I had 5 tumors from 2 and a half to 10 cm in my breast, 37 lythnodes positive, removal of both breast, have bad lythodema had chemo then radiation then more chemo took pills hormone tablets and will take them for the rest of my life but im still here 10 years later! So their is hope! Dont give up!
@@trishloiacono8524 Thank you for positive I'm during chemo so I'm already soo stress about future I had mastecomy and 24 lymph nodes remove which 2 was micro and 8 macro .I'm glad you ok wish you the best from my heart ♥️
I just finished 15 months of Triple Negative breast cancer treatment. I am at peace with my future and walked this journey with God. If it was my time, I am at peace.
At 67, recurrence doesn't keep me up at night. The impossibility of working with a cancer "care" corporation that won't return calls or schedule appointments or treatments does. It keeps me a nervous wreck. Cancer is routine to this corporation, and if some of us "fall through the cracks," who cares? This is one of many reasons I won't do hormone therapy. I would rather die than deal with corporatized medicine for 10 years.
My experience has been completely different. I have the most efficient and caring team on my side. They made all appts for me and made sure my care is expedited in a timely manner. Do you by any chance have Medicare Advantage Plan? I've been hearing not so good things about the "Advantage" plans making things difficult for patients. They sound good, until you need them. I have the original Medicare and supplemental plan and I'm glad of it. I hope you've gotten some help and answers by now.
I’m a cancer survivor really your great I finshed my treatment 8years ago and ididnt know these information until Isaw your video why the doctor didn’t tell me that .Is it their fault or my fault .Do Ihave to ask the doctor or he has to give the all information I need to know. ?
@@marymarth7298 Depends on the doctors. Mine told me. Also, it's on you to do your research, educate yourself and ask questions. I go to every dr. appointment with a list of questions that I prepare in advance. Call your doctors and ask questions.
@@same5952in the UK that's pretty much impossible. We just get told "this is all I have" and they show an A4 paper with a handful of handwritten bullet points in short notes form. I asked **Alot** of questions: got zero answers to the important stuff. I,m not allowed a copy of my pathology results unless I do a subject access request, provide my passport, and a signed form, and it may take up to 3 months to receive. The doctor I spoke to didn't even know what ki-67 was, let alone if I was tested for it. He didn't know if my nodes had micro-metastases and/or CA cells found, just knew of the the one large node met. He couldn't even access my pathology report on a computer in another office -- it wasn't available to him. How can any of us research our condition when we're not being told anything; or worse being told wildly contradictory things.
I have lobular carcinoma as a young presey -- terrified of recurrence; and they they haven't got it all.... think my other breast has a lump, and during mastectomy, they only took 6 lymph nodes in what was meant to be a full ALND. The peer review evidence is that anything under 20 nodes removed fails to give accurate nodal staging. Plus, if I do still have a spot of lobular in the other breast, then chemo+radio is pointless, as it's been shown to not work as a neo-adjuvant therapy (and is hard to treat with adjuvant chemo too). I can't get access to my path report, so don't even know if my ki-67 score was tested, nor the subtype of lobular, nor the levels of LCIS (if any, low/no LCIS being a worse prognostic indicator). ..... I feel powerless to self-advocate with oncology: as can't read the peer review literature about what's happened to my body..... and if it just gets treated like hormone positive ductal, this may concern zero benefits with huge harms done. If my nodes haven't been accurately staged, as they only took out 6, how can I ensure the onco gives the correct amount of treatment? Different doctors in the team are telling me different things: one told me this was aggressive, another told me this was super slow growing; one couldn't remember the TNM criteria, another said I was wrong when mine is stage 3A (8cm tumour, one macro-met in my exilla).... my tumour was verging on fungating in two places, and 2 in the team thought full skin sparing mastectomy would be fine, thankfully my surgeon said "no, if I put in spacer, you'll have a high chance of skin necrosis during chemo+radio. Feel like I'm going crazy, and that the UK system of being opaque and dumbing everything down for patients, does more harm than good for those of us with some medical training: we're left tearing our hair out (pre chemo) as such conflicting information and it seems a lack of will to pass on the exactitudes of pathology results.
In 2008, I had a lumpectomy and removal of a few lymph nodes. The tumor was not E+ or HER+ had only a couple of P cells, that they told me was not enough to call it P+. The sentinel node was positive but the rest were negative. A week later they removed several lymph nodes from under my arm, which thankfully were all negative. Then it was breaky therapy followed by Chemo. 13 years later, my Mammogram discovered a lump in the opposite breast. The biopsy showed no invasive cells, however after the lump was removed and sent to pathology it showed invasive cells. When they retrieved some lymph nodes, luckily they were negative. However my Onco DX score was 30. I’m in Chemo once again and then will start radiation followed by five years of a hormone blocker. I’m 69 years old and I’m not on any other prescription meds. I am very worried that another reoccurrence may be in my bones or other organs. I’m hoping you may have some suggestions for lifestyle changes that could keep another reoccurrence from happening. Please advise, Sandy
Thank you! I am doing well, just always concerned about a reoccurrence or other issues concerning all the treatments. But, I am doing well and looking forward to another beautiful Holiday Season! Wishing the same for anyone battling this disease or any other!
Do you often have stress or take soy supplements before and after the 2 cancer? My mom took natto kinase (a soy supplement) for treating high blood pressure for a year. then she got her2 positive breast cancer with er positive and pr positive.
I know I feel like an almost ...everytime I'm posed to get everything I work so hard for this happens or my son who has late stage Duchenne muscular dystrophy gets something. I have almost so many times now ....I'm tired...and as usual ghosted by so many ...cancer is scary enough for person who has it...I get that it's scary...but don't avoid them ! That part always breaks my heart as I experience the same when my son is sick. As for so called relationships...lmao all abandon ship...so many times I don't even bother...it's almost easier to go it alone...tired of trying to make everyone else feel better about it. My kids ❤️ of course I want to be positive for them...but everyone else doesn't seem to get how hard it is to hold yourself together much less shore them up for something that's happening to me
@@niseylee7796 Hugs to you, Nisey! You make the best decision for yourself, but I'm thinking of you! Hugs to you girlfriend, and let us know how you're doing,
I’m a 12 year breast cancer survivor. I just had my annual mammogram and a spot was seen followed by an ultrasound. I have a biopsy in 6 days and I’m nervous. Same side so no radiation. I have a feeling I’m about to say goodbye to the girls! 💔
@@nonyabiness4023 You will get through it. In 2014 had aggressive chemo, radiation and lumpectomy on tamoxifen still. I'm 57 and still here. Just be sure to TAKE the nausea meds while on chemo you don't need to be a superhero. Trust me take the pain med and drink lots of water. You'll be good 👍.
I already went through chemotherapy, lumpectomy, lymphnodes surgery, radiation, right now I am on my 12th treatment of kadcyla, my concern is tumor markers showing 74 , doctor has been checking every three weeks and continues going up, already had petscan and was negative
If you have oestrogen positive, ask about an FES PET. Also, do you have lobular? It doesn't form solid tumours, but rather strings, like cobwebs that wrap around and through structures. It's immensely hard to see. Your case sounds concerning with the increasing tumour markers. The lymph nodes gradually recognise cancer cells as being friendly, and therefore your body won't attack them: wondering if all your nodes were properly checked with the correct contrasts. Also get in touch with the Oxford university metabolomics study researchers -- if they're on their next phase, they may be able to tell you if potentially you do have something growing somewhere, hidden away, just not where it's hidden. I'm so sorry. Sounds like possibly something stray was missed, and that it's not shown up on the regular pet scan.
@@starieyes7390 :(( I am sorry . I don’t know it could be that fast. I hope you are ok now. I have been depressed for 3 months too. I pray every day and follow the treatment tightly with doctors but I don’t know much about future..
mine came back 3 years after my mastectomy to my chest wall ,i had radiation and now next week i am having a suspicious lump biopsied around the same spot.what does this mean for me ?????
And yet you guys hang the chemo bags giving patients false hope! Why? Huge profits! I was a hospice RN and was infuriated with what I saw for over 18 years!! You guys know EXACTLY what I am talking about!!
Hi Susie. Thankyou for your comment...I needed to read something that I also noticed during chemo...they gave me 16 rounds weekly..first 4 x red devil and the rest paxitaxel...my report shows that i had a very slow growing cancer. I believe I was over treated and I know chemo does not recognise slow growing cells. And they were bullying me for radiation. I am now very paranoid with the whole thing.
@@stephp7778 I understand totally. In fact, when I refused chemo, I felt 2nd class! A bit mocked. I did do radiation. 27 Burns. I had 19 bad lymph nodes removed. Radiation was very difficult for me. I had the best plastic surgeon in Dallas. He was my advocate and being an RN, I have never experienced a physician like him. I am 4 years out. I hate to warn patients about the over use of chemo etc but I saw it all for 18 years. We have rights as patients and should always be investigating. We should be treated with respect even when we do not generate an average million dollars for the oncology centers.
my mom was diagnosed with triple negative breast cancer 9 years back... MRM was done then along with 6 cycles chemo.. again she is diagnosed with breast cancer in other breast which is also triple negative.. MRM has been done.and now planned for chemo and radiation.. PET CT have been performed with no metastasis seen... but 22 axillary lymph nodes were removed all positive for cancer cells... so is there still a risk that cancer have metastasized!?
Thank you very much for all the knowlege it is very refreshing. In 2009 i was diagnose of stage 3 invasive ductal carcenoma estrogen + i undergo masectomy, chemo, radiation hormonal theraphy. Its been 10 yrs from my diagnosis. What lab should i underdo to determine recurence. I lost apetite and suffer back pains.
I have had no evidence of disease scans and ultrasounds done.At times I have pain in certain areas.I have read that the scans aren't accurate and sometimes there is a micro metastasis in places,that isn't seen by the test that are done.
No, it depends on your choice in partnership with your surgeon. I had double mastectomy for TNBC because I’m BRCA1 positive. I also had an immediate reconstruction and to be honest, I’m very happy with the results of the surgery.
I had 5 tumors from 2 and a half to 10 cm in my breast, 37 lythnodes positive, removal of both breast, have bad lythodema had chemo then radiation then more chemo took pills hormone tablets and will take them for the rest of my life but im still here 10 years later! So their is hope! Dont give up!
Mollymoo are u ok?
Yes I'm still ok thank you.
Thanks for giving hope for people who are suffering from cancer.. stay blessed..
@@trishloiacono8524 Thank you for positive I'm during chemo so I'm already soo stress about future I had mastecomy and 24 lymph nodes remove which 2 was micro and 8 macro .I'm glad you ok wish you the best from my heart ♥️
I'm so sorry to hear your news but please just know anything is possible, please keep in touch to let me know how your going xx
I just finished 15 months of Triple Negative breast cancer treatment. I am at peace with my future and walked this journey with God. If it was my time, I am at peace.
My mom is facing same, can you suggest me treatment taken by you
This shit is scaring me. Good lord I pray I don't have a breast cancer recurrence & I can be cancer free for as long as I live in Jesus name amen.🙏🏼
Amen
Amen
Amen
Amen.
Amen
currently going thru this....seems like its all a guess with no guarantees.
This is my biggest fear. I get thru all the hell of beating HER2 only to have to go through it again. I don’t want to do this again.
I have the same fear but God is good.
So do I.
I was diagnosed at 40. Now I have a ct scan next week because the side they took out my lymph Thad been aching. God bless me.
I got HER3
@@syedapakeeza417 I have to research that. I never heard of it. Best of luck🍀
Brilliant videos that have been a great help.
At 67, recurrence doesn't keep me up at night. The impossibility of working with a cancer "care" corporation that won't return calls or schedule appointments or treatments does. It keeps me a nervous wreck. Cancer is routine to this corporation, and if some of us "fall through the cracks," who cares? This is one of many reasons I won't do hormone therapy. I would rather die than deal with corporatized medicine for 10 years.
My experience has been completely different. I have the most efficient and caring team on my side. They made all appts for me and made sure my care is expedited in a timely manner. Do you by any chance have Medicare Advantage Plan? I've been hearing not so good things about the "Advantage" plans making things difficult for patients. They sound good, until you need them. I have the original Medicare and supplemental plan and I'm glad of it. I hope you've gotten some help and answers by now.
I’m a cancer survivor really your great I finshed my treatment 8years ago and ididnt know these information until Isaw your video why the doctor didn’t tell me that .Is it their fault or my fault .Do Ihave to ask the doctor or he has to give the all information I need to know. ?
That's what I want to know. Why do doctors not tell their patients everything including recurrence.
@@marymarth7298 Depends on the doctors. Mine told me. Also, it's on you to do your research, educate yourself and ask questions. I go to every dr. appointment with a list of questions that I prepare in advance. Call your doctors and ask questions.
@@same5952in the UK that's pretty much impossible. We just get told "this is all I have" and they show an A4 paper with a handful of handwritten bullet points in short notes form.
I asked **Alot** of questions: got zero answers to the important stuff. I,m not allowed a copy of my pathology results unless I do a subject access request, provide my passport, and a signed form, and it may take up to 3 months to receive.
The doctor I spoke to didn't even know what ki-67 was, let alone if I was tested for it. He didn't know if my nodes had micro-metastases and/or CA cells found, just knew of the the one large node met.
He couldn't even access my pathology report on a computer in another office -- it wasn't available to him.
How can any of us research our condition when we're not being told anything; or worse being told wildly contradictory things.
I have lobular carcinoma as a young presey -- terrified of recurrence; and they they haven't got it all.... think my other breast has a lump, and during mastectomy, they only took 6 lymph nodes in what was meant to be a full ALND.
The peer review evidence is that anything under 20 nodes removed fails to give accurate nodal staging.
Plus, if I do still have a spot of lobular in the other breast, then chemo+radio is pointless, as it's been shown to not work as a neo-adjuvant therapy (and is hard to treat with adjuvant chemo too).
I can't get access to my path report, so don't even know if my ki-67 score was tested, nor the subtype of lobular, nor the levels of LCIS (if any, low/no LCIS being a worse prognostic indicator).
..... I feel powerless to self-advocate with oncology: as can't read the peer review literature about what's happened to my body..... and if it just gets treated like hormone positive ductal, this may concern zero benefits with huge harms done.
If my nodes haven't been accurately staged, as they only took out 6, how can I ensure the onco gives the correct amount of treatment?
Different doctors in the team are telling me different things: one told me this was aggressive, another told me this was super slow growing; one couldn't remember the TNM criteria, another said I was wrong when mine is stage 3A (8cm tumour, one macro-met in my exilla).... my tumour was verging on fungating in two places, and 2 in the team thought full skin sparing mastectomy would be fine, thankfully my surgeon said "no, if I put in spacer, you'll have a high chance of skin necrosis during chemo+radio.
Feel like I'm going crazy, and that the UK system of being opaque and dumbing everything down for patients, does more harm than good for those of us with some medical training: we're left tearing our hair out (pre chemo) as such conflicting information and it seems a lack of will to pass on the exactitudes of pathology results.
In 2008, I had a lumpectomy and removal of a few lymph nodes. The tumor was not E+ or HER+ had only a couple of P cells, that they told me was not enough to call it P+. The sentinel node was positive but the rest were negative. A week later they removed several lymph nodes from under my arm, which thankfully were all negative. Then it was breaky therapy followed by Chemo. 13 years later, my Mammogram discovered a lump in the opposite breast. The biopsy showed no invasive cells, however after the lump was removed and sent to pathology it showed invasive cells. When they retrieved some lymph nodes, luckily they were negative. However my Onco DX score was 30. I’m in Chemo once again and then will start radiation followed by five years of a hormone blocker. I’m 69 years old and I’m not on any other prescription meds. I am very worried that another reoccurrence may be in my bones or other organs. I’m hoping you may have some suggestions for lifestyle changes that could keep another reoccurrence from happening. Please advise, Sandy
I hope you’re doing well, sandy. ❤️
Natural herb from the earth should be your medicine such as seamoss papaya leaf have these in your diet that will killed cancer cells. 🌿
Hope you live for next 100 years
Thank you! I am doing well, just always concerned about a reoccurrence or other issues concerning all the treatments. But, I am doing well and looking forward to another beautiful Holiday Season! Wishing the same for anyone battling this disease or any other!
Do you often have stress or take soy supplements before and after the 2 cancer? My mom took natto kinase (a soy supplement) for treating high blood pressure for a year. then she got her2 positive breast cancer with er positive and pr positive.
and WHEN it comes back.....and treatment is pretty DARNED expensive.....
Yep that’s why/I won’t go thru it again, the oncology centers make a killing meanwhile I’m dead broke after.
@@factsoverfeelingspam2220 If you won't go through it again, you may/will end up more than "dead broke".
I’m currently having a reoccurrence I’m crushed!!!!
I know I feel like an almost ...everytime I'm posed to get everything I work so hard for this happens or my son who has late stage Duchenne muscular dystrophy gets something. I have almost so many times now ....I'm tired...and as usual ghosted by so many ...cancer is scary enough for person who has it...I get that it's scary...but don't avoid them ! That part always breaks my heart as I experience the same when my son is sick. As for so called relationships...lmao all abandon ship...so many times I don't even bother...it's almost easier to go it alone...tired of trying to make everyone else feel better about it. My kids ❤️ of course I want to be positive for them...but everyone else doesn't seem to get how hard it is to hold yourself together much less shore them up for something that's happening to me
Hang in there, Nisey! I hope you got some good news?
@@same5952 thanks doing oral chemo to shrink it for surgery but I don’t even want the surgery. It could possible spread further
@@niseylee7796 Hugs to you, Nisey! You make the best decision for yourself, but I'm thinking of you! Hugs to you girlfriend, and let us know how you're doing,
I’m a 12 year breast cancer survivor. I just had my annual mammogram and a spot was seen followed by an ultrasound. I have a biopsy in 6 days and I’m nervous. Same side so no radiation. I have a feeling I’m about to say goodbye to the girls! 💔
Decline death.
Hang in there. Live each day at a time. Enjoy ever sunrise as it comes.
@@gigit1111 Thank you! It’s back. Having a double mastectomy Friday and chemo after. It was caught early so a good prognosis!
@@nonyabiness4023 You will get through it. In 2014 had aggressive chemo, radiation and lumpectomy on tamoxifen still. I'm 57 and still here. Just be sure to TAKE the nausea meds while on chemo you don't need to be a superhero. Trust me take the pain med and drink lots of water. You'll be good 👍.
@@gigit1111 Thank you for the tips! Much appreciated! Congratulations on your victory!!! 🌸
I already went through chemotherapy, lumpectomy, lymphnodes surgery, radiation, right now I am on my 12th treatment of kadcyla, my concern is tumor markers showing 74 , doctor has been checking every three weeks and continues going up, already had petscan and was negative
Cadcya
If you have oestrogen positive, ask about an FES PET.
Also, do you have lobular? It doesn't form solid tumours, but rather strings, like cobwebs that wrap around and through structures. It's immensely hard to see.
Your case sounds concerning with the increasing tumour markers.
The lymph nodes gradually recognise cancer cells as being friendly, and therefore your body won't attack them: wondering if all your nodes were properly checked with the correct contrasts.
Also get in touch with the Oxford university metabolomics study researchers -- if they're on their next phase, they may be able to tell you if potentially you do have something growing somewhere, hidden away, just not where it's hidden.
I'm so sorry. Sounds like possibly something stray was missed, and that it's not shown up on the regular pet scan.
My mom just got diagnosed with this yesterday...
God gives your mom a long age
Same time with my mother:(( her2+
My mom passed away on December 2,2022 from this awful disease 😢
@@starieyes7390 :(( I am sorry . I don’t know it could be that fast. I hope you are ok now. I have been depressed for 3 months too. I pray every day and follow the treatment tightly with doctors but I don’t know much about future..
@@hotam138 when my mom was diagnosed with it she was in stage 4 and it had spread from head to toe...I will keep you in my prayers 🙏 ❤️
Sir I have positive breast cancer..will it Reoccur again. And can I eat Wheat
thank you
oh wow i commented 2 years ago lol ish look where iam now :(
mine came back 3 years after my mastectomy to my chest wall ,i had radiation and now next week i am having a suspicious lump biopsied
around the same spot.what does this mean for me ?????
That you will live next 100 years
How are you doing? ❤
And yet you guys hang the chemo bags giving patients false hope! Why? Huge profits! I was a hospice RN and was infuriated with what I saw for over 18 years!! You guys know EXACTLY what I am talking about!!
Hi Susie.
Thankyou for your comment...I needed to read something that I also noticed during chemo...they gave me 16 rounds weekly..first 4 x red devil and the rest paxitaxel...my report shows that i had a very slow growing cancer. I believe I was over treated and I know chemo does not recognise slow growing cells.
And they were bullying me for radiation.
I am now very paranoid with the whole thing.
@@stephp7778 I understand totally. In fact, when I refused chemo, I felt 2nd class! A bit mocked. I did do radiation. 27 Burns. I had 19 bad lymph nodes removed. Radiation was very difficult for me. I had the best plastic surgeon in Dallas. He was my advocate and being an RN, I have never experienced a physician like him. I am 4 years out. I hate to warn patients about the over use of chemo etc but I saw it all for 18 years. We have rights as patients and should always be investigating. We should be treated with respect even when we do not generate an average million dollars for the oncology centers.
@@susiepingleton3614 thx again...I wish you cure and many more years xx
I have tnbc with pregnancy 21 weeks taking chemotherapy how it is my baby
i had a breast cancer gone thru mastectomy but it metastasize in the bone...what is the chances?
Hello how r u now
Did your doctor do an Oncotype test or Mammaprint test after your initial mastectomy? That supposedly gives an idea about one’s chance of recurrence.
Thanks.x.
my mom was diagnosed with triple negative breast cancer 9 years back... MRM was done then along with 6 cycles chemo.. again she is diagnosed with breast cancer in other breast which is also triple negative.. MRM has been done.and now planned for chemo and radiation.. PET CT have been performed with no metastasis seen... but 22 axillary lymph nodes were removed all positive for cancer cells... so is there still a risk that cancer have metastasized!?
Thank you very much for all the knowlege it is very refreshing. In 2009 i was diagnose of stage 3 invasive ductal carcenoma estrogen + i undergo masectomy, chemo, radiation hormonal theraphy. Its been 10 yrs from my diagnosis. What lab should i underdo to determine recurence. I lost apetite and suffer back pains.
How is she .now
God gives your mother a long age
They want to pump the chemo! Huge money!
I have had no evidence of disease scans and ultrasounds done.At times I have pain in certain areas.I have read that the scans aren't accurate and sometimes there is a micro metastasis in places,that isn't seen by the test that are done.
In triple negative Brest cancer always mastacmy in every situation?
No, not mine. I also didn't carry the brca gene tho❤️
No, it depends on your choice in partnership with your surgeon. I had double mastectomy for TNBC because I’m BRCA1 positive. I also had an immediate reconstruction and to be honest, I’m very happy with the results of the surgery.
money
I don’t really want to hear anything about this🥲🥲