TCRC's Helpful Hints
Hindsight is 20-20. These are the kinds of practical things many testicular cancer patients say they wish someone had told them at the beginning. Some are about medicine, but most are about making an unpleasant experience a little easier, staying organized, and avoiding problems that are easier to prevent than fix later.
People recover differently, and treatment has changed substantially over the years. Use these as ideas to discuss with your own treatment team, not as instructions that apply to everyone. If you have a useful hint of your own, let us know.
Getting Through the First Few Weeks
Ask how and when you will get the pathology results. Waiting for the pathology report can be one of the most stressful parts of the entire process. Before surgery, ask whether the result will appear in a patient portal, whether someone will call you, and whom you should contact if you have not heard anything.
Keep copies of everything. Save the pathology report, tumor-marker results, scan reports, operative report and treatment summary. If you later need a second opinion or develop a new problem years from now, having the exact records can save a great deal of time.
Bring another person, take notes, or record the important questions. It is very easy to forget half of a conversation when you are newly diagnosed. A spouse, partner, friend or family member may also think of questions that never occurred to you.
Learn enough to ask good questions. You do not need to become your own oncologist, but understanding your pathology, stage, tumor markers and treatment options makes it much easier to participate in decisions. The
TC Primer,
Staging pages and
Questions to Ask are good places to start.
Do not be afraid to ask for another opinion. Testicular cancer is uncommon, and difficult cases benefit from people who treat a lot of it. The TCRC
Experts List can help when the diagnosis, pathology or treatment plan is unusual or complicated.
Know how your insurance works before you need it. Find out whether referrals or prior authorization are required, which hospitals and specialists are in network, and whom to call when something is denied. Keep notes of important calls and authorization numbers.
Before and After Orchiectomy
Ask about fertility before treatment, not afterward. If biological children might ever matter to you, ask about sperm banking before orchiectomy, chemotherapy, radiation or other treatment that could affect fertility. See
Fertility 101.
Ask whether a preoperative hormone baseline would be useful. This is particularly important if the remaining testicle is small, previously undescended, injured or otherwise questionable, and it is essential when surgery may remove the last adequately functioning testicle. See
Testosterone: Symptoms & Testing and
TC Twice.
Wear loose clothing home. Elastic-waist pants or shorts are generally much more comfortable than tight jeans after an inguinal orchiectomy.
Cold packs can help with swelling and discomfort. Follow the surgeon's instructions, keep a layer of cloth between the cold pack and skin, and do not leave it on continuously. A bag of frozen peas works surprisingly well because it molds around the area.
Think about constipation before it becomes a problem. Opioid pain medicines can cause substantial constipation. Ask before surgery whether you should have a stool softener or laxative available and what the surgeon recommends. Do not wait several days for severe constipation before mentioning it.
Give yourself time to recover. Some men feel remarkably good after a few days and others take longer. Abdominal surgery such as RPLND is a much bigger operation than an orchiectomy. Do not use somebody else's recovery time as a deadline for your own.
Laughing, coughing and getting out of bed may hurt more than expected. Supporting the incision with a pillow or your hand can make sudden movements more comfortable. Ask the surgical team for instructions if coughing, breathing deeply or moving is unusually painful.
Chemotherapy
Take the anti-nausea plan seriously. Modern antiemetic medicines can prevent or greatly reduce chemotherapy-related nausea, especially when they are taken on schedule before symptoms become severe. If the prescribed plan is not working, tell the oncology team. There are several different drug classes and the regimen can often be adjusted.
If losing your hair will bother you, consider cutting it short before it starts falling out. Some men prefer having a little control over the timing instead of waiting for hair to come out in clumps. Others would rather leave it alone. There is no right answer.
Look after your mouth. Brush gently with a soft toothbrush and follow the oncology team's recommendations for mouth rinses. Alcohol-containing mouthwash can be irritating. Report sores, white patches, significant pain or trouble eating. If time permits, dealing with important dental problems before chemotherapy can reduce problems later.
Ask what fever means an immediate phone call. Chemotherapy can lower white blood cell counts and make infection dangerous. Your oncology team should give you a specific temperature threshold and a number to call day or night. Do not wait until the next appointment if you meet their fever instructions or feel seriously ill.
Growth-factor shots are useful in the right situation, but they are not something every patient automatically needs. Drugs such as filgrastim or pegfilgrastim may be used to reduce the risk or duration of severe neutropenia depending on the chemotherapy regimen and the individual patient's risk. The oncology team should make that decision.
Drink enough, but do not turn hydration into a contest. Cisplatin treatment usually includes a deliberate hydration plan. Follow the amount and electrolyte advice from the treatment team. Drinking extreme amounts of plain water can itself be dangerous.
One particularly useful rule: if a side effect is making it hard to eat, drink, sleep, take your medications or function, tell the treatment team. There is often something they can do, and many supportive treatments work better when problems are addressed early.
Radiation Therapy
Ask for help with nausea rather than assuming you have to tolerate it. Radiation used for testicular cancer can cause nausea in some patients depending on the treatment field. Antiemetic medication can be used when needed.
Fatigue and stomach symptoms vary enormously. Some men get through radiation with relatively little difficulty and others do not. Keep the team informed about nausea, diarrhea, poor intake or unusual fatigue so that symptoms can be treated rather than simply endured.
Follow the radiation team's hydration and diet instructions. Normal hydration is useful. Extremely large amounts of water are not a treatment for radiation nausea and can be unsafe.
Testosterone and Hormone Problems
Do not ignore changes in sex drive, morning erections, energy, mood or hot flashes. One remaining healthy testicle usually makes enough testosterone, but not always. Testosterone problems can also appear years later. See
Testosterone: Symptoms & Testing.
If you need testosterone replacement, the details matter. Dose, formulation, timing of blood tests and the interval between doses can make a major difference in how well replacement works. See
Testosterone: Replacement Therapy.
CT Scans and Contrast
Tell the imaging staff about any previous contrast reaction before the scan. Sneezing, hives, swelling, breathing difficulty or other prior reactions may change how the next study is planned. Do not assume that a reaction means you can never receive contrast again. The radiologist may recommend a different contrast agent, premedication or a different type of scan depending on what happened before.
If oral contrast upsets your stomach, say so. Different institutions use different preparations and some scans do not require oral contrast at all. Ask whether there are alternatives rather than suffering through a preparation that previously caused major problems.
The TC Experience
There will be unpleasant and frightening days. For most men, those days pass. Health returns, normal life comes back into focus, and testicular cancer becomes something that happened to you rather than the thing that defines every day.
It may still change your perspective. You may think differently about health, time, relationships or what is worth worrying about. Some of that can be uncomfortable, but some survivors also find that it leaves them with a clearer sense of what matters.
The mechanics of sex after a straightforward unilateral orchiectomy are usually much less affected than many newly diagnosed men fear. If the remaining testicle is healthy and testosterone is adequate, losing one testicle by itself should not prevent erections, orgasm or a normal sex life. See TC and Sex for more.
Current Medical Resources
