Testicular cancer is a young man’s disease. The average age at diagnosis is 33, a time of life when men may be launching their career, starting relationships or planning a family.
Fortunately, “testicular cancer is one of the success stories,” says UNC Health urologic oncologist Hung-Jui “Ray” Tan, MD. “More than 95 percent of patients will be cured.”
But while testicular cancer is very treatable, “there are a lot of survivorship implications. We’re only now getting a clearer idea of the impact.”
Survivors may be concerned with fertility, sexual functioning, school and work performance, mental health, heart health and body image. Ongoing support is important.
Diagnosing and Treating Testicular Cancer
Though less common than other cancers, testicular cancer is the most common cancer among young adult males. Overall, about 1 in 250 males will get it, according to the American Cancer Society. A man’s lifetime risk of dying from testicular cancer is about 1 in 5,000.
Testicular cancer is often discovered when the patient finds a lump or swelling. Doctors examine the patient and may do an ultrasound or blood tests to confirm the diagnosis.
In most cases, the testicle is removed surgically. Patients may also receive chemotherapy, radiation or both.
Testicular cancer rarely comes back (about 12 percent of patients in a recent study), and if it does, it’s often treatable, Dr. Tan says. If the cancer is going to come back, it usually does so within three years.
Unique Needs for Survivors of Testicular Cancer
The end of treatment often is the start of a more important period—getting support for the life changes that come with testicular cancer.
“Since this is a young man’s cancer for the most part and it’s rare, there can be a sense of isolation for these patients,” says UNC Health adult nurse practitioner Mary Dunn, NP-C, director of the UNC Testicular Cancer Survivorship Clinic, which helps men navigate survivorship. “They are at very different stages of life than cancer patients who are diagnosed at older ages.”
Dunn says her patients include college students and recent graduates, active military troops and newlyweds. Some want to start families. Some have young children at home.
“They have unique survivorship needs,” she says.
Long-Term Side Effects from Testicular Cancer Treatment
Sometimes treatments have long-term side effects, Dunn says. She helps patients understand what’s going on and works with a multidisciplinary team to help them find relief.
One of the most common symptoms of treatment is numbness or tingling in the hands and feet, also called chemotherapy-induced neuropathy.
Another common side effect is ringing in the ears (tinnitus), which occurs in about 20 percent of her patients, Dunn says. The ringing can cause problems with hearing, focusing and sleeping.
“We ask them before treatment about any hearing problems,” she says, “then we monitor them to see if the problems get worse.”
Rarely, chemotherapy can be toxic to a patient’s lungs, she says, but these reactions are typically seen during treatment and the drug causing problems is discontinued. Another rare side effect, which can be caused by chemotherapy, radiation or both, is a slightly increased risk of heart disease. Signs could include high blood pressure, abnormal cholesterol levels or obesity, Dunn says. To decrease risk of heart disease, she recommends routine exercise, balanced diet and avoiding use of tobacco products.
Fertility and Sexual Function After Testicular Cancer Treatment
Fear and uncertainty are common among testicular cancer survivors, particularly around fertility and sexual issues, Dunn says.
If the patient is treated only with surgery—that is, one testicle is removed—fertility is usually not affected. “They still have one testicle that can produce healthy sperm,” she says.
The chance of infertility increases with chemotherapy, radiation and lymph node dissection (if the cancer has spread). Even if treatment causes infertility, there’s a chance that in time the patient may begin producing healthy sperm again, though there’s no guarantee.
“Typically, before we treat anyone for testicular cancer with chemotherapy or radiation, we offer sperm banking, through a fertility preservation coordinator,” she says. “Most men take us up on that.”
The cost of using banked sperm for in vitro fertilization (IVF) can be high, she says, but if a man’s sperm is stored, more fertility options are available.
Another difficult reality for some men treated for testicular cancer is changes in their sexual function. The chances depend on the patient’s general health, the stage of his cancer when diagnosed, and the types of treatment that were used.
Erectile dysfunction after testicular cancer is very rare, but lymph node dissection can lead to retrograde ejaculation, when semen enters the bladder. Treatment also can cause low testosterone levels, which can adversely impact a man’s sex drive. A urology provider can work with a patient to find effective ways to increase testosterone and treat any sexual function issues.
It’s important for all men, but testicular cancer survivors in particular, to avoid use of tobacco or electronic cigarettes, and to take steps to manage depression and anxiety, all of which can impair sexual function, Dunn says.
Emotions and Body Image for Testicular Cancer Survivors
Survivors often feel depression, anxiety, fear, anger and sadness, Dunn says. Some men are reluctant to talk about their feelings.
“A lot of them feel like they need to be strong,” she says. “Most are young, and maybe they haven’t had experiences where they had to endure strong emotional responses and learn coping skills. Sometimes all they need is someone to listen.”
Mental health counseling and support groups can be a big help. So can involving a caregiver, such as a partner or a parent.
“Involving the partner or caregiver is hugely important in all cancers,” Dunn says, “but it’s unique in this situation because of their age. Maybe they’re newly married or have small kids at home. All the things affecting them are affecting their partner, too.”
Having one testicle removed can change the way a man looks, and some men are really concerned about that, especially if they are young and do not yet have a partner.
“In the breast cancer world, we always consider reconstructive surgery,” Dunn says. “Anything below the belt is sometimes forgotten.”
Prosthetic testicular implants are available and can be placed at the time of testicle removal. It’s a very personal choice whether men choose to have one placed, she says.
Finding Community as a Testicular Cancer Survivor
Dunn encourages her patients to seek out other men who have had testicular cancer. There are foundations and support groups at many academic facilities and in many communities.
For example, the Raleigh Testicular Cancer Foundation was started by a former testicular cancer patient who wanted a community of survivors to provide information and support.
“I help as much as I can,” Dunn says, “but there are a lot of questions another patient can answer better than a medical professional can. The best care takes a team.”
If you have questions about your health, talk to your doctor. If you need a doctor, find one near you.