This is a very interesting thread. I don’t post much, but I do read comments regularly. I don’t particulalry want to get invovled with ‘whys or whats’ here. But I must say that I feel very similar to what JaneRA had to say on her first post. I too had a recurrence with wide spread to all lymph nodes and vascular invasion. I had to have total mastectomy and my reconstruction removed, as the tumour was not only on the reconstructed boob but the chest muscle. The surgery was successful and very painfree (surprisingly). I had the choice of chemo and rads or either and Arimidex. For me it was a very difficult decision indeed. Every member of my family on my mum’s side has had breast cancer and most have died from the disease despite all the normal treatment, although my mum is still with us (aged 84). I did question the consultant intensly and it was a rather uncomfortable and challenging discussion over 3 appointments. I really wanted him to answer whether having a lot of other treatment would actually improve my survival rate. He just could not answer this - as I knew he would. We all know - and Jane RA is the one for the percentages - that this disease is so totally unpredictable. Some survive, some have a lot of treatment and then die, some have some treatment and not others - the list goes on. The survival rate generally has improved with newer treatments and can buy a lot of ‘extra’ years. Ultimately, this is a decision we all have to make for ourselves and it obviously so depends on our lifestyle/age/family committments etc. I first had breast problems in my early 40s’ involving a lot of surgery, then a primary dx at 50, a recurrence at 57 and I am now 3 years down the line from that. So, basically I have been living with some sort of breast problems/cancer for 20 years! I did have chemo in the end, but not the full dose as too many side effects, but refused rads and was on Arimidex for 3 years. I too am completely fed up with the rounds of hospital visists etc, although thankfully nothing as invasive as some of the others here have expressed. But it just neve goes away, I have 3 monthly bloodtests, 3 monthly oncology appointments and had so many scans etc. I lost count. My husband tells me that I am just not the person I was any longer , and he does not mean this unkindly, having been totally supportive. I have become anxious, worried about anything and everything,had to give up work, unsure about driving , have lymphoedema on the upper arm and chest wall, which restricts a lot of my hobbies, and sleep very badly. Had all the normal counselling etc., but my life has been changed beyond recognition. I am now having a total CT body scan booked for next week as my consultant is a bit worried about my supaclavical swelling, so more tests, more waiting etc.
Would I go though more treatment if I had secondaries diagnosed? I really don’t know? I suppose it depends on the stage/state and where they are. But my thinking tends towards the ‘palliative’ option.
At the end of the day, we are ultimately in charge of our destiny and if we make a decision that is right for us, I think our ‘nearest and dearest’ need to respect that.
Good luck to everyone with whatever decision they come too, and I too hope I have not upset anyone with my comments.
Birgit