I was told after my hysterescopy (brutal experience) that I have cancer but they can’t tell me exactly what kind ect because I’m a challenging case apparently. I know I have a sarcomatous malignancy? Adenosarcoma with areas of high grade transformation and rhabdomyosarcomatous differentation?? Does anybody else have this and can help me u eerst and what on earth I have?? My docs meet up on Wednesday to discuss my treatment and my hysterectomy is booked thank you
Hi Shazz79
Welcome to the Womb group.
I am sorry to hear that you have had a diagnosis of cancer.
Most womb cancers start in the lining of the womb (type1) but some people can have a type 2 cancer. My own cancer was a type 2 mixed cancer called carcinoma sarcoma. It is also a high grade cancer. There are different types though and they can behave differently. My own cancer, despite the name, behaves and responds as an endometrial cancer and is treated as such.
A sarcoma starts in soft tissues/muscle tissue/bones and connective tissues. Rhabdomyosarcoma starts in the muscles/soft tissues. Adenosarcoma is a type of uterine sarcoma.
However, whatever type of cancer it is, most ladies are still given the same initial treatment- a hysterectomy.
What I would expect to happen is that after the MDT the doctors will give you a provisional stage/grade and perhaps some other details about your particular type. All ladies who have a hysterectomy would have post op pathology done and then at this time they will look more in detail at any tissue removed and should then be able to confirm the diagnosis.
It is the post op pathology that will be the deciding factor in whether any further treatment is recommended after the surgery.
Depending on what is discussed at the MDT, we do have a forum on here for soft tissue sarcomas and if you have a look there are posts regarding rhabdomyosarcoma. It may well be that you will find both this group and the soft tissue group helpful.
Soft tissue sarcomas forum | Macmillan Online Community
Hope this helps a bit. We do also have the Support Line if you feel like talking things through would help.
Jane
If you click on my name my profile will come up and it will give times/treatments etc.
I used to think that cancer was just cancer, I didn't realise all the different types until I began this journey. My advice is to think of it like this. They will confirm your type/stage/grade post op. At the moment you are having the standard treatment of a hysterectomy. Most ladies on here have had straightforward experiences of the op. I know for me it was a lot better than I thought it would be and I recovered well.
All the different types/stages/grades are important in determining any follow up treatment and are about deciding which follow up treatment is most effective for your type. Most high grade womb cancer is offered some follow up so it might be an idea to prepare yourself for the possibility. With higher grades they tend to treat it more aggressively initially to try to reduce the risk of recurrence. So for me, although I was stage 1, because it was a high grade I had chemo and radiotherapy. If I had been stage 1 and low grade, the op may have been enough. Its what comes back post op that is important. That's where the type will be important because some cancers respond better to different treatments.
I wish you well with you surgery on the 26th. If you have any questions please do ask. My op was straightforward and done via key hole. I had little pain after and recovered quickly. I was in hospital for 1 night. It was a case of taking things easy, no lifting etc but I was able to go for short walks pretty much straightaway. For me the to be honest the hardest bit was doing the anticoagulant injections.
Jane
