Mesonephric Cancer

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Hello Everyone,

I just wanted to introduce myself and ask some questions. I have had major surgery which was debulking surgery and removal of a kidney due to being diagnosed with uterine cancer stage 4.

I will be having both chemo and radiotherapy. However I have a very rare cancer called mesonephric (so far only 44 cases in the UK). I have not had an appointment with my oncologists yet.

Does anyone else have this type of cancer?

Also how long after surgery should your chemo and radiotherapy start?

I look forward to hearing from you.

Thank you

  • Hi  and welcome to the Online Community. As you say, you have a very rare cancer. I looked in our own cancer information section and couldn't find anything but other research reveals it's an extremely rare form of Cervical Cancer so it might be a good idea to also join our Cervical cancer group. Someone there may have an answer for you.

    In my own situation I had my hysterectomy in September and my Brachytherapy treatment started 6 weeks later. 

    The waiting to see Oncologists is soul destroying but once the treatment plan is outlined things will be easier.

    It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username.

    If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

    It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

    There is also an Ask an Expert section, but you should allow two to three working days for replies from our expert team.

    To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section

    Sending you welcoming hugs, B xx 


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  • Thank you so much for your helpful advice. I will update my profile and join the Cervical Cancer group. Finningley my cervix was OK, although it was still removed.

    Thank you so much. 

    Rajkgill 

  • Hi Rajkgill, I too have mesonephric adenocarcinoma. A club nobody wants to join! I will move over to the ovarian forum and maybe we can help each other x

  • Hi Lucids,

    Thanks for  replying. So glad I can talk to someone who has the same type of cancer and it will be great to support each other. It is a shock when your surgeon tells you that he can't say much about your prognosis.

    xx

    Rajkgill 

  • Hello, how are you doing? Where are you in the Uk? I am near Brighton. X

  • Hello, I am recovering from my surgery and the pain is subsiding. This week I had a CT scan and kidney functioning test. Then next week I meet with my oncologist to get my treatment plan. 

    When were you diagnosed with your cancer and how is your recovery going? Also what treatment did you have?

    I live in East London and my treatment is at BARTs. Where is your treatment?

    I used to go to Brighton a lot in the 1990s. I used to visit a vintage shop called Revelations. It is no longer there.

    XX

    Rajkgill 

  • I was diagnosed last year. I have had surgery and am having radiotherapy at the moment. How can we talk privately? 

  • Hi Lucids,

    It will be great to talk as I met my oncologist on Tuesday and I will start my radiotherapy in a month's time.

    Rajkgill 

  • Hi  - I just noticed your post. You can Privately Message each other. Click on the ID of the person you want to Request friendship. When they accept your friendship request you can message each other securely. Once you have a message you'll notice on the top righthand side of the screen - second icon in will indicate you have a message.

    Hope that helps, Barb x


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    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett