Secondary TNBC

Hi Shellee 

I don’t know how many parallels there are with my story (you can click on my name to see mine), but I also got a surprise diagnosis of secondary tnbc in my liver. I started in Jan 22 with a recall from a mammogram, a supposedly early stage tnbc with clear margins and nothing in my lymph nodes. In August of the same year I became ill when on adjuvant chemo, had a CT scan to diagnose the abdominal problem - and found I had cancer in my liver as a bonus accidental finding. Cancer had travelled through blood, not lymph. Long story after that but I am still here. So I am confident I, and many others on here in a similar boat, will understand. I found most people didn’t understand what secondary cancer is and why it’s not curable. Didn’t understand what tnbc is and why the treatments many people with breast cancer have don’t work on it. Didn’t understand that I couldn’t just have a liver transplant or some other supposed magic cure. Don’t understand how I can be stage 4 but not lying bald and frail on a hospital bed hooked up to a drip. Look too well to have incurable cancer. 

Happy to support. 

Pretty similar to me. Lymph nodes all clear so through blood it looks like. I was on a trial 3 at St BARTs in London and it worked for 10months until a routine scan showed a little progression. Having routine scans to start another treatment and it showed I had 3 specks on my head they were zapped on Wednesday. I’ve chose to stay down there I refuse to go back to Stoke as a oncology appointment with a certain oncologist (never had him before but I’d heard hell stories about him) tore my world apart in 20mins but that’s another story. 

Oh goodness. Sometimes I think they just don’t think about the impact of what they say. For them, it’s just another person on their list; for us it’s our life. I am ok with realism but they don’t need to do it in an awful way. Sometimes our responses to treatment surprise them - my consultant really didn’t expect the response I have had. 

On the whole I think I have been very lucky with my oncology team. When I became very ill on pembrolizumab my oncologist’s then registrar had just started her rotation with my oncologist. She had previously been working on melanoma, where pembro is well established, whereas I was one of the first 2 people in my hospital to go on pembrolizumab for tnbc just after it had been approved. She therefore had experience the rest of the breast cancer oncology team didn’t have, which was a godsend when I hit major difficulty. That lack of experience is also probably why my oncologist has always been more pessimistic about my chances than current reality suggests.

I am sorry you had to have some specks on your head zapped and hope it was successful. The interventional radiologist has said he will keep on zapping my liver if necessary in the future. I hope we can stay with it for long enough to benefit from the things in trial. 

When you feel able to, it is worth putting a brief potted history into your biography as it saves you repeating it for people. I have the short one in my bio, and the very long one in my linked blog.