.
Hi Brooky
My wife has Leiomyosarcoma, hers was incurable from the start and just getting to a diagnosis was challenging, her cancer being discovered some time after her hysterectomy because the lymph nodes did not return to normal.
Initially the doctors went for watch and wait but then decided to try chemotherapy - the first one was fairly effective against the cancer but caused some other significant problems and so had to be stopped. They did manage to fix those issues and then decided to try a different type - it managed to render the cancer stable and we have now been living with cancer for over 10 years.
While I do not have prostrate cancer I do have a benign enlarged prostrate so can relate to some of the issues.
I often meet people on our Carers only forum and Family and friends forum and often they feel the patient is coping better than they are, part of that can be related to anticipatory grief - I know I spent a lot of time worrying about how I might cope after Janice was dead - well so far that plan never happened.
We have a son who was about 7 when Janice first got ill, he has known all along - bit tricky not when Janice kept going in to hospital. The good news in talking is it can create a bonding and a sense of belief that he was included. One question he asked was what would happen to him if I died too - fortunately we had thought of that because his aunt and uncle are named as guardians in our will.
You might also like to look in on us in Soft tissue sarcomas forum and possibly too look at the sarcoma uk site
<<hugs>>
Steve.
Hi Brooky
Welcome to the Womb group. I hope that you are recovering from your surgery.
My diagnosis was also Carcinoma sarcoma. I also had LVSI and invasion into the muscle of the womb.
Although it has sarcoma as part of its name- it is not a sarcoma and it is treated the same as an endometrial cancer. It normally responds in the same way. It is put simply a mixture of cancer cells. So the best place to post for support is here. Soft tissue sarcomas and uterine sarcomas are a different type of cancer.
Because it can behave more aggressively it is normal to be offered some follow up treatment after the surgery. I had chemotherapy (paclitaxel and carboplatin) and I also had 25 sessions of external beam radiotherapy.
The chemotherapy is to mop up any stray cells that have escaped whole body wise. The radiotherapy is normally aimed at the top of the vaginal vault and at the pelvic lymph nodes to mop up cells there- so to help prevent a local recurrence.
I am now seen every 12 weeks for check ups.
I finished treatment in September 2022 and remain well at almost 2 years post treatment. I have another check up in September and I will then be on patient led follow up for the next 3 years. Do not give up hope.
I am sorry to hear about your husband's prostate cancer. It must be a challenging time for you both. I see that Steve has recommended the Carers and Family and Friends forum- and these are good places to get some support. If at any point talking things through would help, then please do give the Support Line a call. The details are below.
I wish you well with your treatments and if you have any other questions about the carcinoma sarcoma or the treatments, please do ask. It can feel overwhelming to have such a diagnosis and to have the treatments all set out in front of you- but I did find once the treatment started it did go quicker than I thought.
Jane
I am glad it helped.
Types of womb cancer | Macmillan Cancer Support
I have popped a link to show about carcinoma sarcoma- it is treated as an endometrial cancer
Am glad you are feeling brighter.
