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Having a pelvic exenteration

 

A pelvic exenteration is a big surgery, so you may meet a lot of new healthcare professionals and have a number of appointments beforehand. This is to check you are fit and well enough to have it.

Read our blog for more tips before treatment > 

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In this section:

Preparing for pelvic exenteration

You will need to think about how you will manage at home after the surgery. You will probably need extra help and support for at least a few weeks.  You may live with someone who can support you, but if not you may need to arrange for care. Your healthcare team can talk this through with you. 

Before surgery, you may see an occupational therapist. They will:

  • check that you will be able to adapt to your new day-to-day life
  • assess whether anything in your home needs to be modified to help you cope. 

If your healthcare team haven’t arranged for you to see an occupational therapist, you can ask them to set up an appointment.

Read about preparing for treatment > 

Who you might meet

 Healthcare professionals you may meet include a:

  • consultant oncologist or surgeon – a doctor who specialises in treating cancer with surgery
  • CNS – your main point of contact who can offer emotional support
  • plastic surgeon – a doctor who specialises in reconstructing parts of the body
  • urologist – an expert who specialises in conditions affecting the urinary tract
  • stoma nurse – an expert nurse who will help prepare you for having a colostomy or ileal conduit or urinary diversion
  • counsellor – an expert in providing emotional and psychological support
  • anaesthetist – an expert in giving anaesthesia for surgeries and other procedures
  • bowel surgeon (colorectal surgeon) – a doctor who specialises in treating conditions affecting the bowel.

Pre-operative assessment for pelvic exenteration

You need to have tests to check you are fit and well enough to have the surgery. This is sometimes called a pre-operative assessment. 

This assessment may include  :

  • taking your complete medical history
  • physical examination – if needed, this may be under general anaesthetic 
  • biopsies of any abnormal areas of the body, such as a swollen lymph node
  • assessing any symptoms you have, such as pain 
  • a chest x-ray
  • a CT scan
  • electrocardiogram (ECG) – to check how healthy your heart is
  • blood tests – to check how many blood cells and platelets you have, as well as if your kidneys are working properly.

If you are having a posterior exenteration or LEER, you may also have other tests:

  • Cystoscopy – A flexible tube with a light and camera on the end is put into the tube that you wee from (urethra). It allows your healthcare professional to see and assess your bladder.
  • Sigmoidoscopy – A flexible tube with a light and camera on the end is put into your rectum (back passage). It allows your healthcare professional to see and assess part of your bowel.

Your healthcare team will also need to make sure you understand the surgery and impact it will probably have on your life. It is important that you spend quite a bit of time with them while they explain this. You should also use this time to ask any questions you have. 

If you think it would be helpful, ask whether you can be referred for counselling before the surgery. This will give you expert support to process your emotions and options, and think about what comes next.

Read about cervical cancer and mental health >

Self-isolating

You will be asked to self-isolate for about 2 weeks before the surgery. This is to make sure you stay well enough to have a pelvic exenteration. At the moment, it is also important because of the COVID-19 pandemic. Your healthcare team will explain exactly why and how you need to self-isolate for.

Just before the surgery

You will normally go into hospital the day before your surgery and be admitted to the ward. The ward nurse will help you get ready for the surgery. This may include preparing your bowels for surgery by taking laxatives and following a special diet a few days before surgery. You might also have a test to check for COVID-19.

The surgery is done under general anaesthetic, which means you won’t be able to eat for about 6 hours before the surgery. You may be able to drink water up to 2 hours before the surgery. 

A general anaesthetic means you will be asleep for the surgery and won’t feel anything. Your healthcare team will check you are fit and well enough to have it.

An anaesthetist will give you 2 injections – the first to make you fall asleep and the second to make your body numb. Once you’re asleep, you will be wheeled into the operating room. 

Some people feel worried about having a general anaesthetic. If you feel this way, you could speak to your healthcare team and anaesthetist before, to find more about what will happen and talk through any concerns. 

You may also have an injection in your back. This can stop you feeling pain in part of your body (epidural). This can help with extra pain relief once you wake up after the surgery.

The anaesthetist will ask you to count to 10 and before you reach 7, you will drift off to sleep. When you wake up, you will be in the recovery room or ward.

During pelvic exenteration

The surgery may take between 8 to 10 hours. Sometimes it can be longer.  

If the cervical cancer has spread outside of the pelvis

Before the surgeons remove the organs in your pelvis, they may remove small pieces of tissue (biopsies). These are sent to a pathologist straight away, who tests them to check whether the cancer has spread outside of your pelvis. 

If the cancer has spread too far outside the pelvis, the surgeons will stop the surgery. It can be distressing to find this out, especially after you have been through preparation for surgery. If this happens, your healthcare team will think about other ways to control your cancer and any symptoms. 

Read about Avastin > 

If the cervical cancer is contained within the pelvis

If the surgery can continue as planned, the surgeons remove the organs together with the cancer. 

Depending on the type of pelvic exenteration you have had, they may also:

  • create a way for you to wee (urostomy)
  • create a way for you to poo (colostomy)
  • do a vaginal reconstruction if part or all of your vagina has been removed.

After pelvic exenteration

After a pelvic exenteration, you will be in an intensive care for 2 to 3 days or sometimes longer. Afterwards, you will be moved to a specialist ward. You will probably have to stay in hospital for 2 to 3 weeks. 

When you wake up you may have:

  • dressings on your wounds
  • drains from your wounds – to drain extra fluid
  • drips and pumps in your back or arm – this will give you pain medication that you can control
  • colostomy bag – to collect poo
  • urostomy bag – to collect wee    

You may have a reconstructed vagina or tissue and skin to cover where the vagina was. This means you may no longer have a vagina. Your healthcare team will have helped you prepare for how you might feel about this before surgery, and you should be able to get more support afterwards.

In the early days after surgery, you will probably feel very tired. You will be closely monitored and looked after by the nursing staff.

Recovering after pelvic exenteration

Recovery from a pelvic exenteration will be different for everyone and can depend on the type of surgery you have had. You may begin to feel better a few weeks after surgery or it may take months – sometimes a full year – to completely recover. It can be as much about emotional recovery as physical recovery.

Read about recovering from treatment >

Your healthcare team will give you more information about rest and recovery after pelvic exenteration. They will probably encourage you to sit up, move from the bed to a chair, and start moving around as soon as you can. This may start with a short walk around the ward. 

Getting moving can help you recover more quickly. A physiotherapist should help you start moving and may show you some gentle exercises that can help.

It can take a little while for your digestive system to start working again. You usually won’t be able to eat for 1 or 2 days after the surgery. You can start gradually drinking sips of water. Once you can drink more, your drips may be taken away. Drinking fluids and moving around can help get your bowels working.

Pelvic exenteration changes your body in a major way, which can have a big impact on your emotional wellbeing. For a short while after the surgery, hormonal changes and the anaesthetic can also affect your mood and may make you weepy. 

As you recover, you may still feel low and have up and down days as you come to terms with changes to your body. 

Try and talk to your healthcare team about how you are feeling, so they can give you support. They may be able to arrange for a counsellor to see you on the ward or you could have appointments once you leave hospital. 

Read about cervical cancer and mental health >

While you are in hospital, your stoma nurse will teach you about caring for your stoma and changing the colostomy or urostomy bags. They will also help you get the supplies you will need when you go home. 

Read about stomas on the Macmillan Cancer Support website >

You will usually stay in hospital for 2 to 3 weeks. Once you’re at home, it can take 2 to 3 months or even longer to fully recover and get your strength back.  

You will still have medical care at home, such as:  

  • injections to thin your blood and reduce the risk of blood clots
  • pain medication.

You will have the contact number of your CNS, the hospital and possibly your stoma nurse. Your healthcare team will give you advice about symptoms to look out for, so you can contact them straight away if there are any problems.

Your recovery will be gradual, which may be frustrating. You will need to rest a lot, as well as building up your activity as time goes on. You should avoid housework and strenuous activity like lifting shopping bags for at least 6 weeks after your surgery. Your healthcare team will give you advice specific about what you can and can’t do after the surgery. 

You can talk with your healthcare team about going back to work, driving and doing more exercise.

Getting support before or after pelvic exenteration

We know that pelvic exenteration for advanced cervical cancer is life-changing. It changes your body, your relationship with your body, and can have a huge impact on your emotional wellbeing. Your healthcare team are there to support you with any questions or worries you have. 

Remember that we are here for you too, whether you are waiting to have pelvic exenteration, are in recovery, or are years past it. Sometimes connecting with others who have gone through a similar experience can be helpful. Our online Forum lets our community give and get support. We have a private forum for those with advanced cervical cancer. If you would like to join, we ask for a few details – this is kept private, but means we can make sure this part of the forum is a safe space. You can read through the messages or post your own – whichever feels most comfortable.

If you would like to connect with others who have had a pelvic exenteration, contact us at support@jostrust.org.uk We will do our best to put you in touch with someone.

Join our Forum > 

If you ever need to get in touch with someone quickly, our trained volunteers can listen and help you understand what’s going on. You can call our free Helpline on 0808 802 8000. 

Check our Helpline opening hours > 

If you have general questions about pelvic exenteration, our panel of medical experts may be able to help. They can’t give you answers about your individual situation or health – it’s best to speak with your GP or healthcare team for that.

Use our Ask the Expert service > 

Useful organisations

Colostomy UK

A UK charity that offers information and support on living with and looking after a stoma. 

Helpline: 0800 328 4257

www.colostomyuk.org

Urostomy Association

Offers information and support to people who have, or who will have, a urostomy.

www.urostomyassociation.org.uk

Thank you to all the experts who checked the accuracy of this information, and the volunteers who shared their personal experience to help us develop it.

References

  • British Gynaecological Cancer Society (2020). Cervical Cancer Guidelines: Recommendations for Practice. Web: www.bgcs.org.uk/wp-content/uploads/2020/05/FINAL-Cx-Ca-Version-for-submission.pdf. Accessed October 2020.
  • British Gynaecological Cancer Society (2019). Position Statement on Surgery in Early Stage Cervical Cancer – Lay Summary. Web: www.bgcs.org.uk/wp-content/uploads/2019/07/NCRAS-mas-v-open-radical-hysterectomy-BGCS-lay-statement-May-2019-1.pdf. Accessed October 2020.
  • Li, L. et al (2018). Pelvic Exenteration for Recurrent and Persistent Cervical Cancer. Chinese Medicine Journal (Engl). 131;13. pp.1541-1548. 
  • Dessole, M. et al (2018). Quality of Life in Women After Pelvic Exenteration for Gynecological Malignancies: A Multicentric Study. Internal Journal of Gynecological Cancer. 28;2. pp.267-273. 
  • Westin, S. et al (2014). Overall survival after pelvic exenteration for gynecologic malignancy. Gynecologic oncology, 134;3, pp.546–551. 

We write our information based on literature searches and expert review. For more information about the references we used, please contact info@jostrust.org.uk

Read more about how we research and write our information >

Pelvic exenteration follow-up >

Find out about follow-up appointments and tests for pelvic exenteration surgery.

Date last updated: 
04 Nov 2020
Date due for review: 
01 Nov 2023
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