Testicular cancer

What is testicular cancer?

Cancer that develops in a testicle is called testicular cancer or cancer of the testis (plural: testes). The testicles are 2 egg-shaped glands that sit behind the penis in a pouch of skin called the scrotum. They are part of the male reproductive system and produce and store sperm.

Usually only one testicle is affected by testicular cancer, but in some cases, both are affected. About 90 to 95% of testicular cancers start in the cells that develop into sperm, which are known as germ cell tumours.

Anyone with a testicle can get testicular cancer, including transgender women, non-binary people or intersex people.

In Australia, about 960 people are diagnosed with testicular cancer each year, accounting for about 1% of all cancers in men. It occurs most often in men aged 20 to 39.

Types of testicular cancer

The most common testicular cancers are called germ cell tumours. There are 2 main types:

• Seminoma tumours - which tend to develop more slowly than non-seminoma tumours. They usually occur between the ages of 25 and 45 but can also occur in older people.
• Non-seminoma tumours - which tend to develop more quickly than seminoma cancers and are more common in people in their late teens and early 20s. There are 4 main subtypes of non-seminoma tumours including teratoma, choriocarcinoma, yolk sac tumour and embryonal carcinoma.

Sometimes testicular cancer can include a mix of seminoma cells and non-seminoma cells, or a combination of the different subtypes of non-seminoma cells, which are called mixed tumours.

A small number of testicular tumours start in cells that make up the supportive (structural) and hormone-producing tissue of the testicles.

Most testicular cancers begin as a condition called germ cell neoplasia in situ (GCNIS). This was previously called intratubular germ cell neoplasia (ITGCN). In this condition, the cells are abnormal, but they haven’t spread outside the area where the sperm cells develop. GCNIS is not cancer but it may develop into cancer after many years.

Signs and symptoms of testicular cancer

In some people, testicular cancer does not cause any noticeable symptoms, and it may be found during tests for other conditions. When there are symptoms, the most common ones include:

• a swelling or a lump in the testicle (usually painless)
• a change in a testicle's size or shape (such as hardness or swelling).

Occasionally, testicular cancer may cause other symptoms such as:

• a feeling of heaviness in the scrotum
• a feeling of unevenness between the testicles
• pain or ache in the lower belly (lower abdomen), testicle or scrotum
• enlargement or tenderness of the breast tissue
• back pain
• stomach aches.

Not everyone with these symptoms has testicular cancer. If you have any of these symptoms or are worried, always see your doctor.

Risk factors for testicular cancer

There are some things that can make it more likely to develop testicular cancer. These are called risk factors and they include:

• Personal history - if you have previously had cancer in one testicle, you are more likely to develop cancer in the other testicle.
• Family history - if your father or brother had testicular cancer, you are slightly more at risk of cancer.
• If you were born with undescended testicles.
• Infertility - having difficulty conceiving a baby can be associated with testicular cancer.
• HIV and AIDS - there is some evidence that people with HIV (human immunodeficiency virus) and AIDS (acquired immune deficiency syndrome) have an increased risk of testicular cancer.
• Physical features - people born with an abnormality of the penis called hypospadias are at increased risk of developing testicular cancer.
• Cannabis use – there is some evidence linking regular cannabis use with the development of testicular cancer.
• Intersex variations - the risk of testicular cancer is higher in people with some intersex variations, such as partial androgen insensitivity syndrome, particularly when the testicles remain in the abdomen.

Having these risk factors doesn't mean you will develop testicular cancer. Often there is no clear reason for getting testicular cancer. If you are worried about your risk factors, ask your doctor for advice.

Tests for testicular cancer

Your doctor may do some tests to check for testicular cancer:

• Ultrasound to show if a tumour is present and how large it is.
• Blood tests to check your general health and how well your organs are working.

The only way to be sure of the diagnosis is to surgically remove the affected testicle and examine it in a laboratory. The operation, called an orchidectomy, takes about 60 minutes.

In most cases, the surgeon needs to remove only one testicle. It is rare for both testicles to be affected by cancer at the same time. You may decide to replace the removed testicle with an artificial one called a prosthesis.

Having an orchidectomy

Your doctor might ask you to have further tests. These can include:

• CT scans use x-rays to take pictures of the inside of your body and then compiles them into one detailed, cross-sectional picture.
• MRI scans use a powerful magnet and radio waves to create detailed pictures of areas inside the body.
• PET-CT scans use an injection of a glucose (sugar) solution to help cancer cells show up more brightly on the scan.

Stages of testicular cancer

The stage of a cancer means how far it has spread in your body. The most common way doctors decide on a stage for testicular cancer is the TNM system (Tumour-Nodes-Metastasis). This system describes:

• if the cancer is only in the testicle or has spread into nearby blood vessels or tissue
• if the cancer has spread to nearby lymph nodes
• if the cancer has spread to other parts of the body.

Another way of staging cancer is with numbers. Stage 1 means that the cancer is found only in the testicle (early-stage cancer). Stage 2 and above mean that the cancer has spread outside the testicle to the lymph nodes in the abdomen or pelvis, or to other areas of the body.

Ask your doctor or nurse to explain the stage of the cancer. You can also read more from Cancer Council about diagnosing testicular cancer.

Prognosis and survival rates for testicular cancer

When someone is diagnosed with testicular cancer, their doctor will give them a prognosis. A prognosis is the expected outcome of a disease. It is not possible for anyone to predict the exact course of the disease. To assess your prognosis, your doctor will consider:

• your test results
• the type of testicular cancer you have
• the stage of the cancer
• other factors such as your age, fitness and medical history.

Testicular cancer has the highest survival rates of any cancer (other than common skin cancers). Regular monitoring is a major factor in ensuring good outcomes, so it's vital that you attend all your follow-up appointments.

If you have testicular cancer, your doctor will talk to you about your individual situation when working out your prognosis. Every person's experience is different, and there is support available to you.

Treatment for testicular cancer

If you had an orchidectomy and the cancer was completely removed along with your testicle, you may not need further treatment. Instead, you will have surveillance, which is a schedule of regular blood tests, chest x-rays and CT scans for 5 to 10 years. This will help find if there is any cancer remaining or if the cancer has come back.

Chemotherapy

Chemotherapy is the treatment of cancer with drugs that aim to kill cancer cells or slow their growth. Your treatment team may assess that there is a moderate risk of the cancer spreading or returning. In this case, chemotherapy will be recommended.

In rare cases, when the cancer has spread to other parts of the body, chemotherapy may be given before surgery as the main treatment.

Radiation therapy

Radiation therapy uses a controlled dose of radiation to kill cancer cells or damage them so they cannot grow, multiply or spread. Radiation therapy is sometimes given to people with seminoma cancer after surgery to prevent the cancer from coming back or to destroy any cancer cells that may have already spread from the cancer to the lymph nodes.

Surgery to remove lymph nodes

In some cases, an operation called a retroperitoneal lymph node dissection (RPLND or lymphadenectomy) is done to remove lymph nodes at the back of the abdomen that may contain cancer cells.

• Non-seminoma cancer - Your doctors may recommend an RPLND if scans after chemotherapy show that the lymph nodes have not returned to normal size, as this may mean that they still contain cancer cells.
• Seminoma cancer - Chemotherapy or radiation therapy can usually destroy seminoma cancer cells in the lymph nodes, so an RPLND is rarely used. The operation may be offered for advanced seminoma cancer if there are no other treatment options.

Side effects of treatments for testicular cancer

All cancer treatments can have side effects. Your treatment team will discuss these with you before you start treatment. Talk to your doctor or nurse about any side effects you are experiencing. Some side effects can be upsetting and difficult, but there is help if you need it. Call Cancer Council Tel. 13 11 20 or contact cancer support.

Managing lifestyle changes from testicular cancer

Sexuality and intimacy

Having testicular cancer and treatment can change the way you feel about yourself, other people, relationships and sex. These changes can be very upsetting and hard to talk about. Doctors and nurses are very understanding and can give you support. You can ask for a referral to a counsellor or therapist who specialises in body image, sex and relationships.

The removal of one testicle won't affect erections or orgasms but it can affect testosterone levels. RPLND may damage nerves, causing semen to travel backwards into the bladder instead of forwards out of the penis. This still feels like an orgasm, but no semen will come out.

Chemotherapy drugs may remain in your system and be present in your semen for a few days. For a few weeks after chemotherapy, you may have some trouble getting and keeping an erection.

Radiation therapy to the pelvis may temporarily stop semen production. You will still feel the sensations of an orgasm but will ejaculate little or no semen (dry orgasm). In most cases, semen production will return to normal after a few months.

Some tips for managing changes to your sexuality include:

• Be gentle the first few times you are sexually active after treatment. Start with touching, and tell your partner what feels good.
• Talk openly with your doctor or sexual health counsellor about any challenges. They may be able to help and reassure you.
• Protect your partner from any drugs in your semen by using barrier contraception, such as condoms, during chemotherapy and for a number of days afterwards, as advised by your doctor.
• Accept that tiredness and worry may lower your interest in sex and remember that sex drive usually returns when treatment ends.

Fertility

Most people who have had one testicle removed can go on to have children naturally. If you have had both testicles removed (rarely required), you will no longer produce sperm and will be infertile. People who experience retrograde ejaculation after retroperitoneal lymph node dissection will also be infertile.

Both chemotherapy and radiation therapy can temporarily decrease sperm production and cause unhealthy sperm. It may take one or more years before there are enough healthy sperm to conceive a child. In some cases, infertility may be permanent.

Some tips for managing changes to your fertility include:

• Use sperm banking to store sperm before cancer treatment for use at a later date. Samples can be stored for many years.
• Avoid pregnancy until sperm are healthy again by using contraception for 6 to 12 months after chemotherapy or radiation therapy, as advised by your doctor. You may need a sperm analysis test to determine this.
• If infertility appears to be permanent, talk to a counsellor or family member about how you are feeling. Infertility can be very upsetting for you and your family, and you may have many mixed emotions about the future.

Appearance changes

Any type of cancer treatment can change the way you feel about yourself. You may feel less confident about who you are and what you can do, particularly if your body has changed physically. Some people find that their sense of identity or masculinity is affected by their cancer experience.

Give yourself time to get used to any changes to your body. Try to see yourself as a whole person (body, mind and personality) instead of focusing on the parts of you that have changed. Try talking to other men who have had a similar experience and let your partner, if you have one, know how you are feeling. You may also find it helpful to talk to a psychologist if you are having trouble adjusting to any changes.

If you continue to be concerned about your appearance, you may wish to speak to your medical team about getting an artificial testicle (prosthesis).

Living with advanced cancer

Rarely, testicular cancer is so advanced that treatment cannot make it go away and your doctor may talk to you about palliative treatment. This is treatment that helps to improve people’s quality of life by managing the symptoms of cancer without trying to cure the disease.

Many people think that palliative treatment is for people at the end of their life, but it may help at any stage of advanced cancer. It is about living for as long as possible in the most satisfying way you can. As well as slowing the spread of the cancer, palliative treatment can relieve pain and help manage other symptoms. Treatment options may include radiation therapy, chemotherapy or other medicines.

Palliative treatment is one aspect of palliative care, in which a team of health professionals aims to meet your physical, practical, emotional, spiritual and social needs. The team also supports families and carers.

Support for carers, family and friends

Caring for someone with cancer can be difficult sometimes. If you are caring for someone with testicular cancer, these organisations can help:

• Cancer Council - Information and support line Tel. 13 11 20 (or 13 14 50 for an interpreter) to speak to an experienced cancer nurse
• Cancer Council - Caring for someone with cancer
• Carer Gateway Tel. 1800 422 737
• Carers Australia
• Carers Victoria Tel. 1800 514 854

Where to get help

• Your GP (doctor)
• Cancer Council
  • Information and support line Tel. 13 11 20 (or 13 14 50 for an interpreter) to speak to an experienced cancer nurse
  • Testicular cancer
  • Fertility
  • Sexuality and intimacy
  • Cancer Council Victoria, My Cancer Guide - Find support services that are right for you.
• NURSE-ON-CALL Tel. 1300 60 60 24 for expert health information and advice (24 hours, 7 days)
• Healthy Male
• True North - Testicular cancer