I was diagnosed with an aggressive TNBC in January when I found a 2cm stage 3 lump in my breast. Offered 12 weeks of Chemo ‘to melt the tumour away’ (pre op) but unfortunately the tumour did not get the memo and the Chemo failed spectacularly. The tumour grew to over 6cms when it was removed, along with 5 lymph nodes . Lumpectomy deemed safest as I have a number of health issues including a shonky immune system. Surgeon took a wide margin during the procedure, and with some joy and relief I am officially ‘cancer free’ atm. Biopsies showed growth/necrosis but not spread and LN were clear. I am about to start Radiotherapy but my Onc wants me to have Chemo again after Radiotherapy because the last round of Chemo I had was a change to AC “and it may have worked.” I had pain and tenderness like mastitis after the AC Chemo, and I am sure the tumour grew again. It may have been the Chemo interacting with the tumour but there is no way of knowing. I am as resistant to the idea of Adjuvant Chemo as my tumour was to the Neo Adjuvant Chemo. I have heard many BC stories, but not one where Chemo has failed and then what treatment choices come next Post Operatively? - was Chemo back on the table for anyone else? did you take it up? and did it keep you cancer free? My CNS suggested I post here and see if anyone can share their story as it feels like Chemo failure for TNBC is rare and I am alone against the experts . My point being the Chemo failed to work on the cancerous tumour we could all see , so how do we know if Chemo will interact at all with any potential cancerous cells that cannot be seen/monitored? Why go through the hellish side effects again and not even know if the Chemo has done its job? And lastly - when Chemo failed was there a reason or a theory put forward as to why? I am struggling with the not knowing and this is one of the reasons why I am so resistant to more Chemo.
I can’t help much, but just to let you know that I’m TNBC too and feeling for you x
My tumour was under 2cm so I wasn’t offered neoadjuvant, had wide excision and sentinel node biopsy, all of which were clear margins etc.
Then I had 6 cycles of chemotherapy, X3 EC and 3 Docetaxal. Some days I thought it was going to kill me, but I got through it and I’m now 5 weeks following the final cycle and soon to have 5 days of radiotherapy.
All I can tell you is that the aggressiveness of TNBC and the high recurrence rate in the first 5 years scares me to death and I decided I would have anything and everything I could to prevent it coming back.
Have you received pembrolizamab ??? Its supposed to be very effective. I’m in the UK and wasn’t eligible due to my tumour being too small !!!
Hi V - Thank you for your reply. The high recurrence is scary for sure , but I am more scared of going through another few months of hell with chemo too! I have had two rounds of Pembro so it is difficult to know if it had any impact at this point (surgery became urgent when the cancer started to present in my skin too and the Chemo plan had to be abandoned) . I have agreed to have it again after Radiotherapy. I have something called Ankylosing Spondylitis which means I have to medically suppress my immune system from attacking ( so probably/possibly an open door for TNBC!) and so the Onc was very cautious introducing Pembro and sought advice from a Rheumatologist before we went forward with it , and I will need to be closely monitored as AS comes with a wide ranging set of problems. It sounds like you are doing really well and thats wonderful to hear.
In 2021 I had 3 EC then 12 weekly carboplatin and paclitaxel chemo for tnbc prior to lumpectomy. Lymph were clear and clear margins, however live cancer cells were removed. The chemo never shrank the tumor as it was a cyst! Cancer was in the walls of the cyst. I then had radiotherapy. My oncologist consulted with others whether further chemo was the way to go. We decided not to as it had not removed all the live cells anyway. In Jan 2023 I had a mastectomy, no chemo for a local recurrence (tnbc) and have just been discharged.
I followed the advice of my oncologist. Every case is different. I wish you all the best
Hi Bibblebean. Your bc journey sounds complicated. It is interesting that your oncologist decided on the no chemo route. In hindsight do you think that was the right decision? Because you had a recurrence. As you said - the chemo didn’t destroy the cancer at the neo adjuvant stage and it sounds like the team had an understanding as to why that happened (the cyst) and that would have informed their decision. I think if I were in your place I would have gone for no chemo post surgery with that set of circumstance. My MDT think the one round of AC chemo I had may have caused some necrosis, but it feels like a very tentative suggestion, but enough for them to push for adjuvant chemo. I feel it’s pointless as it I’m sure even the AC failed pre surgery and the necrosis was from the tumour’s aggressive growth. I really appreciate you sharing your story and it’s wonderful news to know you have been discharged. All the best.
I think it was the right decision. The chemo I had was intense and didn’t kill all the cancer cells (scary thought😱). Once they were removed however (clear margins) there was no visible/known cancer left to treat, in effect, & the drugs didn’t work anyway, so I was happy not to have further chemo - who wouldn’t be, right?! … but all cases are different and the teams have experience. Hard decisions for all.