Total penectomy and perineal urethrostomy

This means that the whole of the penis must be removed in order to remove the cancer and prevent the risk of it spreading.

In order to maintain urine flow, the urethra is repositioned underneath in the perineal area (behind the scrotum) to form a urinary drainage system which is called a perineal urethrostomy. This will enable normal sensation to pass urine, giving full control of the bladder. However, you will need to sit down to void urine.

This operation is undertaken for confirmed cancer in the penis with the overall aim of removing all cancer from this area. Surgery is the main treatment to remove the cancer and prevent it spreading to other organs.

Unfortunately, it is not believed that penile preserving surgery would be in your best interests, hence why removal of the whole penis has been recommended.

There are some risks in having this treatment, which you should consider before consenting for the operation. These potential complications are rare. You should discuss these with your doctor when you visit the hospital.

All operations carry risks, such as bleeding, infection and DVT, and all of these risks will be explained to you in detail before you sign the consent form.

The main consequence of the surgery is the shortening of the urethra water pipe and repositioning it behind the scrotal area, which will mean that when there is the urge to pass urine, you will have to sit down on the toilet.

There are a number of issues that affect the chances of suffering complications, including: age, weight, lifestyle issues and your general state of health. Your anaesthetist and/or your surgeon can give further details. The information below on risks is provided by the Royal College of Anaesthetists:

Very common (1 in 10) and common (1 in 100) side effects

• feeling sick and vomiting after surgery
• sore throat
• dizziness, blurred vision
• headache
• itching
• aches, pains and backache
• pain during injection of drugs
• bruising and soreness
• confusion or memory loss.

Uncommon side effects and complications (1 in 1,000)

• chest infection
• bladder problems
• muscle pains
• slow breathing (depressed respiration)
• damage to teeth, lips or tongue
• an existing medical condition getting worse
• awareness (becoming conscious during your operation).

Rare (1 in 10,000) or very rare (1 in 100,000 or less) complications

• damage to the eyes
• serious allergy to drugs
• nerve damage
• death
• equipment failure.

Deaths caused by anaesthesia are very rare, and are usually caused by a combination of four or five complications together. There are about five deaths for every million anaesthetics in the UK.

This is not something we would recommend. Surgery is the most appropriate treatment with the best outcome with regards to managing your cancer and to stop the spread of cancer to other parts of the body. If you choose not to undergo surgery and refuse treatment, the cancer will increase in size.

You may also have difficulty passing urine and the wounds may ‘fungate’, become infected and malodorous. If the tumour increases in size, or if the cancer has spread, more radical treatment may be required or it may become untreatable.

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It can mean the use of one drug or several drugs used together. However, it is not commonly used in the initial treatment of penile cancer.

Pre-malignant disease on the foreskin or end of the penis may be treated with chemotherapy cream. This cream only destroys the cancer cells near the surface of the skin, so it is not used to treat deeper cancers.

Chemotherapy may also be given in tablet form, or by injection into a vein for more advanced cancer. It may be given in conjunction with surgery or radiotherapy (or both).

Side effects of chemotherapy

Side effects are more severe and more common with chemotherapy given by injection or into a vein. Many of these side effects can be controlled with drugs and almost all are only short-term and will gradually disappear once the treatment has stopped.

Different chemotherapy drugs cause different side effects. Everyone is different and will react to chemotherapy treatment in a different way. Some people may have very few side effects while others will suffer many.

If topical chemotherapy cream is prescribed, the skin may become sore, red and inflamed. Other creams and painkillers may be prescribed to reduce any pain and inflammation. These side effects should wear off within a couple of weeks after stopping treatment.

If having chemotherapy as an injection or into a vein, the main areas of your body that may be affected are those where normal cells rapidly divide and grow, such as the lining of your mouth, the digestive system, your skin, hair and bone marrow (the spongy material that fills the bones and produces new blood cells).

Common side effects of chemotherapy may include:

• lowered resistance to infection
• bruising or bleeding – the production of platelets which make blood clot can drop, causing bruising or bleeding
• anaemia
• nausea and vomiting – anti-sickness drugs can help this
• sore mouth – may cause small ulcers
• poor appetite
• hair loss – hair should grow back within three to six months of finishing treatment.

Your doctor or nurse specialist will be able to tell you what side effects may be caused by your chemotherapy treatment. Although the side effects of chemotherapy can be unpleasant, they need to be weighed against the benefits of the treatment.

It is important to tell your doctor or chemotherapy nurse if the treatment is making you feel unwell. You may be able to have medicines to help you, or adjustments can be made to your treatment to lessen any side effects.

Prior to your surgery, you will attend an appointment at pre-assessment to assess your fitness for surgery. Here you will be advised of any medications that may need to be omitted prior to, or on the day of your surgery. You will be expected to stop eating from midnight before the day of your operation. You may drink water until 6am unless advised otherwise.

You will be admitted via the surgical admissions lounge on the day of your surgery. Here, you will see your consultant who will ask you to give your consent for your surgery. You may wish to bring a book or newspaper to read whilst waiting for your appointments. You will need to bring clothes and toiletries for your inpatient stay which is usually three nights.

We want to involve you in all the decisions about your care and treatment. If you decide to go ahead with treatment, by law we must ask you to sign a consent form. This confirms that you agree to have the procedure and understand what it involves.

Staff will explain all the risks, benefits and alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your proposed treatment, please don’t hesitate to speak with a senior member of staff again.

The surgery is performed under general or spinal anaesthetic. The whole of the penis is removed with full closure to the pubic area. The urethra is reshaped underneath in the perineal area (behind the scrotum) to form a special urinary drainage system (perineal urethrostomy) where a catheter (narrow tube) will be placed to drain the urine for 10–12 days in order for the area to heal.

A dressing will be secured to the wound site and this will be changed before your discharge.

You will return to the ward with a urethral catheter in place and a wound dressing. This will be well secured to make sure it stays in place. The dressing will normally be removed two to three days before discharge and all sutures will be dissolvable.

Sometimes excess blood may gather at the operation site and a small drain may be inserted to allow unwanted substances to drain naturally for healing to take place. This drain will usually be removed after 24 hours. The urethral catheter is a narrow tube that goes in the repositioned urethra to drain out the urine. This will stay in place for 10–12 days and will be removed in clinic by your nurse specialist.

There may be some swelling and bruising to the perineum area. However, this will improve within the healing time. Pain relief will be given regularly and you will also be discharged with appropriate medication.

Often after a general anaesthetic the bowel will remain sluggish. Inform the surgical team if you are having problems opening your bowel and appropriate medication will be prescribed. You will be advised to wear your anti-embolism stockings, which are designed to help your circulation.

You will also be prescribed anticoagulation injections which will ‘thin’ your blood and prevent blood clots. You will usually remain in hospital for 72 hours. This will depend on your surgeon’s instruction.

The ward nurses will arrange for the district nurses to arrange visits to ensure the wound site remains clean and healthy. The perineal urethrostomy area needs to be kept clean and if there is any visible slough (exudate), alginate will need to be applied to absorb and promote healing. The healing process is normally four to six weeks.

Therefore, you will need to avoid any strenuous activity, for example lifting, gardening and shopping.

Bathing and showering

You will be able to shower, however you must not have a bath until advised after your clinic for removal of your urethral catheter. From day 15 you can have a five-minute ‘salt bath’ to facilitate wound healing.

To do this, run a warm bath and place a handful of table salt in the water. You should not rub the penile wound site, but pat the area dry.

Catheter removal

The catheter will be removed in clinic by the nurse practitioner after about 10–12 days. At this time the wound should be healing well.

UCLH Macmillan Cancer Information Centre
Email: uclh.supportandinformation@nhs.net or the clinical nurse practitioner: uclh.andrologycancercns@nhs.net

Macmillan Cancer Support
Website: www.macmillan.org.uk

Macmillan Helpline
Freefone helpline on 0808 8080 000
The helpline number is also free from these mobile phone networks: 3, EE, O2, Virgin and Vodafone (when calls are made from the UK).

Cancer Research UK
Website: www.cancerresearch.org.uk
This website provides facts about cancer, including treatment choices.

Orchid – fighting male cancer
Website: www.orchid-cancer.org.uk

UCLH cannot accept responsibility for information provided by other organisations.

University College at Westmoreland Street
Switchboard: 020 3456 7890
Website: www.uclh.nhs.uk

For more information you can contact the clinical nurse practitioners as follows:

Sadie Molloy
Mobile: 07852 219921
Email: uclh.andrologycancercns@nhs.net

Make a note of your clinicians' names and the department's contact details, for future reference.