Testicular Cancer Information

Introduction

The information contained in this booklet has been prepared to provide general guidance to patients who have been diagnosed with testicular cancer. Although the booklet will provide you with some of the information that applies to your individual care, it is important to remember that every case is different and this information is therefore not exhaustive and does not constitute medical advice.

The care/ treatment that you require will be discussed with you by a member of the Testicular Cancer Team. If you have any queries or require any further details about your care/treatment, then you should contact a member of the Testicular Cancer Team via the contact numbers detailed below.

Testicular cancer is the commonest form of cancer in younger men but it remains relatively rare with approximately 2300 new cases in the UK per annum.

It is highly curable with appropriate treatment, even when the disease has spread to other organs in the body with an overall cure rate of approximately 90%. The following information describes this type of cancer and the relevant treatment and helps anyone who is diagnosed with this tumour to understand how and why decisions regarding appropriate treatment options for their individual care are reached. With this information, it is hoped you will feel that you have the resources needed to be involved in making decisions about your medical management. This pack also offers background information from diagnosis to discharge and explores some of the common issues that you may have questions about.

Addenbrooke’s Hospital Contact Numbers

Oncology Nurse Practitioner (Testicular Tumours): 01223 256453

Oncology Centre Reception and Appointments: 01223 216551/ 216552

Oncology Day Unit: 01223 216395

Chemotherapy Day Unit: 01223 217099

Radiotherapy Reception: 01223 217525

Ward C9: 01223 274223

Ward D9: 01223 217707/ 217708

Helplines

Macmillan Cancer Support Website (opens in a new tab)

Free phone Helpline: 0808 808 0000

Information and support groups

Testicular Cancer Resource Centre Website (opens in a new tab)

Orchid Cancer Appeal Website (opens in a new tab)

Tel: 0808 802 0010

Email the orchid cancer helpline

Testicular Cancer UK Website (opens in a new tab)

What is testicular cancer?

The testicle is made up of groups of specialised cells and has two main functions:

• To produce sperm
• To produce the male hormone, testosterone

Testicular cancer is a disease of certain groups of these cells. The growth and repair of cells within the testicle usually occurs in an organised and controlled manner. If for some reason, the process gets out of control, the cells will continue to divide and grow developing into a lump, which is called a tumour.

A malignant tumour consists of cancer cells which have the ability to spread beyond the testicle and if left untreated may invade and destroy surrounding tissue. Sometimes cells can break away from the original (primary) cancer and spread to other organs in the body via the bloodstream or lymphatic system. When these cells reach a new site, they can continue to divide and form a new tumour, known as a secondary or metastasis.

There are two main types of testicular cancer - seminoma and non-seminoma. Occasionally there can be a mix of the two. These tumours are known as germ cell tumours. Rarely, these tumours can develop as primary tumours outside the testicle and the testes can be uninvolved.

Seminomas most commonly occur in men between the ages of 25 and 55 years of age, while non-seminomas usually affect younger men from 15 to 35 years.

Rarely, non-Hodgkin lymphoma can occur in the testicle, usually in men aged 50 or over. Other rare types of testicular tumour are Leydig cell, Sertoli cell tumours or sarcomas. If you have this type of cancer, further information will be given to you by your doctor or nurse.

The cause of testicular cancer has not been identified but it is associated with other factors:

• Undescended testicles (this is called crypto-orchidism and is usually corrected whilst still a child with a surgical procedure called an orchidopexy)
• It is far more common in the European and American population than in men of Asian, Oriental or Afro-Caribbean origin.
• Several links within families have been identified. The brother of a patient is 5‑10 times more at risk of developing the disease and the risk is double to their sons. Nevertheless the absolute risks are low as the tumour is so rare.

Various theories have been suggested including lifestyle or environmental factors and trauma, but none have yet been confirmed through research.

If you are interested in more detailed information on testicular cancer, we recommend you click here for the Macmillan book - understanding Testicular Cancer (opens in a new tab).

Signs and Symptoms of Testicular Cancer

In the vast majority of cases (80-90%), testicular cancer presents as a swelling or lump in the testicle. This is usually painless. However, in 15% of cases, men will experience pain or discomfort, often referred to as a ‘dragging’ sensation. It is worth remembering that not all testicular lumps are cancer as cysts and infection, known as orchitis, are far more common. However, it is important to have all lumps examined by a doctor.

Other symptoms can be as a result of metastatic disease and may include:

• backache
• cough or shortness of breath
• swelling of the breast tissue
• weight loss
• general rapid deterioration in health

Your GP will have referred you to a specialist surgeon known as a urologist who will arrange for you to have an urgent ultrasound scan of the testes which, in many cases, can confirm the suspected diagnosis. Once a diagnosis has been made, the urologist will discuss your treatment plan with you. The most likely next step is for the affected testicle to be removed surgically which is both therapeutic as it removes the primary tumour, and diagnostic as it allows this to be examined to determine the type of cancer involved. Once this has been done, the urologist will refer you to a doctor who specialises in cancer, called an oncologist.

Post-diagnosis and staging

A diagnosis of testicular cancer is confirmed following surgery to remove the tumour in the testicle. This is called an orchidectomy. Analysis of the testicular tissue under a microscope by a pathologist, a specialist doctor, identifies which type of testicular cancer it is. All tissue specimens are seen by two pathologists, one at the local hospital where the operation is performed and then by a specialist pathologist at Addenbrooke’s. This ensures that an accurate diagnosis is obtained and we are able to plan any treatment based on a specialist opinion.

Occasionally, when the testicle has not been removed or there is no evidence of a tumour in a testicle on ultrasound scan, a diagnosis can be made on a blood or urine test for substances called tumour markers (see relevant sheet for more information), and/or signs and symptoms of spread of the disease on physical or X‑ray examination. Very rarely, a biopsy, where a small amount of tissue is removed from a lump outside the testicle, may be required to confirm the diagnosis.

Following the diagnosis, a body scan is performed of the chest, abdomen and pelvis to screen for any signs that the disease has spread. This scan will be reported at the local hospital where it is performed and will then be sent to Addenbrooke’s to be reviewed. As testicular cancer has a predictable pattern of spread, potentially affected areas are closely examined for signs of the cancer.

Once the details of the histology, the body scan and tumour markers are available, the oncologist, a doctor who specialises in cancer, is able to make an expert decision on the stage of the tumour and the best options for treatment. Treatment can include radiotherapy, chemotherapy and/or surgery.

It can take a little time for all the tests to be arranged and for the results to be available so it may be a few weeks before you are seen by the oncologist. Once all the information is available, you will receive an appointment to see the oncologist in their Outpatient Clinic at Addenbrooke’s Oncology Centre in Cambridge.

What are tumour markers?

Tumour markers are a group of blood tests which indicate the growth of testicular cancer cells and are important in the staging of testicular cancer. There are three separate tests:

• AFP - Alpha-fetoprotein
• HCG - Human Chorionic Gonadotrophin
• LDH - Lactate Dehydrogenase

The AFP and HCG are produced when testicular cancer cells are growing.

The LDH is used at diagnosis to suggest how far the disease has spread.

Not all germ cell cancers produce these tumour markers - approximately 70% of non-seminomas are ‘marker positive’ and approximately 20-30% of seminomas. These blood tests are also very important as an indicator for response to treatment and for use in follow up after treatment. They will be checked regularly throughout any treatment and during follow up at the Oncology Centre. They are specific to germ cell tumours and are not blanket screening tests for all types of cancer.

Oncology New Patient Clinic

You will be seen by the oncologist within a few weeks of your surgery.

Oncology is the area of medicine which treats cancer. You have been referred to the regional cancer centre because testicular tumours are rare and the specialist oncologists, Dr Danish Mazhar, Dr Constanza Linossi and Dr Han Wong and their team, are based at Addenbrooke’s Hospital. The team consists of:

• Consultant Medical Oncologist – Dr Danish Mazhar
• Consultant Medical Oncologist – Dr Constanza Linossi
• Consultant Medical Oncologist – Dr Han Wong
• Specialist Registrar
• Specialist Oncology Nurse Practitioner – Linda Bavister
• Specialist Oncology Support Nurse – Meisha Betran
• Specialist Oncology Support Nurse – Mihail Iovu
• Medical Secretary
• Named Clinic Staff Nurse
• Clinic Assistant
• Clinic Administrator

In order to be able to advise you on the best treatment options for you, information will be collected on:

• Details of the type of tumour
• A CT scan of your chest, abdomen and pelvis
• Blood results of what are known as tumour markers (AFP Alpha-fetoprotein, HCG Human Chorionic Gonadotrophin, LDH Lactate Dehydrogenase)

This information will then be reviewed by a team of experts in order for us to be absolutely sure of the best treatment options for you.

Occasionally, we may not have had the opportunity to have the results reviewed before your appointment, so you may be asked to return within a couple of weeks after seeing the doctor, to allow more time for the necessary reports to be obtained.

Following your first appointment you should have received information on the type of cancer you have and the appropriate treatment options, based on the information available, with at least a provisional plan of when any treatment will commence.

You will be given a telephone contact number so if you have any questions or concerns whilst at home, you are able to contact a named person within the Oncology Centre for advice and support.

The Specialist Oncology Nurse Practitioner for Testicular Cancer

The nurse practitioner is an experienced oncology nurse who works with the other members of the team to provide high quality medical and psychological care for men with testicular cancer and their families.

The nurse practitioner should be present at your first consultation to clarify any information and discuss matters important to you. It is very important that you are able to have your questions answered and concerns discussed, and the nurse practitioner will make every effort to be at your side at this very difficult time. If she is unable to be there, the named nurse for the clinic will be there to offer support and information. You will be given a contact telephone number for the nurse practitioner and named nurse so that you are able to contact them should you have any worries or need further information when at home.

The nurse practitioner will be on hand to co-ordinate any treatment and investigations throughout your treatment and follow up and is always available should you need to get in touch. Her responsibilities include:

• providing information and support
• counselling
• admitting patients receiving chemotherapy to the oncology ward
• ward visits during inpatient stays
• reviews of patients receiving outpatient chemotherapy
• a follow up clinic
• organising and co-ordinating all aspects of treatment and follow up
• a point of contact for all testicular cancer patients and their families

Her primary responsibility is to promote a sense of wellbeing and reduce anxiety following a diagnosis of testicular cancer and reduce the negative effect this event has on you and your family throughout your treatment and on follow-up. She is there to offer advice and support whenever you need it.

She can be contacted on 01223 256453, Monday to Friday 10.00 to 14.00.

Follow-up clinics

Standard protocols exist which outline the best follow up programme for testicular cancer patients. This will be individualised to meet your circumstances but acts as a guide to the frequency of appointments and appropriate investigations during your follow up programme.

At each visit you will be seen by a doctor or the nurse practitioner who will discuss your general health and identify any ongoing or new problems with you.

Depending on whether you have any new symptoms, you may be asked to have a physical examination. We would not normally examine your remaining testicle as we encourage regular testicular self-examination (an information leaflet will be provided which explains how this should be done). Along with regular blood tests for tumour markers and CT scans, this allows us to detect any suggestion of recurrent cancer at an early stage and request appropriate investigations to provide us with more information.

As well as assessing your physical health, we are also interested in your emotional and psychological health as a diagnosis of testicular cancer and its treatment can lead to complicated emotional reactions, and it can be difficult to readjust to 'normal' family and social life. You will be encouraged to express any concerns you have and discuss matters important to you during your consultation.

If you have been treated with BEP chemotherapy, we will also assess your risk of developing cardiovascular disease on an annual basis as it has been shown that you are at an increased risk of developing this following treatment with BEP.

Any other health problems you have can also be discussed and we will offer advice as to the most appropriate person to manage this for you and, if appropriate, can make the necessary referrals.

You will be discharged from regular follow up to ten years following completion of your treatment, depending on the type of treatment you received. However, if you were ever to become concerned in the future about recurrence of the cancer, you can contact the nurse practitioner who will discuss your concerns with you and, if necessary, book you into the clinic to be assessed.

Signs of recurrence

You will be invited to attend for follow up appointments on a regular basis so that any sign of recurrence of the cancer can be detected early. Recurrence may be suggested during the follow-up consultation following discussion about general health issues. Alternatively, the blood tests for tumour markers or CT scans may indicate recurrent disease. Recurrence is rare but is more common during the first two years following treatment.

The following symptoms may suggest recurrence:

• Backache, particularly at night and worse on lying down, not relieved by rest and exercise
• Cough or shortness of breath
• Enlargement or tenderness of breasts
• Swollen glands in the neck
• A deterioration in your general health which does not resolve after a few weeks and for which you can identify no cause

These symptoms commonly occur in situations other than a recurrence of your cancer and it is important to keep things in perspective and not to relate all illness to your cancer. However, if you are ever worried that you may have recurrent disease, please do not hesitate to contact the nurse practitioner who will arrange an early appointment for you to see the oncologist and order any necessary investigations to diagnose the problem.

As time passes, the risk of a relapse reduces. This is why follow up schedule becomes less intensive the further you are from the diagnosis. However, you still need to be monitored for between six and ten years, depending on your treatment, and you should continue to undertake regular testicular self-examination for the rest of your life.

Sexual function

Testicular cancer is a very personal disease, affecting a very intimate part of the body, and it can leave many men concerned with the effect it may have on their sex life.

Removal of one testicle does not normally have any physical effect on sexual function or enjoyment as the remaining testicle compensates by producing more testosterone. None of the treatments offered for testicular cancer of one testicle should cause impotence or erectile dysfunction. However, following the orchidectomy and during treatment it is not unusual to lose one’s sex drive due to the debilitating effects of the treatment. There is no physical reason why sexual function should not return to normal, once the side effects have resolved.

It has been suggested that radiotherapy may affect sexual enjoyment due to damage to the nerves in the abdomen which control sexual function. However, this was reported when the doses of radiotherapy routinely given were much higher and has not been related to the standard dose we administer with modern radiotherapy treatment.

A small proportion of men do experience ongoing sexual problems. Rarely, men can experience pain over the scar or in the scrotum which can affect their sex drive and enjoyment.

Occasionally, abdominal surgery following chemotherapy can result in what is called ‘retrograde ejaculation’. Sexual performance and enjoyment are unaffected, but the sperm ejaculates backwards into the bladder and is a result of the nerves being damaged during abdominal surgery. The risk depends on the extent of surgery required. In some people, this can be reversed with appropriate medication.

For many men who experience problems, expert opinion suggests that these are more likely to be psychological in origin due to the emotional stresses and anxieties a diagnosis of testicular cancer brings. It is very difficult to separate the emotional from the physical with regard to sexual function, and, if you are experiencing any problems, you are encouraged to talk to one of the team at an early opportunity as, the longer problems persist, the more difficult they can be to resolve.

Glossary – Testicular Tumours

AFP -Alpha-fetoprotein - a tumour marker

Adjuvant - Treatment given to reduce the risk of recurrence in stage I disease

Biopsy - A procedure to remove cells for analysis to determine a diagnosis

Carcinoma in situ - CIS - pre-cancerous changes to cells which will, if left untreated, develop into cancer in the future

Chemotherapy - Treatment with drugs

CT Scan - A body scan used to detect metastatic disease

Crypto-orchidism - Undescended testicle

GCT -Germ cell tumour - the commonest type of testicular cancer including teratoma and seminoma

HCG - Human chorionic gonadotrophin - a tumour marker

HRT - Hormone replacement therapy

LDH - Lactate dehydrogenase - a tumour marker found in the blood

Leydig cell tumour - A rare type of testicular cancer

Lymphoma - A type of cancer which can present in the testis, usually found in older gentlemen

Oncology - The treatment of cancer

Oncologist - A doctor specialising in the treatment of cancer

Orchidectomy - Operation to remove the testicle

Orchidopexy - Operation to bring the testicle down into the scrotum

Pathology - The area of medicine which specialises in diagnosing disease by examining cells from a tumour under the microscope

Pathologist - A doctor who specialises in pathology

Radical - Treatment given with the intention of curing the cancer

Radiotherapy - Treatment with radiation

Recurrence/ relapse - When cancer comes back

Palliative - Treatment given to relieve symptoms

Sertoli cell cancer - A rare type of testicular tumour

Seminoma - A type of testicular tumour

Sperm cryopreservation -Sperm banking

Teratoma - A type of testicular tumour

Testosterone - Male hormone produced by the testicles

Tumour marker - A substance found in the blood which can indicate the presence of cancer and can be used to monitor response to treatment and detect relapse

Ultrasound scan - A scan used to identify a tumour inside the testicle

Privacy and dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and/or specialist one to one care is required.