Mesonephric Endometiral Adenocarcinoma

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peachie60
peachie60 Member Posts: 6 Member

I am wondering if anyone has had or know someone that had Endometrial Adenocarcinoma?  I am trying to find a survivor of this very rare cancer, but so far I have not had any success.  I was diagnosed in August 2015 with this very rare cancer.  I was misdiagnosed for 6 months from various doctors treating for a UTI even though my cultures were normal.  This particular cancer mimics a UTI, the burning when you pee, pain, and lastly spotting in urine. It wasn't until I finally changed GYN doctors again, and this doctor did an endometrial biopsy.  They sent it away to Cleveland Clinic who confirmed the diagnosis.  

I will be a 2 year survivor this August 2017.  I am experiencing extreme fatigue right now, with chronic fibromalgia pain and Osteoarthritis.  I am trying to work my full time job but I am having a time staying active.

Any support, or  help is appreciated.

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  • lynzip
    lynzip Member Posts: 3 Member
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    I was diagnosed with this cancer in July 2022 and like you, have been unable to find anyone with the same cancer. I hope you are still monitoring this site. Kind regards

    LynZip

  • peachie60
    peachie60 Member Posts: 6 Member
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    Hello Lynzip,

    Sorry to hear that! How are you doing and where are you from?

  • scjayhawk
    scjayhawk Member Posts: 1 *
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    I was diagnosed with this a year ago, 2023, at stage 4B. Currently, NED. Hope y’all are doing OK.

  • lynzip
    lynzip Member Posts: 3 Member
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    Hello Peachie60

    So good to see your response, very encouraging 👌🏻

    Hello Scjayhawk

    Thank you for responding. Great news!
    I am from Qld Australia. I was diagnosed in 2022 with MLA, Stage 1b but high grade (3). I had a total hysterectomy, 6 cycles of chemo, simultaneously with 28 fractions of radiation. Side effects included peripheral neuropathy and colitis, both of which remain. Within a year of this treatment, it had metastasised to my lungs and I am back on chemo. Very dispiriting and finding it more difficult to remain optimistic the second time around. Not having radiation but on 7th cycle of chemo with at least 5 more to go, when they will start an alternative treatment (not sure what at this point).

  • lynzip
    lynzip Member Posts: 3 Member
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    Sorry I missed your comment, great to see you respond. My comment back to you below today has been cut short. Have repeated it for the most part to Scjayhawk above.

    I am from Qld Australia. I was diagnosed in 2022 with MLA, Stage 1b but high grade (3). I had a total hysterectomy, 6 cycles of chemo, simultaneously with 28 fractions of radiation. Side effects included peripheral neuropathy and colitis, both of which remain. Within a year of this treatment, it had metastasised to my lungs and I am back on chemo. Very dispiriting and finding it more difficult to remain optimistic the second time around. Not having radiation but on 7th cycle of chemo with at least 5 more to go, when they will start an alternative treatment (not sure what at this point). Was feeling somewhat lonely but wonderful to hear from both of you. Did your side effects/symptoms persist or resolve with time?

  • peachie60
    peachie60 Member Posts: 6 Member
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    I was diagnosed in July 2015 with Mesonephric Endometrial Adenocarcinoma and Sarcoma of the Uterus. So rare, my dr had never heard of it. It was a very aggressive tumor that had been misdiagnosed for 6 months by my previous gyne. By the time it was found, it was already the size of a plum! It didnt show on any of the PAP tests, or Internal Ultrasounds (had 3) I went for a 2nd opinion because I started bleeding. They did a biopsy right away and sent it to Cleveland Clinic for a correct diagnosis. I had robotic surgery, complete hysterectomy and very high doses of Brachytherapy with a large cylinder. I looked at the size of the cylinder and was petrified. Mine did hurt, because the cylinder pressed against my rectum area. I refused the chemo also. The dr was very upset with me, but my daughter in law works for MD Anderson in Houston and I talked to her about it. They do not give me regular scans, infact my surgeon retired. The next gyneoncologist left! So I went out on my own and see a gyne yearly. I requested 2 scans on my own because every strange lump or pain I freak out! I also trust God, that has been my strength. August 27, I will be 9 years clear. Counting my Blessings.



  • peachie60
    peachie60 Member Posts: 6 Member
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    Hi everyone,
    Thank you for your responses! Please let me know how you all are doing. Both of my Oncologists have left my area. I resorted to seeing the Head of Gynecology for a yearly checkup. They do not do regular scans on me. I requested 2 scans on my own. So far, it has been clear and will be 9 years this August. The dr that did the surgery told ne it could come back anytime, any place, anywhere. That being said, it really bothers me that they dont do regular checkups!