Hi
FtF, I really hope you don’t have to battle to get the right treatments although what you have had to deal with for your sone might help you. A good friend of mine, who has had bone mets for over 15 years, also has a disabled sone and has the bit between her teeth for her own treatment as well. All I’d say is make sure you educate yourself about what treatment is right for your type of BC and be prepared to challenge any decisions you don’t think are the right ones. Also be prepared to ask for a second opinion if you don’t agree with the decisions by your own oncologist, a major research hospital will have a wealth of experience that some more local hospitals don’t. All I have done is make sure I know what the next step will be and that has helped me take some form of control, which is what we all lose when we’re plunged into this nightmare. I was like FF with my primary, as most ladies are, you don’t seem to have the time to consider what might be right or wrong and you accept every word your oncologist tells you as you just want to get the cancer out of your body and move on. With secondaries it isn’t going to be gone, it’s with you and you will have more than one treatment over the years so I learnt to know what was coming next. In fact with my original secondaries diagnosis I probably got it wrong and shouldn’t have had chemo but stuck to hormonal treatments but the thought of the hormonal taking longer to work than chemo was enough to convince me I should go the chemo route. Great news it stabilised the bone mets and got rid of the local recurrence but absolutely bad news it gave me heart failure! This then compromised my treatment options 5 years later when liver mets were also diagnosed. Luckily I was able to get excellent help with the heart failure and get it back to full working order but at the time I thought I was a goner, stress and anxiety doesn’t even cover how I felt. As to why us long term survivors can’t have the new drugs through the NHS it is unfortunately down to cost. Obviously if you have private health cover, like is needed in the US, you can get them but their cost effectiveness isn’t proven yet so NICE won’t put them on the accepted list for all patients. However the new drugs are always given in addition to a hormonal drug (correct me anyone if I’m wrong) so it is difficult to prove how much they enhance the effect of the hormonal in patients who have had more treatments as the drug trials have so far only taken place on 1st line patients, but hopefully in future they will be introduced as a standard for all long term survivors. Even without the newer drugs I have had 5 years out of arimidex originally and about 18 months out of letrozole (which was by then my 4th line of treatment). With your pathology report it sounds like to are hormone positive but I’m not sure about the percentages that are quoted. Usually ER and PR are marked out of 8 so 7/8 is highly positive, maybe the percentages are working out something else as 7/8 in my mind would be between 75% and 88%? Tamoxifen does work in a different way to the AIs (aromatase innibitors). I don’t think tamoxifen worked for me after my primary, but I could be wrong, after all my recurrence wasn’t for 5 years but by then I had my periods back which I’m sure didn’t help.
Hope all this helps with information gathering 😊this is what I’ve done over the years, find out from here as it’s far more up to date with opinions from oncologists all around the country (as we are all around the country ) so instead of getting a second opinion I’ve often had 10 opinions when I’ve asked a question which is great. Long make we continue to share and help others.
Nicky xx
