Hi
i had a full hysterectomy, including ovaries etc, 9 weeks ago now, to remove 19cm leiomyosarcoma.
The doctors said it had started to push its way out of my uterus, therefore most probably leaving nasty cells behind. It’s already spread to my right lung, three small, stable tumours.
I was all ready to start radiotherapy, but just been told that they are going to leave that for now, as I am currently well, in myself, and they will re scan in 6 weeks to see if anything has re started, then give me RT if it has, as it can only be given once.
Meanwhile, I’m about to start letrozole to suppress any hormones, as some of the sarcoma hormones were positive , as hormone related.
All a bit confusing, but I guess I just have to wait and see what happens now.!
Hi Jane. I am on anastrozole now, but started on letrozole. Side effects are very similar to going through the menopause, hot flushes, bone and joint aches. I also get brain fog and fatigue, but it has been very successful for me so far controlling the hormones and keeping the tumours at bay. I have had an oncology appointment today which I will do a post about shortly.
I think it is a good idea to wait and see if you need the radiotherapy, as you say it can only been given once, and fingers crossed you might not actually need it.
Take care x
It had already spread to my lungs before I started the hormone treatment, but has remained stable since. It is not easy, some days are better than others, and my life has change completely. I can no longer work because of the side effects of the medication. But to be stable for 7 years, I feel very lucky x
