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

Hello,

I am sorry to hear that you have been diagnosed with a rare type of womb cancer.

I will be reading posts on this subject with great interest, I have never heard of this type of womb cancer so unfortunately I am a little in the dark about it and be very interested to find out more about it. 

Hello Julieo25

Welcome to the community although I'm very sorry you find yourself once again on this journey. What a desalt acting blow this must be for you.

I'm sorry I haven't any experience of your particular cancer but would suggest if you haven't already that you try the Macmillan helpline (number below)  as they may be able to point you in the direction of good quality information and also of reputable websites/foundations. Have you been allocated a Clinical Nurse Specialist? S/he may not have direct experience of  your type of cancer but if you're not a scientist  s/he might be able to help you interpret the academic articles you're reading. Sorry, that isn't meant to patronise you in any way but if, like me, you're not a scientist,  then reading these articles isn't always easy! 

I hopesomeone will come along soon with relevant information. Meanwhile sending you a big hug and positive thoughts. 

Thanks Steve. I've put out a few messages in BC communities that I've been part of for a number of years but even just knowing there are some other people around is comfortin. I'm under the care of a London teaching hospital so know I couldn't be in better hands but even they don't know too much.

Thanks Fairycake

Agree that reading academic articles as a non-scientist is a little tricky! I haven't tried the Macmillan number yet as I've spent a few days where I've just been trying to process things. Being diagnosed for a second time with a different cancer has floored me a bit. However just having a few replies has made me feel connected and reminded me how valuable forums were to me the first time I was diagnose.

Thanks for the hug.

Thanks Gbea. These messages feel very supportive

Hi, I have just been diagnosed with UTROSCT after having a hysterectomy in December.  I am currently awaiting a CT and would like to hear from anyone else that has this cancer diagnosed.

Hello  i am sorry to hear about your diagnosis, unfortunately I don’t have any experience with this type of rare womb cancer. But I hope that others who have can share their experience and knowledge with you. Sending you a gentle hug.

https://medium.com/cancer-in-london/how-does-treatment-for-common-and-rarer-cancers-compare-2e47510161f1

Hi Lol60 - I was diagnosed with this is May 2017. Hope you are ok? Are you aware of how rare it is? It’s a massive relief to connect with someone else who has it. I wrote a piece for NHS England. It would be great to be in contact

Julie 

Hi Julie. Have just read your helpful NHS article. It’s amazing to find someone who has gone through this.  I’m 56 and was diagnosed with a UTRSCOT Dec 20 and total hysterectomy Jan 21. It’s so hard that there is no clear info on the likelihood of recurrence due to it being so rare or any set pathway of on going follow up. My gynae oncologist has never come across a case in his 25yrs as a consultant. I was wondering if you’d be happy to share how you're doing now and if you're being regularly reviewed. Many thanks Sarah