Hello there,
My name is Jordan, I'm 40 and live in North London. My dear mum was diagnosed with endometrial cancer in late March last year. She had a total hysterectomy on 20th April and had a couple of readmissions to hospital post surgery but is now recovered from the surgery. She got the results of the histology from the tissue they removed and she has grade 3b carcinosarcoma. Although all the scans (CT, PET, etc.) found no more cancerous tissue, because of the stage of her cancer and therefore the likelihood of microscopic cancer cells remaining somewhere in her body, she was advised to have 6 cycles of chemotherapy.
I initially contacted a the MacMillan Nurse line when mum was diagnosed with a tumour in the womb in March, as we didn't really understand the diagnosis at the time. Mum had colorectal cancer in 2008 and had radiotherapy, surgery and chemotherapy then. The biopsy sample taken when she had a hysteroscopy indicated it was a secondary cancer of colorectal origin. The MacMillan Nurse I spoke to was excellent and explained a lot about how cancer and secondary and primary cancers work.
Anyway, when mum got the results of the histology from her operation tissue and it happened to coincide with a Radio 4 interview and BBC documentary with Professor Hannah Fry. The oncology team at Addenbrookes in Cambridge advised mum to have six cycles of Carboplatin and Paclitaxel but mum already has peripheral neuropathy from her colorectal cancer treatment 15 years ago. Mum was so worried about the possibility of being left debilitated by worse peripheral neuropathy if she had more chemo and I think (although we both thought the interview and documentary were excellent and raised some important and valid points) the interview and documentary made her question if it was worth going ahead with the chemo. Mum had also heard a lot about immunotherapy and wondered whether she could have this, especially if it had fewer side effects.
This is when I found the MacMillan online community and suggested to mum that I post and see what other peoples' experiences were. I had a read through the many excellent posts and put a post to see if anyone else knew about endometrial carcinosarcoma. I've had some very helpful and lovely replies so far. I would definitely recommend using the online Macmillan community.
Unfortunately, last Friday (27th Jan), we found out mum's cancer has come back in two areas of her vagina and she has a consultation tomorrow (31.01.203) to go over the prognosis and treatment options. This is very hard to digest, especially after her having completed the chemotherapy. I'll keep you updated.
Much love
Jordan x
