recurrent TNBC but stopped chemo

Sunworshipper

12 years ago I was diagnosed with DCIS, right breast, triple negative. No discussion about the triple negative part. 6 weeks of radiation. 6 years ago, I had a brain tumor that was sitting on my brain stem (mother died age 32 of it and her mother died age 51 of it). Surgeon felt it was a metastases from the breast, other physicians disagreed. One neurologist said he believed it was lymph that had changed composition from the high dosage of Decadron I had received. Now, 6 years later, grade 3 TNBC, right breast, 1.2 cm, no lymph node involvement (12 removed). Double mastectomy. One chemo treatment 3 weeks ago, then I stopped. Worse experience of my life. Do not plan to return to chemo.

luckypenny

Sunworshipper

I am very sorry to hear of your latest diagnosis.  Sounds like a very scary time.  Chemo is definitely not fun thats for sure.   I am sure you have talked to your oncologist about treatment options, ways to manage side effects and statistics etc.   I am sure it wasn't an easy decision.

Are there questions or concerns that you have too that prompted you to share your story?

 

wrenn

I too am triple neg and decided to stop chemo after first treatment after developing diverticulitis. I have IBS as well and decided to gamble with the cancer coming back for the sake of my intestines.

ellentk

I'm triple negative too. After two AC treatments, the second at a 20% reduction and given three weeks after the first rather than two as originally planned, I had to stop because of neutropenia. Even with Neulasta which I didn't respond to and many days of Neupogen which I eventually did, my WBC just wasn't high enough for it to be safe to continue. I'm very disappointed and discouraged by this. And am now dealing with tests to see why my WBC count fell so low so fast and recovered slowly. Some possibilities are as discouraging as cancer and not being able to be treated for it anymore. I'll know more in a few weeks about the causes of the neutropenia, maybe, as there is so much uncertainty in medicine. Learning whether or not my abbreviated treatment will succeed or fail is on a different kind of time frame. Luckily I'm not discouraged all the time. My WBC Is close to normal and most of my energy is back. And I have the ability to forget about this stuff for long stretches of time. I know I did all that I could do and if my body isn't strong enough for more treatment I just have to accept that. And maybe the treatment I had worked or maybe a lumpectomy got all of the smallish grade 1 tumor.

wrenn

my oncologist didn't seem to think it was a big deal that chemo was stopped. I think he wasn't convinced chemo would help anyway and the surgeon said it was a grey area.  Given that i am still having side effects from that one dose in november i am relieved to have stopped and think i can fight a recurrence better with my immune system not fighting chemo.