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Pelvic exenteration

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UnaM
Pelvic exenteration

 

 

Hello,

My best friend has recently been told that she will have to have a pelvic exentertion, with possibly all five organs removed.  She desperately needs to find someone to talk to who has been through this so she can decide whether to go ahead or not.  

Is there anybody on here who has been through this who would be willing to speak to her to help her process it, and find out more about life after the surgery?

Many thanks, and in hope,

Una x

Jazza
Jazza's picture

Hi

This is outside my experience but your friend should be able to find people in a similar situation on  the 'living with advanced cervical cancer' category of this forum; only people with advanced cancer can access that particular category.  But it's worth checking back here because there are one or two ladies who have had pelvic exenteration who visit all categories of the forum and one of them may drop by here soon.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Petesdragon
Petesdragon's picture

I am not sure what you mean by all five organs removed. However, I have had TPE and am extremely well and healthy 2.5 years down the line. Do point your friend towards the advanced section. The are several of us in there and we are.a really supportive bunch.

Karen x

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease.