Anyone had pelvic exenteration surgery for cervical cancer?

Hi, Bev. I am hoping by now that you have had your surgery. I had total pelvic exenteration here in Tampa, FL at Moffitt Cancer Inst. on Sept. 28th, 2015. I am thus far cancer-free! My vaginal cancer (which was originally Stage I cervical cancer--long story) recurred twice, and necessitated the PE. Like you, my mass had caused obstruction of urine output. In my case, it had wrapped itself around my left ureter and was partially blocking my rectum. I have now been a "double-bagger" for over nine years. My first year was very tough on me emotionally and physically, as I have also had rheumatoid arthritis since 1989. Know that this surgery does not define you! Please let us know how you're doing. Deb

@tatersinger Thank you for your kind note to @bevmarant. Welcome to the Gynecological Cancer Support Group. I want to offer my congratulations on living a cancer free life for 10 years. This provides hope for us all. Thank you also for sharing that the changes you experienced as a result of the surgery were initially very difficult for you but you've adjusted over the years. This is very encouraging.

Absolutely! You have no idea how strong you can be, until you have no choice but to be strong. I am more than happy to chat with anyone who wants or needs to discuss Pelvic Exenteration surgery or ostomies. I have a lot of experience to offer.

Hi, Bev. I am hoping by now that you have had your surgery. I had total pelvic exenteration here in Tampa, FL at Moffitt Cancer Inst. on Sept. 28th, 2015. I am thus far cancer-free! My vaginal cancer (which was originally Stage I cervical cancer--long story) recurred twice, and necessitated the PE. Like you, my mass had caused obstruction of urine output. In my case, it had wrapped itself around my left ureter and was partially blocking my rectum. I have now been a "double-bagger" for over nine years. My first year was very tough on me emotionally and physically, as I have also had rheumatoid arthritis since 1989. Know that this surgery does not define you! Please let us know how you're doing. Deb

I'm continuing with the immunotherapy drug, Jemperli; it is a 30 min infusion once every 3 weeks, I've had 3 so far and doing well. End of jan if all still is good I will switch to once every 6 weeks.

Yes, yesterday I had a telemedicine appointment with a doctor I was so impressed with (at Mayo, Jacksonville, as I live in FL). He was extremely knowledgeable about women with recurrent endometrial cancer, especially like mine, MMR deficient. He said I was on the right track with my current oncologist, and my immunotherapy treatment, which is why I wanted another opinion, just to make sure. I feel very good going forward. His name for any interested is Gerardo Colon-Otero, MD.

Hi riverland889, can I ask you what is your grade and stage for EC? and how long after your hesterecomy for the recurrence happened? I have grade 1 stage 1A, with MSH6 deletion lynch symdrome with germline deletion. I had no any adjuvent treatment. I am so worry about the recurrence since I am dMMR. Do you have chemo plus immunotherapy or immunotherapy alone? Thanks for your advice.

My biopsy says FIGO grade 2 with 6% myometrial invasion. My Dr notes say Stage 1A grade 2. I am also dMMR.
My hysterectomy came about due to vaginal bleeding post menopause, which is performed August 2020. I had no other treatment after the hysterectomy in March 2023 I developed a discharge which was clear andwatery. That’s when I was diagnosed with the recurrence. I had low dose chemotherapy cisplatin once a week for five weeks, at the same time I received external radiation five days a week for five weeks. After the external radiation, I had five treatments of brachytherap.
My scans at the time showed quite a decrease in size and the doctors thought that what was showing up was scar tissue and inflammation from the radiation. I kept getting scans periodically and then in November 2024 it popped up again and because I could no longer get radiation, I have been on immunotherapysince November 2024 and I appear to be doing fine. My next scan will be in July. I also had a second opinion at Memorial Sloan Kettering in December 20 24 and that doctor agreed with my treatments here in Florida. I hope this helps.

Thank you so much for your reply. Does recurrence only happened in the cuff? It is good to hear that your immunotherapy works for you, multiple clinical trials already shows immunotherapy works for dMMR patients, even works for pMMR patients.

Mine is Grade 1, Stage 1A, 8% myometrial invasion, dMMR. No treatment so far after hesterecomy, which was performed 4 months ago. I have no bleeding at all, only found through ultrasound and biopsy. Thanks!

I don't know if recurrence only happens in the cuff; that's where mine was found. Does your doctor recommend any follow up treatment? My doctor told me that if they had the Jemperli when I had my hysterectomy, he would have put me on it after the surgery. Just an FYI.