Want to connect with others who have had pelvic exenteration surgery

@bevmarant Welcome to Mayo Clinic Connect. I do not recall a question like yours in the past and so I posted an explanation from Cleveland Clinic of pelvic exenteration surgery:

-- https://my.clevelandclinic.org/health/treatments/22455-pelvic-exenteration

While we wait for other members of our Gynecological Cancers support group may I ask you a few questions?

When is your surgery scheduled?

Would you feel comfortable sharing the reason for the surgery such as gynecological cancer?

What information have your doctors and nurses provided to you already?

My surgery is scheduled 10/14.
My cancer is a vaginal wall cancer treated with radiation and chemo initially but I now have reoccurring cancer in same location. Surgery is to remove tumor with intent to get cancer free clear margins. Because of the tissue grafting needed to support the pelvic floor I am unable to sit for 6-8 weeks. I can stand and walk but no sitting. My doctors are a distance from my home. Will likely require lying in a car in some way but wondered if anyone else had a good suggestion.

Hi @bevmarant, you might also be interested in this related discussion:
- Anyone had pelvic exenteration surgery for cervical cancer?
https://connect.mayoclinic.org/discussion/pelvic-exenteration/
I'm also tagging @afowler876 to bring her into the discussion.

Not being able to sit for 6-8 weeks sounds challenging for sure. I wonder if the nursing staff might have some helpful suggestions for you as well. I'd also be interested in hearing how others have transitioned from standing to lying down without issue.

Bev, I agree that hearing from others is priceless. In the meantime, what instructions has the surgical team provided?

Thank you Colleen. Yes I’m having surgery at University of Penn in Phila, PA. My cousin is a radiation oncologist there and has helped in navigating doctors for my care. I did view the Mayo Clinic video you provided.. Mobilizing from lying to standing will be done rather quickly. While the surgery is rather extensive my cancer is also effecting my urethra so surgery as such is necessary.
Will stay hopeful to make a connection.

Hi,

I was recently informed that I would need pelvic exenteration surgery by my oncologist at the University of Penn in Philadelphia, PA. I am looking to hear from women who have been through this procedure.

You may possibly be able to get your insurance to cover for a medi-car/low key ambulance type service that could drive you back home in a lying position (i.e. like a gurney) if your physician writes the orders its needed because you can't sit. I've had to help out others who could not mobilize themselves to get to necessary doctors appts and that was how we ended up doing it. Likewise they may even cover it for the followup appts if its only a few. Not sure where you're located but Elite ambulance service is one that I've seen a few states that offers this. Some ambulance / Medicar companies only contract directly with the hospitals and wont do residential pickups/dropoffs. Good luck to you, sending positive thoughts for fast healing.

Thank you. Will look into that as an option. It would make things much easier. The tissue grafting is why I won’t be able to sit and want to protect such.

Hi,
Are you having pelvic exenteration surgery soon or have you had the surgery already. Mine is scheduled for 10/14/24.

Hi,

It hasn't been scheduled yet. I am doing a lot of research on alternatives to this surgery as I am afraid of my quality of life afterward. I hope that your surgery goes well, and I would love to stay in touch.

I would love to stay in touch with you as well. I too am concerned about the quality of my life afterwards. I did speak to one woman who had surgery 5 years ago and is doing well. I am unable to have anymore radiation treatment. I had radiation and chemotherapy a year ago with good results for 1 year. With reoccurring cancer this is the best choice, surgery to get clear margins and then chemotherapy. I would like to get back into remission. I recognize recovery will be difficult. Having been a nurse some of the healthcare I will experience is not unfamiliar and feel like it has helped me to make the decision for surgery. I’m grateful I have some options to keep fight my cancer.