Mesonephric adenocarcinoma...anyone?

@kirlizee Thank you for sharing how you live your life each day. Your life is certainly active. I retired from my full-time career, and now work part-time. Like you I love the flexibility especially since I can set my own schedule. Oh, yes - the parade of doctors and many appointments on your agenda. I love your take on this - it's the doctors who are constantly thinking about death and you continue to live your same life. ☺️

Now that my husband and I are both retired and on Medicare, managing our healthcare is like having a part-time job. (He has Alzheimer’s, so I have to do everything for him.) Busywork around the house and socializing gives me some escape. I also play in a handbell choir which is a nice diversion.

@lathomasmd I am sorry you are both having to live with Alzheimer’s…the most cruel disease. What’s your favorite handbell song to play? I was middle C through D flat in my 8th grade group 😌

Nice to hear from another handbeller! The Christmas hymns are my favorite (even though I’m not religious).

@lathomasmd My mother-in-law, of blessed memory, played in a handbell choir. We did not live in the same town so I never got to hear the choir. I know how much she loved it and like you she very mch enjoyed the Christmas songs.

Hi Kirlizee.
Just found this group. I too have mesonephric cancer of the cervix. Completed chemo with external rads followed by 3 brachytherapy finished in Jan 2025. Just had follow up scans showing recurrence again on external cervix. They had said my options are pelvic extenteration surgery which I am very scared about. Did you have this? Or anyone else in this group? She had mentioned chemo with immunotherapy as well if it has spread beyond the pelvic area. Any advice or insights you have would be appreciated.

@mariannie2, welcome. I'm tagging @kirlizee so that she sees your question.

What a blow to hear that the scans show recurrence. Here is a related discussion you might be interested in.
- Anyone had pelvic exenteration surgery for cervical cancer?https://connect.mayoclinic.org/discussion/pelvic-exenteration/

What further testing will you have to determine whether it is local recurrence or if it has spread further? ((sending a virtual hug))

@colleenyoung
Thank you for your reply. I had a cervical biopsy but will also be having a PET scan this coming week and then an ultrasound guided biopsy. I have been doing a lot of reading and I am feeling overwhelmed. The prognosis for the surgery doesn’t sound great and other therapies seem to just manage the disease.

@mariannie2 my primary treatment was hysterectomy and then chemo/radiation/brachy. I have not had any pelvic recurrence, it went to my lungs which is typical. I am surprised you didn't have surgery with an MA diagnosis, although maybe your staging was too high?

@mariannie2 you'll find several people in Reddit cervical cancer sub who have had extenteration. But yes, my doc had told me this isn't going to go away, we are just managing it as long as we can. If you are able to get genetic testing that's a potentially valuable point of knowledge for treatment options.

But generally we just had lousy luck to get this type that is virtually non-existent.