Treatment decisions-Triple negative

I'm starting capecitabine today, so glad you got through it with without any terrible side effects. I had a horrible time during adjuvant chemo and had to stop taxol treatment early so I'm having capecitabine tablets just to make sure they get all the cancer. I also had a lumpectomy with radiation but if I need to have a mastectomy down the track I will have one. I've already decided that I'm definitely going down that route if I have to. 

Thanks Kelly for your response and sending through the link to the study. It certainly reads a more positive result than I was lead to believe and I will now follow it up with my oncologist. There is always an unknown regarding residual cancer. I was told the chance of my cancer returning was 30 to 40% as it was locally advanced. To me I have greater odds of it not returning then it returning. 

I had had a breast screen 4 months before I found my lump so either the cancer developed and grew after the screen or the screening didn’t pick it up. 

I think this is the study. https://www.nejm.org/doi/full/10.1056/NEJMoa1612645 
The significant part according to my oncologist was "residual cancer cells after treatment" - my triple negative tumour was resistant to something in the chemo mix I was given but oncology couldn't pin down exactly what. The key data for me in deciding was "rate of disease free survival was higher in the capecitabine group (82%)" and also "74% were alive and free from cancer at  5 years",  a 10% and 5% improvement compared to the control group who didn't receive capecitabine. 

I hate looking at statistics, who can say what part of the group I'll fall into? the 82% who do great or the 18% who get a recurrence despite all they do? I was incredibly lucky to find my cancer, although I certainly didn't feel lucky at the time. I had no symptoms and it was a totally random decision to get a breast screen - I had one at 50, I was going to turn 54 and thought I should just check because its free, so why not?  A small triple negative cancer was found, in my surgeons opinion no more than three months old but already stage III. 

I have young kids as we were only able to start a family with the help of IVF and I want to be around with them for as long as possible. So while my Dr tells me my odds of getting another triple negative breast cancer are the same as for someone who hasn't had one, the thought of going through another two year stint of chemo and operations frightens me. I don't have the gene but no one can say why I got this or that it won't come back and this time I or the scan miss it.  I am hoping that if my luck turns and despite all tests to the contrary some cancerous cells migrated through my lymph system that the additional capecitabine has dealt with those. The mastectomy is for peace of mind (I think). 

Hi Kelly
I found your feedback on Capecitabine very interesting.  My oncologist said to me that the research was not conducted on people with TNB so I would be really interested in reading the research that says otherwise. Are you able to get hold of the research details?
 I was stage 3 with the spread of cancer in nearly half my lymph nodes so I am definitely in the target study group. 

Hello ladies. I thought I would just quickly post about my experience with Capecitabine/Zeloda. Oct 2019 I was diagnosed with small triple negative tumour in right breast, hadn't spread to nodes. I had chemo followed by lumpectomy followed by radiation instead of the mastectomy I wanted thanks to COVID in 2020, as Drs wanted to keep me out of hospital. In October 2020 my oncologist asked if I would be interested in taking 8 cycles of Capecitabine as there was a recent study indicating very good results with reducing the recurrence of triple negative breast cancer over a 5 year period.  The study, though, only included triple negative stage 3 that had spread to lymph nodes or beyond. So it wasn't definitive that the Capecitabine would do anything. My tumour was *mostly* dead after first lot of chemo but considered resistant. I'm just finishing up the Capecitabine tablets now, June and haven't had any terrible side effects or long term effects as far as can be seen. I have some liver damage from the first lot of chemo. I decided after some back and forth to take the Capecitabine as it might do some good with any cancerous cells that had not been dealt with by chemo and radiation and so long as it didn't seem to be doing any harm or causing harsh side effects. I didn't experience any nausea, there has been some fatigue, particularly getting to the end of the 8 cycles. If anyone with triple negative breast cancer who went on to mastectomy would like to comment or direct me to your post, that would be appreciated as that's the next thing I'm trying to decide. My surgeon considers its "probably" not necessary, more a peace of mind situation. 

Hi Jen
I am really sorry to hear about your new bout of cancer. Sounds nasty too. I can understand you wanting to find out all you can. You didn’t mention how they plan to treat your cancer?

 I started on the Zeloda but decided that 6 months was a long time to be on the drugs for an effect that was unknown. So I stopped it after 5 days. 

Hi feathers,
how did you go with Zeloda? 
I had TNBC in 2013 and had 16 rounds chemo & 20 rads after lumpectomy.  I have just been diagnosed with TNBC & IPLC & DCIS in opposite breast 3 weeks ago and would love to know about any new treatments out there.
thx
jen

 I have decided to go ahead with the Zeloda, I start tomorrow. 

Thanks @iserbrown so great to hear people’s positive stories. 

Awesome find, @iserbrown - that was the most uplifting post!! xx