Im 3 years since diagnosis
2 years since my last hospital treatment.
I finished Zodalex September last year and im now back on Tamoxifen.
However for the past year have been having investigation into raised ALPs which was found because I was complaining of joint paint and since oncology and rheumatology couldnt find anything that rendered them needed they discharged me to my GP whom since about July 24 have been continuing the watch and wait game however recently Ive had 3 pages worth of blood tests because not just raised ALPs but other things are raised like thyroid and other liver enzymes.
I still get the joint paint where the oncologist seemingly diagnosed me with osteopenia ( was never told this formally in person was told by a very unhelpful and unwilling GP) and my anxiety is just a bit all over the place in terms of being 27 and having all these tests again.
I worry as im trying to move on with my life and move out with my fiance somethings going to ruin it for me.
Hi @KirstieF sorry to hear about your diagnosis. I am in the same boat as you (not as young as you!). I was 43 years old when diagnosed back in July 2021 and had my last zoledronic acid in October 2024. I’ve finished taking Abemaciclib in June last year and now am on 3 monthly Prostap injections, Letrozole and antidepressants for the hot flushes.
I am not sure if tamoxifen can give you the joint pain. Letrozole for sure can. I’ve tried so many things and at the end had steroid injections in my knees and honestly, it was a ‘miracle’ after a year of constant pain.
My liver enzymes were also raised last time I had blood tests. I want to start Veozah for the hot flushes and I can’t because of my liver enzymes results so I need to see a hepatilogist.
I am also having counselling privately and honestly am not sure how I feel now that I have only one pill to take. I was diagnosed with very advanced and invasive Lobular breast cancer that has spread to the lymph nodes so I know that the chances of it coming back are very high but I try to take each day as it comes, not to sweat the little things and stay positive for my children.
So the answer is yes, it does get better but there are some good and some bad days and it’s always at the back of my mind. Though, I no longer wake up every day and think is it coming back?!?