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If, after initial treatment, your cancer comes back in the pelvic area, it may be possible to have an operation called a pelvic exenteration. This is usually only offered after chemoradiotherapy has been given. Pelvic exenteration is a major operation that involves removing all of the structures in the pelvic area and can include the cervix, uterus (womb), vagina, ovaries, bladder and the lower end of the large bowel (rectum). If all of these structures are removed it is called a total exenteration. If the bladder is removed but the bowel and rectum are left it is called an anterior exenteration and if the bladder is left and the bowels and rectum are removed it is called a posterior exenteration. Pelvic exenteration surgery is only suitable for a small number of women and you will need to have various investigations and scans to see if it is possible for you.
The operation can vary depending on the extent of the cancer and which organs are affected. Part of the operation involves creating one or two openings (stomas) on the abdominal wall. These are needed because the operation can involve removing the bladder, the bowel and rectum, or both. This means you will need either one or two stoma bags: one to collect your bowel motions and/or one for urine. These stomas are known as a colostomy (bowel motions) and a urostomy (urine). In some centres, instead of having a urostomy they may offer you a procedure called a continent urinary diversion. This is where a pouch or reservoir is made instead of an opening attached to a bag. This means you yourself have control of when you empty your new bladder. This procedure is not offered at all cancer centres and your gynae-oncologist will discuss this option with you if it is available.
Before pelvic exenteration you will see a nurse who specialises in the care of people with stomas (a stoma nurse). The nurse will explain all about stomas and how to look after them and can answer any questions you may have. The stoma nurse will also visit you after the operation to help you.
The operation may also involve making (reconstructing) a new vagina. Your medical team will be able to discuss this with you in detail.
A pelvic exenteration is a big operation, and many women find that recovery can be difficult, both physically and emotionally. It is important that you understand exactly how the operation may affect you so it is a good idea to talk to your surgeon or specialist nurse. They can support you in deciding whether pelvic exenteration is right for you.
You may find it helpful to join our online Forum community. There are other women who have gone through pelvic exenteration who are willing to share their stories and help support you through your surgery and recovery. There is also a closed forum there specifically for women with who are living with advanced cervical cancer.
If you are being offered or have had pelvic exenteration surgery and you are looking to connect with other women who have been through this, please contact us at [email protected] and we will do our best to put you in touch with someone.
Elaine’s describes her experience of pelvic exenteration surgery:
‘I was referred and told I was a good candidate for having extremely radical and rare surgery called pelvic exenteration surgery.’