Are there any positive stories from ladies that had residual left after all chemo and surgery? Really struggling today…..
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Hey Mrsbb,
I had pre surgery chemo for TNBC in 2024. I pushed my surgeon for a full mastectomy.. I didn’t want a lumpectomy .
After the surgery , I was informed that the cancer was not completely killed by the chemo .
This was disappointing, but I did know that this is the same for many women . A full response is not guaranteed
After my surgery , it was decided that I didn’t need radiotherapy ….. mainly because I had a full mastectomy.
I was prescribed a 6 month course of an oral chemo called capecetabine . It was manageable … the main side effects that my feet were very sensitive and blistered a lot . I also continued with immunotherapy… but that was always the plan regardless of chemo response.
The chemo tablets were ok .. I worked throughout , my hair grew , no issues with bloods etc
I hope this helps … but obviously everyone is different and your oncologist might prescribe something different
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Thank you for responding! Can I ask if you had both Cape and immunotherapy on the nhs? Are you doing well now after treatment?
Yes I did .. but I think they test the tumour type to assertion if the immunotherapy / chemo will be effective before it is prescribed . Every case is different
I am really well at the moment .. I am having bisphosphantes for the next 18 months as a risk reduction for bone cancer .
I feel that I have recovered from the initial chemo and surgery and feeling stronger every day. My hair is growing back and my energy / fitness is back to pre cancer levels
I’ll be monitored by scans for the next few years and obviously this is scary… so I would say that I do have some mental health wobbles … but I am really trying to flip this to be a positive thing …. I am choosing to see this as a blessing that if I am unlucky and have reoccurrence , then at least it will be discovered quickly and treated/ managed . I am also encouraged that there are so many new treatments now available if I need them .
So just to get this clear in my head, you had both cape and immunotherapy on the nhs? How much residual did you have if you don’t mind me asking? My tumour is being retested for beta and proteins to see which treatment is best. I desperately want both but have been told I can only have 1 on the nhs! I even offered to pay for cape but don’t seem to be getting anywhere! Which part of the uk are you? X
There are nice guidelines regarding incomplete response to chemo in Tnbc …it might be helpful to apply your individual situation to those guidelines and then speak to your doctor … that’s what I did .
There is a really useful flowchart that you follow to understand the treatment regimes..
Although … One thing I have learned on this journey … everyone’s situation is different .. type / stage / grade etc …
In my case .. I think around 70% of the tumour was killed … around 30% left