Friday 7th September 2012
Sarah Henderson, Macmillan Urology Nurse Specialist, discusses this rare and devastating tumour.
Penile cancer affects about 400 men each year in the UK. Although it is mainly seen in men over 60, 20% of cases will be diagnosed in men under 40.
Symptoms can vary widely from a small, reddened area on the glans, to a large fungating mass with enlarged groin lymph nodes. Diagnosis may be delayed either due to the man not seeking help or lack of knowledge from healthcare professionals.
Treatment can vary from topical chemotherapy to a variety of surgical techniques. Radiotherapy to the penis is rarely used as a primary treatment now. Treatments have changed dramatically in the last decade with penile preserving surgery now being the most common primary management. Radical penectomy may be necessary for more advanced tumours.
The first place this cancer will spread to is the groin lymph nodes, so staging of lymph nodes is important.
Penile cancer is managed in supra regional centres. There are about 10 such centres spread across the UK. The purpose behind this is to consolidate expertise into specialist centres where clinicians work in teams that see this problem on a regular basis.
This unfortunately means that patients may have to travel long distances for their treatment. Management can be streamlined to a certain degree if scans and outpatient appointments are booked on the same day. Treatment so far from home can be isolating and although hospital stays have been reduced, it is important to consider local accommodation for partners or family members.
Travel and accommodation costs can also be significant so Macmillan Grants and referral to a local benefits service can be very helpful. Communication with the patient’s local team is key to a smooth transition of care.
Subsequent oncological treatments, such as chemotherapy or radiotherapy, are more likely to be carried out closer to the patient’s home. There is a key oncologist in each of the referring centres who will coordinate these treatments.
Prognosis depends on the stage of the cancer and those with lymph nodes that have extracapsular spread will have the poorest chance of survival.
Psychological intervention is important for men affected by penile cancer and their partners. All penile cancer centres should have access to psychological services. The effect of treatments for penile cancer can be significant and if more radical surgery is necessary it may impact not only on sexual function but urination as well. Sitting down to pass urine may have both a psychological and social impact.
It is difficult to provide support groups because of the nature of the disease and the wide area from which patients travel.
Patient surveys have shown that web-based support is preferred. There are a couple of online groups, including Macmillan’s Online Community
, and details of these are provided at diagnosis. This method of support is not suitable for everybody solocal cancer support centres may be helpful. This can be a devastating cancer, but good communication and team work can improve the patient experience.
Macmillan has a fact sheet about penile cancer that you can order from be.Macmillan and more online information.