UTROSCT

julieo25
julieo25 Member Posts: 5
in Uterine/Endometrial Cancer #1

Hi everyone. I'm in the UK and trying to find anyone who has been diagnosed with a Uterine Tumour Resembling Ovarian Sex Cord Tumour (UTROSCT) I had Breast Cancer in 2009 and following treatment was put on Tamoxifen (initially for 5 years, but during my treatment UK medical thinking was revised to giving Tamoxifen for 10 years).

In March 2017 I have a total abdominal hysterectomy because of an enlarged uterus caused by fibroids. Subsequent histology has confirmed there was a tumour. Ive had a CT scan and it does not appear there has been any spread but there is fluid in my abdomen and I'm having follow up scans. 

UTROSCT is exceptionally rare with >100 cases reported worldwid. I'm trying to find anyone who might have been diagnosed and I'm trying to see if there is any link with Tamoxifen (couple of reported cases think this is possible)

When I had BC I was inundated with info. This feels very different.

Any help gratefully appreciated

Jules

 

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #2
    Hi Jules,

    Hi Jules,

    I don't have any information on your type of uterine cancer but wanted to welcome you to our board. I had UPSC - Uterine Pappilary Serous Carcinoma which is also a rare high grade cancer. They treat it the same way that ovarian cancer is  treated, so my guess is that's what they will do with yours too. UPSC is not nearly as rare as yours is - about 15% have this type.

    I'm sorry that you are having to deal with this. Please come back and let us know how you are doing and what comes next for you.

    Love and Hugs,

    Cindi

  • julieo25
    julieo25 Member Posts: 5
    #3
    TeddyandBears_Mom said:

    Hi Jules,

    Hi Jules,

    I don't have any information on your type of uterine cancer but wanted to welcome you to our board. I had UPSC - Uterine Pappilary Serous Carcinoma which is also a rare high grade cancer. They treat it the same way that ovarian cancer is  treated, so my guess is that's what they will do with yours too. UPSC is not nearly as rare as yours is - about 15% have this type.

    I'm sorry that you are having to deal with this. Please come back and let us know how you are doing and what comes next for you.

    Love and Hugs,

    Cindi

    Bless you Cindi much

    Bless you Cindi much appreciated X

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
    edited August 2017 #4
    I'm sorry

    I can't help. Please tell us more as you learn. 

  • bluebell10
    bluebell10 Member Posts: 1
    #5
    Yes!!! I have! I'm also in UK

    Yes!!! I have! I'm also in UK and was only diagnosed in June this year. I'm glad a cane across this post as I've spent hours and hours trying to find more info out about this rare tumour 

  • julieo25
    julieo25 Member Posts: 5
    #6
    bluebell10 said:

    Yes!!! I have! I'm also in UK

    Yes!!! I have! I'm also in UK and was only diagnosed in June this year. I'm glad a cane across this post as I've spent hours and hours trying to find more info out about this rare tumour 

    Bluebell - I've just sent you

    Bluebell - I've just sent you a DM. Didn't realise you were in the UK. I'm very happy 

  • julieo25
    julieo25 Member Posts: 5
    edited November 2017 #7
    bluebell10 said:

    Yes!!! I have! I'm also in UK

    Yes!!! I have! I'm also in UK and was only diagnosed in June this year. I'm glad a cane across this post as I've spent hours and hours trying to find more info out about this rare tumour 

    Are you still out there?

    Bluebell -love to make contact

  • AnnikaMK
    AnnikaMK Member Posts: 2
    #8
    Hi, I can see this thread is

    Hi, I can see this thread is a bit old. Are you still active? I too have the rare form called UTROSCT...

  • cmb
    cmb Member Posts: 1,001 Member
    #9
    AnnikaMK said:

    Hi, I can see this thread is

    Hi, I can see this thread is a bit old. Are you still active? I too have the rare form called UTROSCT...

    Try Contact User

    AnnikaMK,

    Julieo25 has not logged into the board since February, 2018. But you can try sending her a message by clicking on her profile name and selecting "Contact user." She'll get an email saying that she has a message on this board. Hopefully she'll read it and respond to you.

    In the meantime, do let us know what treatment has been completed or is planned for you. While most of us are not familiar with your specific type of cancer, treatments like surgery, chemotherapy and radiation are common for other forms of uterine cancer and we'd be happy to share our experiences with you.

  • AnnikaMK
    AnnikaMK Member Posts: 2
    edited November 2019 #10
    cmb said:

    Try Contact User

    AnnikaMK,

    Julieo25 has not logged into the board since February, 2018. But you can try sending her a message by clicking on her profile name and selecting "Contact user." She'll get an email saying that she has a message on this board. Hopefully she'll read it and respond to you.

    In the meantime, do let us know what treatment has been completed or is planned for you. While most of us are not familiar with your specific type of cancer, treatments like surgery, chemotherapy and radiation are common for other forms of uterine cancer and we'd be happy to share our experiences with you.

    Thanks!

    Thanks for the info. I have now done that!

    As for myself I was first diagnosed in 2017 with breast cancer and just weeks after with this rare uterine cancer called UTROSCT. Surgery, chemo and radiation (breast) was my treatment.

    Unfortunately my uterine cancer is back, again surgery and now chemo.

    The doctors do not know if this is treatable but hope to slow it down. Let's see what happens.....

    If anyone knows something about treatments I more than happy to find out more, connect with someone in the world that has some good intel...

    Thanks!

  • Forherself
    Forherself Member Posts: 963 Member
    #11
    We welcome you

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3971308/.   This is an article I was reading.  You can copy and paste the link.  You do have a very rare type of growth.   Both of these patients had little treatment.  One just hormone therapy.   I did not know what the sex cord is, and read about that too.  All of these different cell types can go bad.   

  • Forherself
    Forherself Member Posts: 963 Member
    #12
    Second opinion?

    Too.  Most of the uterine or endometrial cancers pathology is not as cut and dried as we think.  They are mixed up.  Have they had several people look at your biopsy to confirm?   Sometimes there are more than one type of cell in a biopsy.   Have you had a second opinion?

     

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