Rare womb cancer - uterine tumour resembling ovarian sex cell tumour UTROSCT

Hello, can I suggest that you try The Rarer Cancers Foundation http://www.rarercancers.org/ - they might be able to put you in touch with someone who has the same cancer. xx

Hi Neets. I don't have experience of your cancer but I do have one of the rarer uterine cancers, serous carcinoma. It also acts like an ovarian cancer in that it creeps across the surface of organs so spreads silently, leading typically to late diagnosis. Perhaps I can share some experience? 

I'm really sorry you have had this diagnosis. I can see how it would be utterly terrifying, especially coming out of the blue like that. I'm going to risk saying something now. In my experience one of the hardest things to cope with is the loss of control and choice that comes with a diagnosis. I've found it very helpful to regain control wherever I can and one way is to choose to concentrate on the positives. It's hard and takes some practice. But here goes with some thoughts about the positives of what you have shared. 

First, your doctors were vigilant and thorough enough to spot this disease. Second, surgery is the primary treatment and often is a cure for women diagnosed early enough. If the cancer has not spread beyond the uterus then that is early diagnosis. Very often, radiotherapy is offered as a belt and braces to make sure any stray cells get mopped up. Third, your treatment will be tailored to your needs. It sounds like you have an amazing team looking after you, ready to do the research to find the optimum treatment. Fourth, and this is very much a lay perspective, it seems to me that no matter how rare the cancer, the treatment is broadly the same: surgery with the hope of achieving a cure; +/- platinum-based chemo; +/- external radiotherapy; +/- internal radiotherapy (brachytherapy).

I really hope this helps. Each of us has our own unique journey with this but there's lots of experience in this community of how to cope with the physical, mental and emotional challenges of diagnosis and treatment. 

Wishing you all the best for Thursday. Do you have someone to go with you? Xxxx

Thanks for your kind words, and you're right there are lots of positives to focus on. At the moment I'm enjoying some time off work to spend with family while I recover from surgery, and getting paid too so it's not all bad!  My husband is coming with me on Thursday. xx

Hi. Just to wish you all the best tormorrow. xxx

Hi  just wonted to say good luck for Thursday and I glad you have someone to go with you. Sending you hugs

Good news! No other treatment required, just regular checkups. So glad I had the operation, it appears to have been a success! Good luck to all of you that are going through treatment at the moment, or waiting for news. It's always an anxious time. 

That is such amazing news. I'm so happy for you. Give yourself time to recover though. You've had major surgery and a potentially life changing diagnosis to come to terms with so take it easy - and be kind to yourself. Have a very happy Christmas xxx

That's great news :) Take it easy, and enjoy Christmas!

Hi - I realise this was posted a few years ago but I have just been diagnosed with this cancer and would be very grateful for any contact with others who have it. I have previously been diagnosed with breast cancer so realise now how priveliged I was to be swimming in information, a very defined treatment path and a big community to connect with. This feels very different. I'm resorting to trying to read academic articles. 

Hi  welcome to the community, though sorry you find yourself here. Hopefully the original poster will get back to you as I can see they last posted only 7 months ago and they will hopefully get a notification that there is new activity. My wife also has a rare cancer though not nearly as rare as yours so I can appreciate a lot of your feelings even if second-hand.

Some of the replies about, the reference for instance to the rare cancer foundation can be helpful but when you are at the stage of just diagnosed things are extra tough for everyone.

<<hugs>>

Steve