Metastatic Breast Csncer

Hi TCBH and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Hi TCBH 

I am sorry you find yourself in this situation. I was also initially diagnosed in 2022 (in February) and thought at the time that my cancer was early stage. Small tumour, no lymph node involvement. I did however have vascular invasion, and it was grade 3 TNBC. I was advised to have adjuvant chemo for risk reduction reasons, became ill with infected diverticulitis part way through that, had a CT scan, and found a liver met as an incidental finding. I had an unsuccessful liver ablation in Dec 22. During 2023 (now with 2 liver tumours) I went on immunotherapy (Pembrolizumab), which shrunk the tumours considerably but also led to my immune system going on a major spree attacking kidneys, thyroid, lung etc. I have subsequently had another ablation. 

I honestly thought my days were numbered when I first found out about the met in September 22. I went on a mindfulness course, which gave me a few tools for settling myself, getting to sleep etc. I took the decision not to ask for a prognosis but to try to live each days as well as I could. I have been lucky that my cancer load has never been high and hasn’t of itself caused a problem. Some of the consequences of the immune adverse event were awful and I am still weaning down from high dose steroids some 7 months later.

Lots of people live well with secondary cancer. It helps to think of it as a chronic condition that will need treating, rather than as something with an inevitable end point.  It’s also worth asking about ablation. 

This is my blog. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

Thank you so much for your reply. I will take a look at your blog now. How are you currently feeling? 

I still have a number of issues from the mmunotherapy adverse reaction but am otherwise physically OK. Mentally I haven’t had problems other than the first few days after finding it had spread. It’s been one of those journeys where negative changes have been taken in small bites. Hope you are ok too 

I just trying to get my head around it all. I must ask my oncologist about ablation as it hasn’t been mentioned. Thank you. 

It’s only an option for small tumours and probably there needs to be not more than 2 or 3 of them, and no disease elsewhere. They also need to be away from major blood vessels. I have had the procedure twice, there are a couple of entries in my blog on what it’s like to have it done. Not sure what type of breast cancer you have, but the fact that I have metastatic tnbc, which has fewer treatment options, might be a factor in my team offering ablation.

The first ablation didn’t lead to full elimination of the tumour, unfortunately. I have a high grade, very aggressive cancer, and it grew straight back and also popped up elsewhere in the liver . I don’t know how effective the second one has been yet, as you wait 3 months for a follow up scan  I am however more hopeful as the immunotherapy had significantly reduced it in the time until I had to stop treatment, and the residual effect of the immunotherapy in my system kept the remaining cancer stable for the 5 months between stopping immunotherapy and having the ablation. Scan is next month, so fingers crossed  

I am being treated at a large city hospital, it might not be available everywhere. It needs a heptobilliary specialised interventional radiologist to do it, and a radiology day case unit equipped with CT.