Questions to ask when you are diagnosed

It is important to be prepared before visiting with your doctors.  Below you will find some important questions to ask your doctor along with helpful information.

Ask for copies of EVERY medical record: radiologist reports, blood tests, CT scans, etc., this will be useful later. Ask your doctors to fax or email you a copy of every result. If they prefer faxing documents, there are many email-based fax programs available at little or no cost.

  • What type of testicular cancer do I have?

  • Has the cancer spread outside my testicle?

  • What stage is my cancer?

  • What are my treatment options and what are the risks?

  • Should I seek a second opinion?

  • Are there any current clinical trials available to me specific to measuring novel biomarkers (miRNA)?

  • What are the recovery details for the orchiectomy (removal of testicle) operation?

  • If you were in my position, what treatment option would you choose?

  • What side effects should I expect from treatment?

  • How long will it take me to recover from treatment?

  • When will I be able to go back to work?

  • How soon after treatment can I have sex?

  • What are the chances that my cancer will come back?

  • Should I bank sperm to preserve my fertility?

  • Will my testosterone levels be affected by this treatment?

  • Can I have my testosterone levels checked before my orchiectomy? (removal of testicle)

  • Does one type of treatment reduce the risk of recurrence more than another?

  • What should I do to be prepared for treatment?

Be sure to write down all the questions you have as well.  
Click here for a printable list of this information.

When cancer is first suspected

  • Talk to your physician about sperm banking.  Cancer therapy (radiation, chemotherapy and retroperitoneal lymph node dissection, RPLND surgery) can have adverse effects on fertility & testosterone levels.

  • Ask your medical team for an Advance Medical Directive or Advance Decision Directive also known as a living will to specify your wishes concerning medical treatments in the event you are unable to make any decisions. If you have a regular will, now is a good time to have it updated. You may also want to execute a regular power of attorney to allow someone else to manage your finances.  

  • Set up as many bills as possible for automatic payments and make sure you have plenty of money in your bank account. Ask someone you trust to open your bills to make sure you don’t miss any deadlines.

Before Orchiectomy surgery

  • Before the orchiectomy, have your urologist measure your testosterone levels. This will establish a baseline that will be helpful in diagnosing problems later. They should draw blood for serum testosterone, FSH, LH, SHGB, and Prolactin.

  • Insist on having them measure your tumor markers before the orchiectomy. They should draw for AFT, Beta HCG and LDH. This establishes a baseline for comparison with your levels after orchiectomy. Tumor marker levels will be rechecked about a week after orchiectomy for Beta HCG and about a month after for AFP.

  • The orchiectomy is usually performed as an outpatient surgery.  You will need someone to drive you to the hospital and pick you up afterwards. You will not be able to drive right after surgery.

After the Orchiectomy

  • Use a bag of frozen peas or corn on the incision area (wrapped in a paper towel). This will help with pain and swelling and is easy to mold to the shape of your abdomen.

  • Have your doctor measure your tumor markers 7-10 days after surgery and before any further treatment. Tumor markers have a half-life of about a day. If the cancer was isolated to the testicle, your tumor markers should be getting close to normal after 7-10 days. If the tumor markers do not normalize, it is a sign of active cancer still in your body somewhere.

  • After the orchiectomy with the urologist, you care will be managed by your urologist or an oncologist depending on the stage of diagnosis.

    • There are 3 types of oncologists: Medical Oncologist, Radiation Oncologist, and Urologic Oncologist.

Before Chemotherapy

  • There are certain diagnostic tests that should be done before you start chemotherapy.  CT Scans are necessary for staging your diagnosis and establishing a baseline. You will also want to ask your doctor to schedule a pulmonary function (lungs) test and audiogram (hearing test). These tests are important because of common side effects of chemotherapy. Having a baseline is important for comparison later.

    • Insist on having your tumor markers measured the first day of chemotherapy before they start any treatment.

  • During your treatments make sure you have lots of music, reading materials, movies, games, etc. You will be extremely bored if you do not.

During Chemotherapy

  • Get into the habit of weighing yourself and taking your temperature every day.  Keep a log of both numbers.

  • Drink plenty of water per day. Drinking water helps flush out the chemotherapy drugs from your system, minimizing toxic side effects. This also helps prevent kidney failure by keeping the chemicals from building up in your kidneys and bladder. If you suffer from diarrhea or vomiting, add Gatorade and Pedialyte as well. This helps to restore your electrolytes.

  • If you are receiving Bleomycin, try to avoid bruises and scratches.  These will cause “chemo burn” where your skin becomes discolored for a long time around the wound.

  • Your sense of taste and smell will change during chemotherapy.  It is wise to avoid foods you like, as you may develop an aversion to foods eaten during chemo.

  • Take your anti-nausea medication even if you feel fine.  The medication only works to keep nausea away, it will not work if you take it after you are already feeling nauseous.

  • Vomiting will not make you feel better.

General Tips

  • The initial staging of the cancer will depend on pathology reports and CT Scans. This is enough to determine treatment options.

  • If you are suffering from mood changes, fatigue, night sweats, difficulty concentrating or personality changes, talk to your doctor. It is possible you are suffering from testosterone deficiency. It is generally a good idea to see an endocrinologist for evaluation of your symptoms and endocrine levels.