r/TNBC

When my wife and I first found out she had TNBC in July 2022, we scoured the internet for information. There were so many sad posts, and I talked to my therapist about it. They said something that sticks with me: “you have to consider all the people not posting good news because they are out enjoying their lives”

I promised myself I’d be the guy that shares good news in communities like this.

Diagnosed in July 2022 stage 2 with lymph node involvement- she then had chemo, DMX, non-PCR(barely), radiation, and a crapton of problems, here she is almost 4 years later with a clear PET scan.

The 5 years after a diagnosis is the hardest for TNBC, so we celebrate each year cancer free.

It CAN happen.

- Much love to all of you!

Today is the one year anniversary of my DMX!
It’s been quite the year, I wanted to mark it with people who will understand.
After surgery, pathology showed the invasion was TNBC. My other breast had LCIS and Hyperplasia. The surgeon staged me at 1 but also recommended chemo. 😞
After healing, I saw an oncologist. The treatment plan was ACT, I was terrified. I cried everyday. I managed to finish all infusions. I finished despite ER visits for palpitations, abnormal bloodwork requiring shots, neuropathic itch, and tinnitus.
I finished my reconstruction two weeks ago.
I’m. still. here. 💪🏽

23F for stage 1A tnbc diagnoses. Had clear margins at dmx on April 10th and today I completed my first round of adjuvant TC today!! 1 down 3 more to go woohoo🎉🎉❤️

Hi All - First I just want to say a huge FUCK CANCER. Okay great, now that I got that out of the way. I was diagnosed in Oct 2025, stage 2B. Did chemo, had my DMX a few weeks ago and unfortunately didn't get PCR. No positive nodes, clear margins, but I did have LVI.

When I met with my Oncologist and asked about my RCB score, he basically said it really wouldn't help determine next steps.

I have a consult with radiation on Friday and then Xeloda is for sure in the future. I'm also going to look into clinical trials in the Philly area.

I was just wondering if anyone else's Oncologist didn't provide a RCB score or feel it was necessary?

Okay I should NOT be spiraling downward right before my last chemo infusion but I am. For those of you who are past the initial treatment phase...

1. How are you checked for recurrence? I have dense tissue so mammograms don't show my cancer, so that makes me nervous.

2. For those of you who had recurrence how'd you find it and how bad was it? I keep hearing that if TNBC comes back, it comes back everywhere.

3. What was your recurrence treatment like? I feel like we are just all on keynote 522 after we get diagnosed but I have no idea what happens if you're declared cancer free, then declared not cancer free. And I haven't been been cancer free so maybe this is not the question to ask but it's where my mind is at today.

Most likely within the next month I will be starting treatment. I've heard a lot about having extreme fatigue and weakness and even weight gain with the steroids and chemo and medications.

I manage to get 10k to 13k steps a day and stay active with my toddler. I also just reached my goal weight! I'm so proud because it was a long and hard road to get to my goal. I've heard about weight gain with keytruda and it feels like a slap in the face with all of my hard work to get where I'm at.

For those who are active, how badly did treatment affect your ability to stay active? Should I expect to gain weight even if I do my best to eat healthy?

Hi everyone,

Has anyone here experienced bone recurrence? I’m 5 years post-surgery for TNBC, and my recent CT scan showed some suspicious findings in my ribs and back.

The report mentions new osteocondensing (sclerotic) bone lesions suspicious for metastases, located at the right sacroiliac joint (iliac side) and the lateral arch of the left 3rd rib. It also notes some pre-existing sclerotic lesions in the left 9th rib and the first ribs on both sides, which are considered indeterminate in my oncologic context.

I’m currently waiting for a PET-CT, but in the meantime I would really appreciate hearing your experiences. I did have a pretty bad fall about a month ago and injured those exact areas, so I’m wondering if it could be related.
Also, I recently gave birth and have an 11-month-old daughter, which makes this waiting period feel especially heavy.

Thank you so much in advance🙏🏻.

Hi! I am a 49 year old female being treated at Mayo Clinic in Jacksonville Florida. For context I had a clean mammogram just one year ago and then felt a lump right before my scheduled preventive mammogram in March and here we are! I have lymph node involvement (10) and I'm being treated with Keynote 522. So far I've had my first two treatments with limited side effects. I've had some nausea and definitely some exhaustion, some skin itching and redness but the steroids have helped tremendously in the first few days following treatment. I am also trying acupuncture today for the first time. My doctor is not recommending any medical marijuana which I have a prescription for here in Florida, which has been very disappointing. I understand there's just not enough research about the possible interactions with the Keytruda. My doctors have been amazing and have said they're treating this with curative intent and believe that I will have very very good results and become a survivor.

I'm looking to hear from others that have a similar diagnosis and your experiences. I'm very nervous for the red devil chemo which I will start after the first 12 weeks of the plan I'm on now. I have opted for a double mastectomy and I'm BRCA 1 positive. I don't know what that means yet other than I probably will do an elective hysterectomy. My doctors have said I will in all likelihood also have to do radiation.

I absolutely hate being in this club and I hate that you guys are in it too but I know it's been helpful for me to hear from others in a similar situation. I'm married and have a very supportive husband and I also have two boys that are 18 and 15. I can say with 100% certainty that the waiting to get the treatment plan and undergoing the Pet Scan which was terrifying was the worst part of this so far. I feel far better and more confident now that I have a plan in place and a great support team.

Love to all of you amazing ladies!

Hi. I’m 26, TNBC, Stage 2A. I’ve been asked by my MO to see a fertility doctor first to discuss egg freezing before I can start treatment but I’m wondering if it’s really worth the money to freeze my eggs?

It’s quite costly to freeze eggs in my country and I just feel like it’s not even worth it because it’s not even a sure guarantee that those eggs you freeze will get you to conceive. I also saw that for younger women like me that are diagnosed with BC, we have a higher chance of regaining our periods back after chemo and a higher chance of conceiving naturally after chemo as well compared to older patients. And I know it’s the same with egg freezing, that the younger you are, the higher the chance that those frozen eggs will help you conceive in the future.

But I’m just unsure. It’s a lot of additional costs. I do want to have a child in the future but is it bad to want to just wing it and hope that I’ll still be able to conceive naturally after treatment? I just know I would be disheartened if in the future I availed of the egg freezing then it doesn’t work in helping me conceive.

I know that for TNBC, egg freezing is more recommended because of the aggressive chemo regimen also. I’m just super conflicted. Would love to get some insights from those who chose to freeze their eggs and those who didnt and why you picked that choice.

I hesitated posting this because it sounds so trivial compared to what many of you are going through. But I’m curious - other survivors that were active before treatment, how long did it take to get back to your fit self? I finished treatment 9 months ago, stayed as active as I could during (strength trained with the Ladder app at least 3 days a week) but now I just don’t have the physical capacity to ramp back up. I’m dealing with fatigue and illness or injury every time I try to either add more strength days or include some cardio. Feeling like I’m physically fragile, but mentally I’m raring to go. Would love to know if this is typical? And if it is, when can I expect to be feeling more “normal”? Thanks all! ❤️💪🏻

Hi everyone. Today, I just got my treatment plan:

Paclitaxel + Carboplatin for 12 weeks with Pembro every 3 weeks
Epirubicin + Cyclophosphamide every 3 weeks x 4 cycles with Pembro every 3 weeks

1. Surgery
2. Immunotherapy

Chemo will be around 6 months long then I’ll do surgery then immunotherapy again after.

Honestly, my doctor was asking me if I had any questions to ask but I was honestly too overwhelmed with all the foreign words and all the information.

I’m also a little saddened because I can’t immediately start chemo yet, I still need to do my PET scan, 2D echo, egg freezing, and marking of my mass before chemo. I know they mean well but I’m just worried of my mass getting bigger. It already got bigger on my MRI results as well.

I guess I’d just like to hear how fast or slow you guys were able to start chemo after diagnosis and also your thoughts about my treatment plan and how I should prepare for this long journey ahead.

Just got my report and no pcr for me :( 0/5 nodes had cancer and I was node negative at diagnosis, margins were clear, and no DCIS or LVI so that’s good but not the complete response I was hoping for especially since my tumor shrunk so much so fast. Onto radiation and more chemo I go. Anyone else not get pcr? Years out from this?

Hi,

I just finished keynote 222 and then found out my cancer spread to the lymph nodes in my neck and my lungs, so now I am stage 4. My doctors are recommending trodelvy as the next step but wondering if there are any other trials looking into before I jump into that? I was pretty chemo-resistant through keynote 222, both to AC and TC, but I know ADC’s can be different. I’ve read about immunocine cancer center in Mexico, dentric cell therapy, and the mRNA vaccines. What would you do? Also I’m pdl-1 negative + brca negative. Thanks for your help

Here are some things I did recently:

1. I made every user flair editable. I don't know what to do with this stuff so hey we an all be creative. Stage didn't seem to fit. But I overthink things, especially right now, so now you can pick a user flair and make it literally whatever you want it to be.

2. Added new post flair for clinical trials, good news, caretaker questions. I like what the larger breastcancer sub does to with caretaker questions, they're allowed just have to use the right flair.

3. Took a nap. Because, chemo. It sucks but I'm thankful for this community and the support we have for each other. Hang in there and hope for the best 💜

Happy to hear any other suggestions or thoughts you have about our new and growing subreddit.

Happy Victoria Day!

Throwing this out here to see if this seems as suss as I think it does or am I just being an ass. Sorry in advance for a long ass post.

Dx earlier this year with Stage III Grade III 3x5ish cm tumour plus several angry lymph nodes.

Original plan: Keytruda, Lapelga (Neulasta), 4 rounds DC chemo followed by 4 rounds AC in 21 day cycles, then followed by mastectomy and complete dissection of nodes.

hahaha original plans hahaha.

Liver decides to be dramatic after my first round of chemo, but pretty much back to normal now (yay!). DC chemo has been rough AF with an unreasonable amount of weakness and fatigue, but my blood work looks great all considering (anything out of normal now is juuuust higher or lower than normal). I also had a complete existential crisis courtesy of the massive amounts of steroids and I think I made a mistake of letting them know about that.

Met with my surgeon last week and she asked “would you be okay with going into surgery tomorrow?” and I was like WUT?

Basically, my main oncologist is worried that I won’t tolerate the AC part of chemo because my side effects- the worst being my liver (back to normal now). She couldn’t explain the reasoning behind this because she’s “just a general surgeon”. On top of this, they downgraded the surgery to a lumpectomy and sentinel node(s) removal and using the dye to check for more involvement.

YES my original tumour SEEMS to be responding beautifully to the DC/keytruda- the original sites are no longer palpable, however now that the majority of the inflammation has gone down, I can now feel some palpable weirdness near the apex of my breast tissue below my collar bone and nearish to the armpit.

This area would be missed on a mammogram and they did not ultrasound it (though I did have a CT, but that was to check for distant mets in my liver- during which they completely missed a titanium clip near my diaphragm from my tubal ligation in 2014 which has been on walkabout in my abdomen for the last 8 years.

Here’s what is freaking me out a little bit:

The surgeon ADMITTED that she cannot discern between diseased flesh and healthy, non cancerous tissue by sight. The surgery would be based on the original markers they put in during the biopsies- neither of which are anywhere near this area of concern.

Aaaand they will NOT be doing any scans (not even ultrasound)- to gauge the physical response I’ve had. I get not wanting to do radiologic scans because: radiation. But an ultrasound to plot where the lumpectomy should be performed (or how large the lumpectomy should be) or to investigate this other area of concern…. I said- if you can’t see the difference, what happens when the pathology comes back that you needed bigger margins? Well, we’ll just go back in. Would additional scans help you plot your surgery? To which she replied “the data doesn’t support additional scans” (the data being everyone with breast cancer in general, not my specific case).

So, basically, let’s go in blindly where you had the tumour (fine) and the lymph nodes (cool) but ignore this other area (wtf). And let’s do this without completing your chemo. And we can just keep going back in and cutting (blindly apparently) until we think we’ve gotten it.

Here’s the thing: I am not a fucking idiot. I’m married to a doctor, I was a mortician- which involved just enough medical training to understand the broad strokes of things that kill you. I also know that ANY surgery carries risks: not the least being opportunistic infections when we’re already dealing with an immune system that has left the building.

Oh! And when I said I’d like a second opinion, they practically choked on their coffee like I was insane to ask for it.

It’s no wonder Nova Scotia has the literal WORST breast cancer survival rates in Canada.

Am I being crazy? Is it chemo brain that’s preventing me from seeing the logic of their plan? Have any of you with Stage !!! (typo stays) had your MOs skip AC and go straight to a vastly downgraded surgical plan? AITA?

I mean I know I’m completely nuts, but I’m nuts in the ‘hold my beer’ kind of way- NOT the I don’t trust medicine pass me the ivermectin kind of way.

Thank you I should’ve known that!!
I have been fighting TNBC for years. It started in 2004 when I was six months pregnant. I was in remission for 17 years before having it return with a vengeance! It has metastasized throughout my body including my bone, brain, kidney, lungs, and liver. The bone Mets are excruciatingly painful. I was recently hospitalized with nodules on my kidneys and a stent was placed to help the blockage to my ureter. I have lymphoma in my left arm due to lymph nodes being removed and have had a double mastectomy last year. I was wondering if it was common to have bloody urine after a week of clear with the new stent. It has been replaced once already due to a kink and don’t want it to happen again. I went on hospice two days ago and with the new pain can’t get any answers except to, “take more pain meds!” I understand this is what hospice does, but would like to know what is going on also. Any thoughts are welcome! Just not looking forward to a repeat process. I was also told I would have to have the stent removed, does this still happen on hospice? If anyone has any thoughts or similar situations, I would really like to know I’m not alone!!🥹

Hi I have completed red chemo and 12 weeks taxol. 3 weeks radiation. Dr just prescribed tamoxifen. I was Oestrogen 5%. Progesterone negative. Her2 negative. So treated like TNBC. I was premenipausal prior to diagnoses. 49yrs. I have a couple of questions to the group.

1. How many TNBC ladies are on tamoxifen? Is it common for TNBC's to be on tamoxifen?

2. I read in the leaflet it can change lining of uterus but it causing uterine cancer is rare. Is anyone else on tamoxifen worried about that aspect? I am a little worried as I had fibroids removed 9 years ago.in the uterus.

My mom (51F) was recently diagnosed with metastatic breast cancer. Her biopsy showed ER negative and HER2-low (1+). Doctors are treating it similar to aggressive TNBC behavior. PET scan showed spread to brain, lymph nodes, bones, lungs, liver and adrenal glands.

She completed whole brain radiation recently and actually improved a lot after it. Earlier she had vomiting, dizziness, speech issues and confusion, but now she is more stable and talking normally most of the time.

She just received her first chemotherapy cycle:
- Paclitaxel + Carboplatin
- WBC growth factor injection after chemo

Right now after first chemo she is experiencing:
- loss of appetite
- vomiting/nausea
- tiredness
- weakness
- occasional memory issues/brain fog
- emotional outbursts/anger some days (possibly from steroids/radiation stress)

But some days she becomes completely normal again and even forgets the angry episodes from previous day.

Doctors also suggested repeat biopsy and PD-L1 testing for further treatment planning.

I wanted to ask:

1. Did anyone see improvement after first few chemo cycles in similar HER2-low/TNBC metastatic cases?
2. How long did chemo side effects last after first cycle?
3. Did brain radiation-related emotional changes improve over time?
4. Any tips for appetite/nutrition during chemo?
5. Has anyone with HER2-low metastatic disease responded well long term?

Would really appreciate hearing experiences from patients/caregivers. This has been emotionally overwhelming for our family.