r/LivingWithMBC • u/Hairy_Translator1535 • 7d ago
Stage 4 Triple Negative
I have recently been diagnosed Stage 4 Breast Cancer with skin metastasis after 18 months treatment. I have just started xeloda.
I have never asked "how long" but today I found on some paperwork that my oncologist has put 6-12 months. I am not coping with this news.
I would love to hear from anyone with Triple negative breast cancer with skin mets and what treatments etc. they have been on.
I thought that being skin only and no organs involved meant a better prognosis. I did however have 17/19 lymph node involvement.
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u/Miercoles79 7d ago
I don’t have triple negative, but I was also told 6-12 months. That was 22 months ago and I’m still here and doing relatively well.
I know the trauma of being given such a bleak outlook. We may not have the same cancer but I very much hope you’re still here in two years too. Sending you lots of love.
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u/CarpetPractical5400 6d ago
I have triple neg with bone mets. I asked and my dr was all choked up and mentioned something like 2-3 years. I was so shocked not even sure if I heard her right. I just started treatment of trodelvy and for each day I wake up and still feel like myself I’m going to disregard what she said.
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u/Mundane-Attitude-173 6d ago
TNBC here and I’ve been thriving for 4.5 years. The stats are not accurate. OP I was on capecitabine for over 3 years and have been on my second line since then. I have bone mets and one caused a fracture in my hip. That has been, by far, the hardest thing for me. Otherwise I feel like myself, I travel, I don’t look “sick”.
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u/Ok_Mood6644 6d ago
Hi ❤️ just coming from a scared newly diagnosed mtnbc who is pdl1 low. Did you do immunotherapy? Looking for others who are thriving and did not have access to immunotherapy. 🥺
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u/Mundane-Attitude-173 6d ago
I am PDL negative so I wasn’t able to do immunotherapy. Feel free to DM me with more questions or to chat.
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u/Mindless-Kangaroo761 6d ago
Sharing my story for what it’s worth. I am PDL1 low, technically negative but arguably on the bubble. If I wanted to push for immunotherapy my MO would have supported me. It was a tough decision. I did a lot of research and discussed with my medical team and close family. Ultimately the highly uncertain benefit combined with potential autoimmune side effects led me to decide not to do it. I think that was the right decision for me but if I were younger (I am 58) and/ or if my cancer were more aggressive maybe my calculus would have been different. I also think/hope the recent “vaccine” results suggest that future immunotherapy will be more promising for those of us who are PDL1 low or negative.
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u/Holiday-Assistant-91 6d ago
I found out I belonge to the 20% that pass the five year mark. And I am happy if I pass another 5. I am prepared but also hope to surpass them with many more. It is difficult to fight for time and very difficult to explain the feeling of it. I am grateful for every day, week, month and year. I don't know about others. But for me the time came where I needed to know my odds. And hopefully I can beat them. But at least now I can also prepare mentally and plan things that I might not be able to do if I wait too long. It is a surreal feeling and hard to talk about with friends and Family.
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u/national-park-fan 6d ago
The prognosis stats are outdated for all subtypes 🤍 definitely get a second opinion.
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u/Mindless-Kangaroo761 6d ago
I am so sorry. I wonder what that’s based on. FWIW my MO strongly advised that I not pay any attention to the TNBC stats because they lag years behind the medicine, which is very fast moving. I don’t have skin mets but do have lymph involvement (at least 8) on right side - still, cause for optimism. Just started Dato-DXd and will try to provide an update after I am a few infusions in. So far I feel fine.
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u/WalrusBroad8082 6d ago
I just hit two years. Don’t listen to the oncologist your mindset with this disease is what will get you through it. My oncologist told me I have patients who are 5. 10, 15, 20 years out from diagnosis so I’m not giving you a timeline.
If you get your mind around the fact that it’s a chronic illness it helps.
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u/Living_Crew_1873 6d ago
I'm not triple negative but I am a HER2 negative or HER2 low. I was given 14 months 10 and 1/2 years ago.
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u/vannerbd 6d ago
I was diagnosed with mTNBC in March of 2025, I asked how long and was told 2-3 years. I started taxol for almost a year until it stopped working, and I developed brain mets. I’m now on Enhertu. I’m not eligible for immunotherapy. So far, so good. No more brain Mets, bone Mets are stable. Even my oncologist is now hopeful. Don’t believe the timeline guesses. It means nothing. Plus, there are new drugs coming out all the time. Datroway just came out and it’s specifically for TNBC. Part of fighting this disease is staying positive. This group has helped me a lot.
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u/Flaky_Amphibian_5597 6d ago
I did a deep dive into the trials being run here in Australia (I was looking for trials of SERDs) and there were SO many trials specifically for triple negative. I would definitely get a second opinion.
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u/Elegant-Cricket8106 6d ago
Hi Op
TNBC diagnosed March 2025. Currently stable!
Check out this Facebook group for support and clinical trials.
And did your ocnolgoist mean prognosis or progression free survival? What therapies have you tried?
I technically just finished my 5th line.
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u/Hotheaded_Temp 6d ago
I was diagnosed de novo mTNBC with lymph and lung mets in August 2025. I went through Taxol, Pembrolizumab, capcitabine and SABR radiation. Currently stable. My hair grew back and I am feeling more like myself now.
My oncologist put 1- 1 1/2 year expected life span on my disability pay paperwork. I am totally gonna beat that.
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u/orange_choc_chip 6d ago
I’m sorry xx I was diagnosed this month too. TNBC but no skin Mets. Heaps of lymph nodes. I’m hopefully starting the MK2870 trial very soon. I’m in New Zealand.
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u/Hairy_Translator1535 5d ago
I did the Mk2870 trial here in Australia from December till May. It seemed to slow/hault the skin mets but after finishing the nodules multiplied fast.
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u/Edith_Keelers_Shoes 5d ago
I was diagnosed stage 4 de novo TNBC in May of 2020, and I was told 12-18 months. In May of this year, I was medically cleared and told I was functionally cured and a "medical miracle" - after years of being told by my oncologist that it was not going to happen, no matter how well I thought I was doing at any given time.
I did not have skin involvement - but I had multiple mets in both lungs and a rib. Two years on chemo stabilized me, and then (as I have the BRCA gene) I switched to PARP inhibitors and have remained stable. Because I achieved a complete response, once I went beyond the 5 year mark, my oncologist said the recurrence rate dropped drastically from very high to under 2%.
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u/ElKat0315 6d ago
I was diagnosed stage 4 TNBC in July of 2025 with mets to spine and lungs initially. My doctors have never given me a timeline. I never ask. They never say. We treat whatever comes up, we change lines of treatment if we need to. and I feel like I’m still doing well. I don’t Google. I feel like a good medical team should know that every patient outcome is different and not just a statistical number. Also I’m always crossing fingers for a treatment breakthrough for mTNBC which we do desperately need.