I can relate to what you are saying, Sam09. I was diagnosed with mets in the spine in April last year. Initial diagnosis was September 2012 (left breast and lymph nodes). Initial biopsy concluded I was Her2 negative however, after mastectomy, pathology stated there was enough evidence to say I was Her2 positive. Had chemo, mastectomy and radiation and one year of three weekly Herceptin. Chose to have other breast removed six months later to increase my chances of the cancer not returning.
When diagnosed last year with bone mets, my world changed forever. My oncologist told me right from the start that, now that the cancer had metastasized, I would never be 'cured'. The aim is to keep it stable and she said that she had a number of patients she has been seeing for years who had an initial diagnosis similar to me. So, since April last year I have had radiation, chemo (Taxol), three weekely Herceptin/Perjeta infusions, monthly Xgeva injections and daily Letrozole tablet. I have also been told that the Herceptin/ Perjeta will continue indefinitely. They are regarded as the latest 'you beaut' drugs for Her2 breast cancer and my oncologist said that, if the cancer returns, these drugs slow its growth significantly.
Like you, I'm still getting my head around having to live with this. I see myself as someone who lives with a chronic illness that needs to be managed (similar to someone living with diabetes, for example). I do not want to be defined by the cancer yet I know some people think this. Also, things happen now and then which rock my boat. For example, yesterday I was looking at a cruise I would like to go on later in the year and then found that it will be very difficult for me to get any type of travel insurance because my cancer is metastatic. It's like I've entered another dimension in the world where there is no going back.
The only thing I try to hang on to is that I am grateful that treatments seem to be discovered all the time so that, the longer I can remain stable, the more chance I have to live for a long time.
Good luck with everything.
