• Reference Number: HEY-601/2018
• Departments: Gynaecology, Oncology (Cancer Services)
• Last Updated: 31 May 2018

Introduction

This leaflet has been produced to give you general information about your procedure.  Most of your questions should be answered by this leaflet.  It is not intended to replace the discussion between you and your doctor, but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.

If you have recently been diagnosed with cancer of the cervix (neck of womb), it is perfectly normal to experience a wide range of emotions. For some women, this may be a frightening and unsettling time.

It will help you to cope with your feelings if you talk with someone who specialises in dealing with this condition, someone friendly who will listen and answer your questions. We have included a list of useful contact numbers within this patient information leaflet.

What is cancer of the cervix (neck of womb)?

Cancer of the cervix (also known as cervical cancer) begins in the lining of the cervix. Cervical cancers do not form suddenly and normal cervical cells gradually develop pre-cancerous changes that may turn into cancer over a long period of time.

Why do I need a radical hysterectomy?

Women with cancer of the cervix (neck of the womb) may be offered a radical hysterectomy. This is different from a ‘simple’ hysterectomy because not only are the cervix, uterus (womb) and fallopian tubes removed, but also the top two to three centimetres of the vagina and the tissues around the cervix. The pelvic lymph glands will also be removed at this time because the cancer can spread to these glands first. The doctor will discuss whether it is necessary to remove your ovaries at the same time.

The aim of the operation is to remove all of the cancer. If there is any evidence that the cancer has spread, you may be offered further treatment, such as radiotherapy or chemotherapy. This will be discussed with you when all of your results are available.

The doctors and nurses will discuss the treatment that has been recommended for you and will explain how it will affect you. Once all your questions and concerns are answered to your satisfaction, we will then ask you to sign a consent form giving your permission for the operation to proceed.

Are there any alternatives to this operation?

There are alternatives to surgery but these vary from patient to patient. The medical team will discuss the options available to you, dependent on the stage of your disease. For some women the options are:

• Radiotherapy is as effective as surgery in some women with cervical cancer. This tends to be offered to women with a larger tumour or women who are not medically fit to have major surgery.
• Chemotherapy is often given in combination with the radiotherapy.

What if I do not wish to have treatment?

Your wishes about treatment will be respected at all times by your medical team. If you choose not to have treatment, your cancer will progress and your health is likely to deteriorate.

At this time you may wish for us to transfer your care to the Palliative Care Team, who will discuss with you what will happen next and help you to manage your symptoms and support you.

Can there be any complications or risks?

All surgical procedures carry a small chance of complications. Every care will be taken to minimise the risks.

The most common include:

• Infection – The risk of post operative infections is reduced by giving “preventative” antibiotics around the time of the surgery. Infection may occur in the vulval area, pelvis, bladder, chest or in the incision site. Infections are usually easily treated with antibiotics. Occasionally an abscess may form which may require surgical drainage under anaesthetic.
• Bleeding – This may occur during the operation or rarely afterwards and may require a blood transfusion. Occasionally if blood collects in the wounds it is necessary to drain the area requiring surgery under anaesthetic.
• Deep vein thrombosis and pulmonary embolism – In association with having a vulvectomy it is possible for clots of blood to form in the deep veins of the legs and pelvis. If this does occur a deep vein thrombosis will normally cause pain and swelling in the legs and can be treated relatively simply with drugs. However in rare cases it is possible for a clot to break away and be deposited in the lungs or heart and if this occurs it is a serious situation. The risk of developing a DVT is less than 1 in a 100 as many precautions are taken to help prevent and minimise the risks. Moving around as soon as possible after your operation can help to prevent this. We will give you special surgical stockings (known as ‘TEDS’) to wear whilst you are in hospital and injections to thin the blood.
• Bowel injuries – Your intestines share the same cavity as your womb and ovaries, they can very occasionally be damaged during a hysterectomy. This risk increases if there is any scar tissue from previous operations. Whilst this problem can normally be easily fixed, it is very occasionally necessary to bring the intestines out into a bag (colostomy).
• Injuries to the urinary system – The bladder and the tubes connected to your kidneys lie very close to the womb and can be damaged during a hysterectomy. This is a potentially serious complication that can require further surgery.

If you have any ongoing concerns or questions about the risk of complications, please do not hesitate to ask a member of the medical team.

Are there any long term complications?

There may be long-term complications and these can include:

• Numbness around the wound site – The skin around the wound is usually numb for several months until the small nerves damaged by the incision grow back. Sometimes the numbness may affect the tops of the legs or the inside of the thighs. This nearly always improves within 6 – 12 months.
• Lymphoedema – There is a small risk of swelling called lymphoedema, of the legs or lower abdomen. If this occurs please tell your GP or clinical nurse specialist. Normally, lymphatic fluid circulates throughout the body, draining through the lymph glands. The pelvic lymph glands are removed during the operation to prevent the spread of cancer cells. The lymphatic drainage system may become blocked, resulting in a build up of fluid in one or both legs or in the genital area. Preventative measures can be taken to reduce the risk of it happening and you will be given information about this. You can discuss this further with any of the nurses or doctors.
• Emptying your bladder – Some women have problems emptying the bladder after surgery. This usually settles with time but a small number will have long term problems. Occasionally it is necessary to show you how to put a catheter tube into the bladder to make sure it is emptying completely. This does not mean wearing a catheter permanently and is known as intermittent self catheterisation. It affects only about 2 in 50 of women having a radical hysterectomy.

Will this operation affect my fertility?

Your womb is being removed so you will not be able to carry a pregnancy, however other options regarding fertility may be available please ask.

Will my ovaries continue to produce eggs?

If you still have your ovaries after the operation they will continue to produce eggs. However because we have removed your uterus (womb) you will not menstruate (have periods) each month and so the eggs will be absorbed harmlessly by your body.

The operation

What is removed during my operation?

When we perform a hysterectomy the following areas are removed:

• Cervix (neck of the womb) and surrounding tissue.
• Uterus (womb).
• Fallopian tubes.
• Top 2-3 cm of the vagina.
• Lymph glands.
• In some cases, the ovaries.

Will I have a scar?

The surgeon will either make an incision (cut) across your tummy, above your pubic hair or a vertical incision down your tummy. The wound will be closed together using either stitches or staples.

There will be an internal scar at the top of your vagina where your cervix has been removed. This will heal over time.

How do I prepare for my operation?

Please read the information leaflet as well as the Gynaecology Oncology Enhanced Recovery information for patients leaflet. Share the information it contains with your partner and family (if you wish) so that they can be of help and support. There may be information they need to know, especially if they are taking care of you following this procedure.

What will happen?

For more information on afterwards read the Gynaecology Oncology Enhanced Recovery information for patients leaflet.

What happens afterwards?

For more information on afterwards read the Gynaecology Oncology Enhanced Recovery information for patients leaflet.

When can I return to work?

This will depend upon the type of work you do, how well you are recovering and how you feel physically and emotionally. It also depends on whether you need any further treatment, such as radiotherapy, after your operation.

Most women need approximately two to three months away from work to recover fully before returning to work or their usual routine. However this will depend upon your recovery and you can discuss it further with your consultant, gynaecology clinical nurse specialist or doctor.

Remember – the return to normal life takes time, is a gradual process and involves a period of readjustment and will be individual to you.

What about exercise?

Avoid all aerobic exercise, jogging and swimming until advised, to allow the muscles cut during your operation to heal. The medical staff/Gynaecological Clinical Nurse Specialist will be happy to give advice on your individual needs.

When can I have sex?

After a radical hysterectomy for cancer, you may not feel physically or emotionally ready to start having sex again for a while. We normally advise women not to have sexual intercourse for six weeks following surgery to allow time to heal.

During this time it may feel important for you and your partner to maintain intimacy, despite refraining from sexual intercourse. However, some couples are both physically and emotionally ready to resume having sex much sooner and this can feel like a positive step. If you have any individual worries or concerns, please discuss them with the Gynaecological Clinical Nurse Specialist.

It can be a worrying time for your partner. They should be encouraged to be involved in discussions about the operation and how it is likely to affect your relationship afterwards.

If you do not have a partner at the moment you may have concerns either now or in the future about starting a relationship after having a radical hysterectomy.

Please do not hesitate to contact the Gynaecological Clinical Nurse Specialist if you have any queries or concerns about your sexuality, change in body image or how your surgery may affect your sexual relationship.

Follow up treatments and appointments

Will I need to visit the hospital again after my operation?

You will need to visit the hospital again and it is very important that you attend any further appointments arranged.

The histology (tissue analysis) results from your surgery will not be available before you are discharged home. However an early appointment for an outpatient clinic at your local hospital will be made to discuss the results and any further treatment options if necessary.

You will need to attend for regular follow-up appointments once your treatment is complete. These appointments will be arranged for every three to six months for the first two years. After this will depend on your individual needs. At these appointments you will be seen by a member of the medical team.

Will I need further treatment?

The majority of women will not require further treatment, however further treatment (radiotherapy / chemotherapy) may be required in a small number of women.

Useful contacts and support agencies

Macmillan Cancer Support

Specialist advice and support through Macmillan nurses and doctors and financial grants for people with cancer and their families. For answers, support or just a chat call 0808 808 00 00 Monday – Friday, 9am – 8pm. www.macmillan.org.uk.

The Daisy Network

PO Box 71432

London SW6 9HJ

General enquiries:  info@daisynetwork.org.uk

They provide a support network for women who experienced a premature menopause.

The Lymphoedema Support Network

St. Luke’s Crypt, Sydney Street, London, SW3 6NH.
020 7351 4480 Monday to Friday 9.30 till 4.30pm www.lymphoedema.org.

Jo’s Cervical Cancer Trust

 A charity dedicated to women, their families and friends affected by pre-cancer and cancer of the cervix

Write to us Jo’s Cervical Cancer Trust, CAN Mezzanine, 49 – 51 East Road, London, N1 6AH

Call us 020 7250 8311

Email us info@jostrust.org.uk

www.jotrust.co.uk

Should you require further advice:

Please contact the Gynaecology Clinical Nurse Specialists who will be happy to speak to you at any time. You may find it helpful to write down any questions you may have, so that you do not forget them when you attend your appointment.

Castle Hill Hospital

Gynaecology Clinical Nurse Specialist – (01482) 624033.
If they are not there, an answer phone is available.

If you need to speak to someone urgently, the staff on Ward 14 at Castle Hill Hospital will be happy to help. Ward 14, Castle Hill Hospital – (01482) 623014.

Northern Lincolnshire and Goole Hospitals NHS Trust

Gynaecology Clinical Nurse Specialist – (01724) 282282.
Page through Switch Board or ask for extension 5904.

Scarborough Hospital

Gynaecology Clinical Nurse Specialist
Page through Switch Board – (01723) 368111.
Office – (01723) 385290.
Oncology/Haematology Department, Entrance 1, Castle Hill Hospital – (01482) 461060.

Information on Gynaecology Services at Hull University Teaching Hospitals NHS Trust NHS Trust: https://www.hey.nhs.uk/gynaecology

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.