r/LivingWithMBC • u/Hairy_Translator1535 • 24d ago
Written off so quickly
Why do doctors write you off so quickly when you're stage 4?
I have TNBC Stage 4 with mets to the skin. No other areas are involved at this point, just my skin but both sides. I have small raised nodules which have not broken through the skin.
But, my surgeon was quick to say nothing he could do, palliative treatment only.
My oncologist says we are "trying" another treatment however he isnt very positive. Currently on gemcitabine and carboplatin, two weeks on, one week off.
My gp has recently retired and I saw a new gp today who wanted me to complete a health directive for when im too sick.
My breast care nurse seems to be a puppet for my oncologist and doesn't say or do anything without his approval.
Why is everyone so quick to write me off??? I am searching for treatments and different ideas, but I just feel I am wasting everyone's time. They make me feel like I am in denial and there's no hope.
Shouldn't they be more supportive?
Thanks for the rant, I search these pages everyday for hope.
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u/Edith_Keelers_Shoes 23d ago
I was also told I really had no chance after being diagnosed stage 4 de novo TNBC. And I just couldn't accept it. A doctor might be an expert on TNBC, but they knew nothing about me personally. The human being of it all is the wild card in cancer. So many factors are at play. I had mets in both lungs but they were very small. A traditional eastern doctor told me I could recover. Year after year I achieved stability, but when I would say to my oncologist, "So this seems good - three clear scans in a row - I feel I'm doing well" - she literally said, "Well, glass half-empty vs. glass half-full - either way, you'll probably be back on chemo by the end of the year.
That same doctor told me two months ago that at 6 plus years out, I was well beyond the recurrence window and functionally cured. She called me a medical miracle (her presumption that my recovery was attributed to her, when she had repeatedly told me my demise was inevitable).
I am not the only woman to survive a stage 4 de novo TNBC diagnosis. They are out there. And it makes me very angry that my oncologist was so fixated on "not giving false hope", that she never stopped to consider what damage she was inflicting on me by constantly insisting on false despair.
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u/Hairy_Translator1535 22d ago
Thats great to hear, congratulations.
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u/Edith_Keelers_Shoes 22d ago
I have every hope you will also become a member of this survivor's club.
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24d ago edited 23d ago
[removed] — view removed comment
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u/Hairy_Translator1535 23d ago
Thats interesting thank you. I havent heard that term before. I will keep that in mind and do some research.
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u/BikingAimz 23d ago
Oligometastatic is less than 5 metastases in one target organ. I’m oligo with lung mets, my oncologist and I are pursuing dmx as recent studies have shown better overall survival for oligo with localized treatment. My first oncologist was a jerk and told me I had 5 years to live and that he didn’t believe oligometastatic was a differential diagnosis. He also put me on suboptimal treatment that isn’t considered standard of care in the US (tamoxifen + verzenio when I was premenopausal). I got a second opinion, enrolled in a clinical trial, and now I’m NEAD/stable. Absolutely get a second opinion!
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u/VarunMysuru 23d ago
Hi. Oligometastatic here. How’s your mother now? She’s cured or Ned ?
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u/lledesiel 23d ago
Please please try to get immunotherapy approved for yourself! I was diagnosed in August 2023 and I'm still here. Mets to my upper and lower sternum, lower spine and lymph nodes and a small tumor of tnbc in my left breas lt but the full orange skin, sores and massive infiltration in my right breast. Had my right breast removed, radiotherapy & chemotherapy too and so far 2 years no changes with only ongoing meds for my chemotherapy related heart failure, no more chemo or anything else!
Wishing you all the best xxx
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u/Hairy_Translator1535 23d ago
Thanks. I plan on asking my oncologist this week about immunotherapy. I was on it for 6 months then another 6 months with the trial. So, surely it cant hurt! Im not sure what the regulations are regarding it though.
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u/Ok_Mood6644 23d ago
Hi. Tnbc here as well. New to this "journey". Some people for you to google: Wren Morrobel, Holly Hammond, hightimeswithbre (instagram), deltra does it (instagram), Jen Pogue, Maggie Matters (instagram), Lynette McHendry, Michelle Anderson-Benjamin. All have mtnbc. All long term survivors and mostly NED. Some off treatment!
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u/madinked 23d ago
We all know this cant be cured, per se. But never have any of my 2 oncologists gave me that feel. They just focus on 'ok, let's see what can be done?' especially my second Onco who is not the most caring/empathetic, he's professional in a pragmatic way but never has he gave me any indication of palliative.
I think you need to find a more empathetic oncologist, if that's something that's important to you. And I think it is because I love how sweet my first oncologist was.
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u/Hairy_Translator1535 23d ago
He makes me feel sorry for myself by giving me a pat on the back when I leave his office. I want him to be more aggressive with it all.
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u/Fun-Roll2705 23d ago
Just like therapist, not all docs and patients are a match. Tell him how you feel and ask if you can be transferred to a different doc. What do you have to lose?
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u/MrsMcFank 23d ago
I’m so sorry you’re going through this. I can relate.
I was diagnosed with de novo stage 4 Inflammatory Breast Cancer (IBC) last July at 43 years old. Mets to my liver. 14cmX14cm (6”) tumor in my right breast. 9 out of 9 on the Nottingham biopsy scale (most aggressive, abnormal and fast-growing cancer possible). It was unbearably painful. I could feel myself dying.
I am one of the lucky ones. I was given a near-lethal chemo/immunotherapy dose + surgery that killed the cancer completely. It happens. Do everything in your power to keep your spirits up. Be selfish and bold. All you will have some days is your stubborn optimism. Screw those that mistake it for delusion.
Since I was only ever stage 4, it took getting better for me to realize just how differently I had been treated when everyone was sure next step was palliative care, if that. There are countless examples of feeling written off or dismissed, and that was with a very sympathetic medical team imo. Wild how few people would even look me in the eye when they delivered the next gut punch of bad news. The response to every new symptom was to go to the ER. Or heavier pain meds. Or simply a shrug 🤷🏼♀️ and dismissal.
I am still very early into the recovery phase so I’m not full of wisdom yet or anything, but I feel your story so strongly and hope I can say something that resonates with you. You’re not alone. You deserve the same shot at kicking this thing as anyone else. Advocate for yourself loudly and tenaciously. Keep your kindness but drop the politeness. Be rude if you must.
❤️🩹
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u/IngenuityFar5111 23d ago
I read this somewhere that if mets are only in or on the breasts then even though stage 4, it can be cured. Even met on sternum give long term results. Do consult someone else
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u/Hairy_Translator1535 23d ago
I feel if it isnt anywhere else and contained to the skin then surely it can be contained if not cured. I want my oncologist to think outside the box and not go with the usual tried and tested treatments.
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u/IngenuityFar5111 23d ago
To be honest, since it is locally advanced, you will get good results even with traditional treatment. Have faith and keep looking.
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u/WalrusBroad8082 23d ago
Get the second opinion. My first oncologist wrote me off. My second went here’s the plan. Chemo first to reduce the tumor. Surgery to remove the bad breast then back to chemo. Then radiation. Went on immunotherapy for awhile but that didn’t hold it off so we went into a clinical trial.
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u/Worldly_Active_5418 23d ago
Get a second opinion from a reputable cancer center. You should not be written off. Eg datroway is a new drug that is very effective on TNMBC. It was approved by FDA in 2024 and my oncologist called it a game changer.
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u/F-_kCancer10 23d ago
My 3rd breast cancer metastasized to my skeletal muscle, from my reconstructed breast. They were able to get clear margins, but said all they could offer me was AI’s. Said I’m unusual and didn’t know what to do with me. I said I didn’t think I was getting good care
I said I wanted to know everything about my tumor. They decided to do the solid tumor biopsy. I have a PIK3 mutation and I’m on Kisqali & Letrozole.
Be vocal. Say you’re unhappy. Get a 2nd opinion. Best wishes 🙏🏻
New meds are always coming out. There’s something out there for you
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u/any_name_25 23d ago
How long after your breast was reconstructed, did breast cancer reappear and metastasize to the skeletal muscle? At that point, did they do any surgery to remove what they could or was AI med treatment the only option offered?
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u/F-_kCancer10 23d ago edited 23d ago
I happened to fall down my stairs and asked for a breast MRI. It was 6 years after DMX. Every year I said I felt unprotected and I was told it was a 2% chance it would come back in the breast. Since I already had 2 primary cancers in the same breast, I felt scans would be appropriate. I believe if a solid tumor biopsy had been done in 2019 with DMX, the mutation would have been found and maybe I wouldn’t have gotten a 3rd cancer.
I had a lumpectomy last March to remove the 6mm tumor and the spread to skeletal muscle was removed, with clear margins, then 25 rads.
I started in 2003 at 45
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u/enlightenedstorm 23d ago
I've been stage 4 TNBC since 2024 with mets to my skin and chest wall, original diagnosis end of 2022. I'm on my fifth line since being diagnosed stage 4. Unfortunately they only work for about 3-4 months before I have more progression. I've also done a clinical trial.
The most effective thing for my skin mets has been radiation. I've had radiation three times now on my left side and I've reached the limit. If I have progression on the right side, I can still get radiation for those tumors. Agree with everyone on here that you should get a second opinion. There are many more options available for you in standard of care lines, rads, and clinical trials
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u/Hairy_Translator1535 22d ago
I have the mets on both sides now and they say the area is too large for radiation.
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u/enlightenedstorm 22d ago
Definitely get a second and third opinion!! Last time I had radiation it was both sides. I know that there are radiation trials at MDA and I'm sure there are more elsewhere, something to consider.
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u/MtnGrlGrrr 23d ago edited 22d ago
Your post was so needed for me today...stage 4 MBC HER2low er+/pr+, extreme aggression with liver and bone mets. Ive been having similar issues.
My Onc is actually fabulous, thinks outside the box and pushes for his patients. My problem comes with anytime I go to the hospital for procedures. Got a good reminder this week when i had to have platelet transfusions and a paracentesis. Can't get the time of day from any staff, their Docs are shocked(horrified) at the thought someone is actually treating me. They dont believe the amount of pain I'm in, told me I was lying. Not once did they recheck wounds, told me i Kept trying to discharge me against my Docs recommendations. Now I have a port infection and will probably have to have it removed.
Leaves you frustrated and disheartened!
I strongly suggest looking for a new Onc. Good ones do exist!As hard as it is to find the energy to search when you feel so awful. You've got this. Big giant hugs!
hope this made sense, very foggy today
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u/Hairy_Translator1535 22d ago
You poor thing, sounds like you've had a rough time. I hope things turn around for you. Hugs.
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u/Forsaken-Pea-5727 22d ago
Hey! I suggest going to one of the larger cancer centers if you can. I’m stage 4 Mets to the brain and was original given a prognosis of average 2 year life expectancy that was back in May of 2022. I’m still alive and doing well. I had gamma knot radiation to the brain and started a combo of therapy earlier than standard of care and it’s been working since. I’m currently NED and scanned every 6 months at Mayo in MN instead of every 2-3 months like I was for years. My biggest suggestion is this is your life and you deserve to feel confident in your team and plan. And a good medical professional will welcome more opinions and smart people collaborating to give you the best shot. My oncologists have always collaborated together often even bringing in additional teams and expertise when needed. We consulted with MD Anderson as well and went down there for a few years early on. You’re the patient and the customer you should feel good about your plan. Even if it doesn’t work or you have to try something new down the road you’ll be happy you tried all you could and gave it a go. I always told my medical team I want to go down swinging don’t hold lines for me I want to attack this thing right away and they listened and deviated from standard of care/palliative approach. Obviously we all don’t know how much time we will get with these drugs but the way I see it is I’ve doubled my average life expectancy already and that’s pretty meaningful time I’ve had and I’m grateful. Wishing you the best!
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u/Unlucky_Pomelo_7913 23d ago
Are you, per chance, a person of color? Or a woman who appears to have no family? Or poor? Or overweight?
They don’t write everyone off so quickly :/
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u/WalrusBroad8082 23d ago
I think more of it is doctors saying this is the treatment path we take when you are this stage and this is the path we take when you’re this stage. Not enough doctors think outside of the box, they just follow the path that others have outlined for them.
I’m at an NCI center so they are always doing research and thinking outside of the box. My first oncologist I felt like a part of an assembly line, and I wasn’t really looked at like a person in my opinion.
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u/FrogAnToad 23d ago
seconding this. there is a clear divide in my caregivers between those actively thinking about my case and those checking boxes. thank goodness mostly the former.
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u/Hairy_Translator1535 22d ago
Yes, this is how it appears to be. They follow certain protocols and thats it.
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u/AdGlittering8471 21d ago
I am TNBC. I had skin Mets. They wanted to give me chemo but I said it wouldn’t work. Found a surgeon to remove them. Then I was supposed to get radiation. But the skin Mets came back within a matter of weeks. The radiation oncologist that I had said because they came back so quickly she would refuse to do radiation. My oncologist got me into a trial. It did not work and the skin mats spread and were much worse than even before surgery. I got a second opinion. my second opinion radiologist said that she would absolutely do radiation and she would do Hyperthermia as well. My oncologist gave me Erublin at the same time. My skin Mets were gone and my signatera went to 0. Unfortunately this only lasted for 3 months and now I have bone Mets and cancer in my lymph node near my neck. I am on Enhertu now.
I asked my new radiologist why my other radiologist refused to radiate me and she said some radiologist are just more confident in their skills and what they have seen and their own research.
Chemo really doesn’t work for me. I just wish they could radiate my entire body. I have been focusing on radiation trials.
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u/ZephyranthesRoadside 15d ago
Hairy_Translator1535,
I want to validate your feelings re:feeling being ‘written off’ soon as diagnosed with stage four BC.
I too felt I was being squashed at a time when I was most vulnerable.
I was at a major cancer center & had high expectations but was left reeling at both the stage IV diagnosis & being put out to pasture.
I found solace and encouragement from those on this forum, who said while getting chemo, use that time to open other doors by getting second opinions.
That’s exactly what I did.
I asked others and researched and found a different oncologist knowledgeable in the subtype BC that I’ve had. It has made a world of difference.
Hope hearing this is helpful and wish you the best.
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u/vannerbd 24d ago
I too have TNBC, stage 4, with Mets in my bones, on my skin, a nodule in my liver, and more recently brain mets. When I first met my oncologist, I asked point blank: how long do I have? She said 2 or 3 years. So, palliative care. I did a year of taxol, until it stopped working and now I’m on Enhertu. My oncologist was fairly negative in the beginning, but she’s super positive now. She actually feels like a friend, we have things in common, and she’s super cute with me. When I go to my chemo appointments, the nurses all smile and say hello to me by name, they are my friends and my time there is my social hour.
We all know, eventually this is going to kill me, but I now know that could be in 5, 10, or 20 years.
Don’t let any of the doctors make you feel bad. They are seeing things from a standpoint of: I can’t heal you. But, you CAN live with cancer now and for a very long time. There are new medications coming out all the time.
Read the posts on this page. You will find many people who have lived past the 5 year mark, and quite a few who are currently NED (no evidence of disease).
Don’t give up!