Triple negative breast cancer stage IV: Looking to connect

You had only oral chemo for TNBC?

No. I also had 8 rounds A/C, 12 Taxol, mastectomy, and 35 rounds radiation as well.

But the oral chemo and the immunotherapy were the Stage 4 treatments I received 👍

This is my 2nd reoccurrence of TNBC. My surgery is next week and have to wait to hear my treatment plan when the final pathology report comes in. So I don’t know yet…

I’m newly diagnosed and having surgery next week. Scared and anxious now.

@yakyak9 - hang in there, is surgery the first step in your treatment journey? What type of surgery are you having - I had bilateral and the only part of the surgery that I'm still challenged with - was my definition of "Flat" and the surgeon's definition. I'm not as flat as I would have liked. I was 68 at the time and I had no desire for more surgeries for reconstruction. I have prosthetics and when I was fitted, they asked when I planned to have reconstruction since they've fitted others who had closures similar to mine that were waiting for reconstruction. Hindsight I should have taken a picture to say this is what I'm looking for - can you do this or not. I did see a surgeon that specialized in breast cancer; but I think he might also have specialized in surgeries in prep for reconstruction.

Are you TNBC with any mutation markers and do you know your stage or what course of treatment is in store for you? I'm TNBC with BRCA 2+ and had chemo treatment as my first step to see how the lumps would respond before surgery. Fortunately I had great response; but since I'm TNBC & BRCA2+ it was determine bilateral would most likely be my next treatment since I have a mutation. Oddly I'm the first in my family to have BC. I was also very fortunate to tolerate chemo very well - lost my hair (I really cut it off when it got too matted as it was falling out); but that was about all. After my bilateral, since there was a small spot in pathology during surgery, I then had radiation - again I tolerated that well. In about 6 weeks I will hit my first anniversary of my "remission".

I suggested to my family members, including my children, to have genetic testing done because of the BRCA2+ mutation. My son has the mutation but my daughter does not. I'm not sure if my siblings ever had the testing done - but that is their decision.

Again - hang in there, this is a site for individuals going through or who have gone through this journey and we are a safe place to commiserate, vent and just ask questions. But know you are your own person and will navigate this journey with your own experiences. So try not to compare our experiences too much to your own.

HI Just wanted to reach out and say that I am feeling your constant worry and confusion as well.
I have LBC starting 12 yrs ago and have detected the recurrences of "small" tumor in 2019, 2022, in my left arm pit, even after I had Dmastec.2012, radiation in 2019 nd 2022. Now it was concluded that something they thought was benign is metastatic LBC to a vertebrae =11/20/23.
I have only taken Anastrozole for the past month. I am worrying about my first CT scan next wk and bone density test since the 11/30 biopsy results.
Sleep is so important and I have so many family & wk issues that have actually been going on for decades that I am really trying to weed through and keep my stress levels down, but I wake up and start worrying and wondering. I am TRYING to fit in mindful behavior, healthy regimens to compliment any medical treatment...cutting out processed foods , any for of sugar , minimize carbs, Oxygenating cells , lemon for Vit. C in my water..fresh .aloe topically and am going to try it in smoothies I make too. Aloe has the highest amount of oxygen in it of any plant. I hope this gives you some hope and comfort.

@yakyak9, thinking of you as you recover from surgery.

Just found out today I’m also TNBC. Had a lumpectomy with sentinel node removal. My Dr said this cancer is so extremely rare they are forming a team to investigate. Will be starting chemo in a month or so. Thank you so very much for all your information. I’m 80 and hope to survive the chemo. 🩷🦋

@yakyak9 - I'm TNBC & BRCA2+. When I was in my early 30's I was dx with "borderline ovarian cancer" (explained to me as pre-cancer). Instructed that if I wanted children I should start as soon as received clearance, because it was fast-growing and I should have a hysterectomy as soon as I had the size family I wanted. They said I should also be pregnant with #2 when #1 was 6 months old - I waited 2.5 years between children. When #2 was 6 months I had the complete hysterectomy. Then at age 68 found lump in left breast and underarm. When I think about it the previous 6 months, they were extremely stressful - my father was rapidly declining and I was taking over a lot of the responsibility of both my aging parents and working a full-time job. My father passed away at 95 at the end of July and early September I discovered the lumps. Since this was still during Covid and I was working from home I spent a lot of time researching first BC and treatments, then the search narrowed when it was dx as TNBC, then after finding I have the BRCA2+ gene I then added that to my search. I used as many reputable sites as I could to see what were the standard treatments and potential side effects and the impact to recurrence. I never looked at this as a "death sentence", so I never looked at survival numbers. Being BRCA2+ and TNBC the chances of recurrence on the other side were high so I opted for bilateral (flat/no reconstruction). I had chemo (great results in shrinking the lumps before surgery); then surgery; then "miniscule spot" found in pathology so recommended radiation - which I did. Now I'm on Lynparza (for the BRCA2+) gene - everything I've done SHOULD reduce my recurrence of BC to about 5%.

Nothing I've gone through has been unbearable. I was in pretty good health before, and am still pretty healthy. I was slightly nauseous and tired from chemo (easy fix - ginger and naps), also shaved my head when my curly hair got too matted; surgery was surgery, just took time to heal, I also researched things to do to make recovery easier; radiation was real easy (except the treatment cream stained a couple tops). Even taking the Lynparza has required minimal adjustments for side effects.

There is longevity with both parents - father deceased at 95 and my mother is 97 and still doing well. We are living in great times to reap the benefit of all the research that has been done. I remember when there was just "breast cancer" now they know all these variations exist and how to target the treatment to these variations.

Best of luck in any future treatments you may need, stay on top of all follow-ups and be sure to ask questions and ask them to explain so you understand. I also have a document that I keep updating with my journey - questions and doctor responses.