Angela, fully understand how you are feeling. We are all holding yor hand. Please let us know how you get on. As both you and movetothecountry are in our 'skinny' group, please feel free to look on the subcutaneous mets thread. There aren't that many of us and its great to have shared info in one place. Love to all. x
Hi Movetothecountry - mine was on my chest wall, my subpectoral area, in my skin and some nodes. I was told that it was a local-regional recurrence and that it was "not strictly curable". They never called it "secondary" cancer.
I know from experience that the letter from my original oncologist to my GP bore NO resemblance to what I was told at the meeting. I'd written everything down straight after it so that I knew what had been said. I would recommend taking your husband, or another family member or friend, to future meetings and get them to make notes. It's very difficult to take things in at such worrying and stressful times.
That's good news that you feel as though things might be a bit better after a cycle of capecitabine. Many ladies have taken it very successfully for many years. My way of looking at it is that they testing new treatments in clinical trials all of the time, many are immunotherapy or targeted treatments. There are lots for TNBC. I figure if I can eek things out long enough there'll be something better coming along. It's not that many years ago that Herceptin was a major breakthrough for the HER2 ladies. That's now standard treatment for HER2+ cancers and has transformed so many lives.
I know what you mean about UK oncs typically not being very holistic. Doing natural things, such as adopting a mediterranean diet, can only be good for you. Something that seems to have been mentioned more and more recently is Vitamin D. Things like yoga, Thai Chi, mindfulness are also thought to help.
Sending you warm wishes.
I'm still not sure if my returned TNBC is a recurrence or a secondary, and does that make any difference when it's now in the skin/chest wall?
I was feeling okayish about it all until I returned home yesterday to read the copy of the letter from the onc appt 3 weeks ago, which I really don't think I was told all that the letter says I was told, some of it may have been alluded to but I don't think it was actually said, I'll ask my husband to read it later as he came with me to the appointment
For now I take comfort that after a cycle of capecitabine it feels no worse, if anything it feels a bit better
I'd like to think that I could change my outcome by boosting my immune system but think the oncologists are chemical people and not at all holisitc, my little girl is only 4, I just want her to have a mummy for a lot longer