Hello. I need some positivity or reassurance from anyone who’s been in similar.
I had TNBC in 2022, full pathological response after chemo, lumpectomy and radiotherapy.
it’s now back and very aggressive. It’s in lymph nodes in my arm pit and my under breast bone, and up to collar bone. There’s one lymph node near my collar bone / neck where surgery isn’t an option so I have to rely on chemo and immunotherapy, if that doesn’t work I’m not curable. I also havd suspicious activity in my other arm pit.
I’m so panicked and struggling to eat or sleep. If I was told it’s curable I can just crack on with treatment (no start date yet) but I can’t cope with the limbo and I’m spiraling.
I have a very supportive family, but they can’t give me real reassurance
3 Likes
Hi @florencesnowball.
I am sorry you haven’t had a response yet and to hear what you’re going through, it is not a surprise that you feel afraid of the unknown.
I am sure someone will be able to share their experience with you and positive thoughts soon. In the meantime please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000. Sometimes it helps to just have a chat.
Sending our love,
Chloe
1 Like
Hi Florence
I hope my story can give you a bit of reassurance. Like you I was diagnosed with TNBC in 2022 and underwent surgery, chemo and radiotherapy. During chemotherapy I developed infected diverticulitis and ended up as an emergency admission to the oncology wards. From there I had a CT scan “just in case”. It transpired I had secondary cancer in my liver. It hadn’t been in my nodes but had likely travelled through blood. They thought I was probably de-novo metastatic. Further testing of my original tumour and the new one in my liver established my cancer was PD-L1 positive so could be treated with the immunotherapy drug Pembrolizumab. I am guessing that’s what you are about to be treated with? I had this, plus more chemo in 2023 and achieved remission. I have had no evidence of cancer since despite being classed as incurable. I have regular scans and am not on any treatment. The journey wasn’t easy as the immunotherapy led to issues that needed to be addressed with high dose steroids. This immunotherapy can be an absolute game changer. Wishing you all the best.
1 Like
Thank you so much for replying, it’s honestly the first bit of reassurance I’ve had all month. It really means a lot to me. Did you do anything extra along with your treatment to make it more likely to work? I’ll be having 12 weeks of carb / plax with immunotherapy every third week (the one you mentioned) then 12 weeks of ec and immunotherapy then a masectomy- so a very intense treatment plan, but at least they’re not messing about
Hi ! I had a similar diagnosis last August . MTNBC in my liver ,spleen and various lymph nodes including in my neck .
I started on Abraxane and Pembrolizamud( immunotherapy) in September
Had a scan just before Christmas and I’ve had ‘an excellent response ‘
Lymph nodes now normal size and the two liver tumours and the spleen tumour have all shrunk .
Minimal side effects ,no nausea just constipation after each treatment but I get ahead of that now with Laxido
Fatigue!! Yes but a small price to pay
So treatable but incurable - I try to stay positive,the more time I can survive the more research may result in breakthroughs in treatment lines
It’s incredibly difficult emotionally,I can be ok then fear and sadness washes over me !
Hope you do well too
Viv
X
1 Like
I’ve been feeling the same, just so incredibly sad that it’s hard to imagine feeling normal! I got a call today to say I start treatment next week so really hoping it will work wonders on me.
If you have Instagram look up hope heals, she was given 12 months to live - 11 years ago! And shares lots of tips