safe and b well K C.
KC presenting to the emergency room.
Thank God you are okay. I spent July and a coma and I died for 10 minutes in front of my wife and daughter life really can change at the drop of a hat. I'm so glad to hear that you are okay.
Sounds like you have been through quite the ordeal yourself. Life is so incredibly fragile. Glad we're both here to enjoy more of it. Sending my best to you and your family!
Your story is really incredible. Glad you whipped that cancers ass. I can see all my fellow chubbyemus here😂
Thank you and y'all are quite an amazing crew. :)
Hey Katy , I’m one of the many here from hearing your story. 🎉huge congratulations and well done on being you’re own advocate and beating this. You are an inspiration!!!
Thank you so much!!
Obligatory registration of attendance from Chubbyemu!
Wish you good health and UA-cam Career!
As yet another person here from Chubbyemu, I find it delightful, in a "small world" kind of way, that your oncologist is Dr. Msaouel, since he's also been in at least one Chubbyemu video.
-emia meaning presence in blood
I just watched your case on ChubbyEmu and was so impressed how mich strength you had to investigate so much, drive to many different doctors despite them telling you they will handle it. On top you started your foundation, all the while having terrible symptoms of the cancer. If more people had this much initiative the world would be a much better place. All the best from Germany Katie!
I’m so proud of you for being your own health advocate. I’m a nurse and there’s a lot of critical thinking involved in most everything I do. One of the easiest things about my job is believing the patient. So many in healthcare try so hard to disbelieve patients and try to “figure out” what’s really going on. You know your body better than anyone on Earth. You know when it’s not anxiety or period pain.
Chubbyemu brought me here. What a crazy ride, I am glad you are doing well given all that you've gone through.
I agree - it's been pretty wild. But thank you so much, I feel truly fortunate to be here.
Katie you are a real life superhero, much love from europe!
I hope you remain in good health, KC. I wish you good luck in life. Live well.
From Chubbyemu
I was listening to Chubbyemu's video and genuinely did not believe anyone could have gotten through this, I was so shocked to hear that you're well and even on youtube! All the best wishes, you're amazing
Thank you so much. It was a wild ride and there were actually even a few more bumps not featured in the video believe it or not. I'm actually writing about it in a memoir and donating all proceeds to research from. It's been a pretty crazy two and a half years but I couldn't be more grateful to still be here.
Glad that you were able to make it through and shed light on a rare form of subtype of cancer.
thank you
Hi Katie - I have seen your case by Dr Hsu, and as a medical researcher in pathology I was fascinated, but as a chronic pain/invisible illness patient, who has just been diagnosed with the cause of my long standing pain and fatigue requiring urgent surgery, I thoroughly empathise with your situation. Its patients like you that prove that physicians need to abandon the default diagnosis of "anxiety" or "depression" when they THINK they cant find a reason for your symptoms. The common factor in nearly every case that ends up like yours, is a failure to do the appropriate imaging when the patient first presents. This leads to a an unnecessary and prolonged, drawn out diagnostic process, often by which time the condition is far harder to treat. If any one of those physicians had carried out a basic ultasound when you first presented, think of the months and years you would not have lost to this. Congratulations on surviving a very aggressive form of cancer and starting the foundation - I wish you all the best.
I may or may not have just spent 2 hours in the chubbyemu comments looking for this comment because I thought it was over there. This was one of my favorite comments to read. I think it's awesome you were able to see my slides! It's on my bucket list to see my own in person some day. I'm so sorry to hear you've dealt with some of the same issues and am wishing you a speedy recovery from surgery.
Sending you all the best and thank for taking the time to comment.
@@katiekickscancer_kidney Part of the problem, and I hope here Dr Hsu agrees, is in part their medical training. They are taught too heavily about "anxious people develop symptoms", and have you noticed that everyone who has ever been a case point for a "mystery diagnosis" case study or episode, ALL starts with a total dismissal by the doctor as stress, anxiety or sleep deprivation. Worse still, the string of physicians they have seen, rarely ever get told later on, that a specific patient they dismissed 2 years ago as being just "depressed" or "stressed", was eventually diagnosed with something very specific and dire, and this creates in doctors a big sense of warped confirmation bias. Because the medical profession does not require every doctor to be informed of their mis diagnosis when someone is finally diagnosed with something serious, the doctors miss an opportunity to grow and learn, and worse, it ingrains instead their sense of being right. "Do you know how many people come in and are just stressed...?", but if no one went back to tell them, they will think half the population is just stupid, a hyperchondriac, or attention seeker.
So if there is one take away I would change in the medical profession, is that when someone is formally diagnosed with something, but has been dismissed by a string of doctors in the meantime fir what ever reason, I feel mandatory notification should be put in place, and in some cases, re-education of doctors. In th US, one simple change to the way billing is done, would be, like they have here in Australia, to have mobile, small ultrasound scanning devices freely floating around every medical department, freely used without guilt or long billing processes. Because - the reality is most doctors dont do a lot of simple tests with good equipment due to costs. Yet one ultrasound 2 years prior would have changed everything for you. For me, it was every blood test imaginable over a whole decade, except iron...and it turns out I languished in bed with severe severe iron deficiency that had gone untreated so long, my entire body was non functional. But doctors became fixated on my weight, and refused to see beyond that. It was going to a DIFFERENT naturopath who pulled my medical files and saw not one iron test in over 13 years, so said "lets do that FIRST, then see..." OMG. The cause - severe diffuse invasive adenomyosis, Ive been bleeding internally for - 15 ? years or more each month - and is why i look 7 months pregnant - aka "fat".
Sorry I have a lot to say here on this, I now counsel patients with chronic severe invisible illness and those with terminal illness, for free as patients have no where to turn. At least I can put my pathology training to good use for others. I cant change a system, but I can help patients...one at a time.
_Came from chubbyemu! Bless you're recovery! I am very thankful for these medical professionals, we truly put our lives in the hands of strangers and I'm very thankful to all of them that work hard for the service of humanity_
Also from chubbyemo, subscribed and a comment for the algorithm.
Also so admirable how you pushed through with what you went through! Savior for those who might have the same illness in the future.
Thank you so much, that really means a lot.
I saw your case on Chubbyemu today.. Kudos to you for not giving up.. and for learning to have faith in yourself (because it is a process).. Wishing you the best..
I am happy and grateful for your recovery. When I watched the video from chubby emu, I really started to worry about a not so happy ending. Congratulations on your recovery!
From Chubbyemu, I’m very happy that you are a survivor!
Hi KC! Saw your story on Chubbyemu and wanted to come by here to congratulate your on your path to recovery. Stories like yours are exactly why the medical community has so much to learn and hopefully, improve in the science of detection and treatment. Thank you for being a strong advocate for your own health during your own case and now expanding it online as well!
I hope to pursue medicine one day and I love learning about stories like yours to see how tackling a disease involves close collaboration between patient and doctor. Wishing you all the best and hope to see more of your videos!
Here from Chubbyemu, so proud of you for fighting for yourself and others!
Thank you!
Congratulations on your recovery. Prayers that you one day forget that you had cancer. I had stage four testicular cancer in 2007. I was left disabled, but I am alive. Best wishes for your future.
Hi Katie I have just seen your video from Chubbyemu. You’re amazing and congratulations on your recovery from Sunny Scotland 🏴
Chubyemmu Army...
Glad you made it. Hope you live a long healthy life.
Some other weird channel with some guy, Dr. Bernard, sent me here! 🤪🤣
Congrats on taking your health into your own hands and beating the 💩💩 out of it!! You are amazing!! 👏👏👏👍👍🙏🙏
Chubs emo he sent me here. Very nice. Great success.
Heard of your story from ChubbyEmu channel. Thank you for sharing your story and congratulations on beating this awful disease! My wife is currently fighting cancer. Every day is a challenge and we're never giving up. I don't just have faith I know for certain that she's going to beat it.
Thank you so much. So glad your wife has you by her side like this. I know it's not always easy and you as caregivers go through so much as well. But she will remember and cherish these moments. I know I do. I don't know what I would have done without the support of my husband who took a very similar stance next to me. Sending my best to you both.
So happy to hear you are a survivor. I wish they would tell people about keto and fasting
Congrats on overcoming your illness!
Chubbyemu brought me here.
So glad to hear you are well now. God Bless ❤
I'm an endometrial cancer survival since 1/12/2011. Thank you for being open with your story.
Hi Katie. I got here to you after seeing the chubbyemu video of your case..... thank you so much for sharing..... this is extremely helpful...... you are AMAZING!!!
Your case is literally every hypochondriacs worst nightmare and you fought it like a champ!
Im from Chubbyemu and Congratulations on pushing through my grandpa had cancer for 20 years and stay healthy
I was just diagnosed with kidney cancer. Is this woman still with us? Does anyone know how she is doing? I really hope that they develop new treatments for people with this horrible affliction. To anyone dealing with an ailment, good luck and hang in there! Enjoy every day.
Thank you. So much valuable information for those of us dealing with rare or unclassified RCC.
So nice to hear a cancer survivor story. Just went to a celebration of life for a childhood friend who wasn't so lucky😢 go do good things girl!❤
The blood donates from social media was epic
What a wild story, I'm glad youtube led me here and I'm very glad you're okay Katie!
Me too! And thank you 😊
❤I came from Chubbyemu, I am excited you fought so intelligently. Thank GOD, you had a wonderful outcome!
From ChubbyEmu, so glad to see that you are well!
Hi Katie, I’m in tears because of your experiences. You are such an inspiration and your story restores my faith in humanity and medicine.
I would like it if you could talk about you feel about the medical system overall. Do you feel angry or resentful at all that GPs didn’t take your concern seriously at the beginning?
I’m coming from the ChubbyEmu video where Doctor Bernard emphasized your experience bouncing from one doctor to the next before they took any real action, it seems irritating to say the least.
Thank you so much and absolutely, I'd be happy to. I'm hoping to make a video on this soon. I'm not resentful or angry toward them at all actually. I'll make a video soon to share more in depth why.
Your Strong well done fighting this Champion 🏆❤️❤️❤️
Thank You for sharing your experience, for my basic education of cancer from your focused decision making concerning your health.
Hello, Respect for your fight and happy for recovery. all doctors in first hospital should be fired omg and Im saying this as a APRN myself. (based on chubby video)
I am so glad for you!
Thank you, and thank the doctor for sharing. Wow, we learned so much!
You are brave. However it's sad how negligent the healthcare professionals were at the beginning of this ordeal
Great interview. Learned a lot.
So happy for you, Katie!!!
I resonate so much with your story. I also have a rare cancer, although not nearly as rare as yours. I have Stage One (hopefully) Extranodal Undifferentiated
B-Cell Non-Hodgkin Lymphoma.
It’s lymphoma, but it’s not in a lymph node-it’s on my bone.. Specifically at the small concave place on my scapula , the part that forms the socket of the shoulder joint.
There is no metastasis according to imaging.
Chemo treatment didn’t work; the tumor tissue didn’t shrink and actually “glowed” more, indicating increased “activity.” But strangely, it seemed to have made my long-time chronic headaches slightly less frequent.
I just finished a month of radiation that not only eradicated 99% of my shoulder pain, but also eliminated the chronic headaches I’ve had for more than a decade.
I’ve had chronic headaches for at least 15 years, and before this radiation they had gradually increased until I had one almost every day. I had been working with an ENT for my headaches. I also had weird sinus pressure issues, hearing loss, and congestion. All worse on the left side, where my tumor was (hanging out in my shoulder joint.
The headaches MUST have been caused by the lymphoma. So, have I had lymphoma for a decade or more? I think probably yes. My oncologists both seem to agree.
At my last appointment with my kind, funny chemo-oncologist, who kind of looks and sounds like JR Ewing, the Physician’s Assistant asked me about my shoulder. Was there any pain? I said, No, not really. Only a tiny twinge occasionally if I move my arm in an unusual way. But no more headaches. None. “ I’m not worried about your shoulder,”he said. “I’m worried about the rest of you.”
That cryptic statement has been bugging me. But at some point this morning it suddenly occurred to me- he was probably talking about metastasis.
My Ukrainian, Harvard-educated radiology - oncologist has scheduled my next PET scan in a couple of weeks, and then, a few days later, I will find out the results.
I wasn’t scared before this morning, but now I’m a little bit scared.
Seeing your story online this morning inspired me to write about my cancer. It’s been therapeutic to tell my story. Thank you. 😘
Best wishes,
Ellen
im so happy you're better. 😌💛
Here from Chubbyemu channel and just wanted to say you are a fighter and commend you for advocating for your health.
Hi KC! Came over from Chubbyemu and wanted to say thank you so much for sharing your story!!!
The kind of doctors we need 🙏
Just saw ChubbyEmu and as someone with serve kidney issues (They're so painful) it was striking to me, I have week long headaches, my resting heart is 140 and my blood pressure has reached 217/130... I don't have cancer, we still don't know what's really going on, but I have had a lot of issues with my kidney since i was 17, I'm 38 in a few days. I'm so glad you're over this, and not going through that hell, I can't imagine!
I hope they are able to find some answers for you soon. Being stuck without answers and no resolution is so incredibly tough. Sending you my very best and thank you for the kind words and support.
Hi Katie,
I wish you a long healthy life! You are brave and beautiful.
Amazing story and glad you survived! Stay strong and healthy :-)
May your life be happy and long. Your web site will help others to understand what they or loved-ones illnesses they may have...
Very interesting ! Learned a lot. I wish you the best Katie.
This is excellent -- one of the best KC videos.
Your story is so inspiring. I hope it helps others in a similar situation.
Damn, you are really amazing for fighting so much. I wish you all the best
From Chubbyemu. Thanks for this.
I wish you the best katie. Thank you for sharing your battle to us. I'm glad you survive from it :)
Just saw your case on Chubbyemu!!! Greetings from the Netherlands 😀
Thank you Katie for the great video. You asked the right questions. You have helped me a lot as a kc patient. My wishes and prayers are with you for a great health for many many years to come 🙏❤
Watched your amazing journey on Chubbyemu. What an awful ordeal you experienced. I'm so happy for you and your recovery! All the best in life and health going forward ❤
Omg this case brought me to tears. So glad to hear you made a recovery! ❤
Thank you so much
What a rough road you traveled. So good to see you here. I hope everything is great for you for a very long and healthy life. I struggle with tabacco and although I have never been sick from it I do understand I could be. Your journey is inspiring. I will keep working at my problem and not be so dismissive.
a truely amazing story, i cant believe going through all that pain, u really kicked the cancer!
amazing story! here also from chubbyemu!
Wonderful episode - I’m a newbie but I found this discussion fascinating. Thank you both ❤
Here from Chubbyemu. Great conversation, good luck on your channel and COA!
Thank you so much!