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, along with helpful information.
Ask for copies of EVERY medical record - every radiologist report, blood test, scan - it 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?
- If you were in my position, what treatment option would you choose?
- What side effects should I expect from treatment?
- What are the other risks of treatment?
- How long will it take me to recover from treatment?
- When can I go back to work?
- How soon after treatment can I have sex?
- What are the chances that my cancer will recur?
- Should I bank sperm to preserve my fertility?
- Does one type of treatment reduce the risk of recurrence more than another?
- What should I do to be ready 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 like radiation, chemotherapy and RPLND surgery can have adverse effects on fertility.
Ask your doctor for a healthcare power of attorney form. Appoint an attorney to create a living will / healthcare treatment instructions and a regular power of attorney. Having a regular power of attorney can allow someone else of your choosing to manage your finances. Make sure you update your regular will.
To help manage your finances during your treatment, set up your bills for automatic payments. Have someone you trust manage your bills with you. This way you lessen worry about possibly missing any deadlines or paying an incorrect amount.
Before the Orchiectomy
The doctor should have some blood work done. It's important to check your blood for the presence of certain tumor markers and their levels while the tumor is still in your body. Tumor markers are a great tool used to determine the effectiveness of treatment. Having blood work done before will also provide a baseline.
Have your urologist measure your testosterone levels. This is not required but it is strongly recommended. This will establish a baseline that will be helpful in diagnosing any problems you may or may not have later. They should draw blood for serum testosterone, FSH, LH, SHGB and Prolactin.
The orchiectomy is usually performed as a same day 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 the surgery.
After the Orchiectomy
Use a gel ice pack for the swollen area. If you do not have a pack you can use a bag of frozen peas or corn on the incision area (wrapped in a thin cloth or paper towel). It helps with the pain and swelling and it’s easy to mold to the shape of the abdomen.
Have them measure your tumor markers 7-10 days after surgery and before any further treatment. Tumor markers have a halflife 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 surgery your care will switch from a urologist to the oncologist. Your urologist should give you a referral for an oncologist. There are two types of oncologists; Medical Oncologists (chemotherapy) and Radiation Oncologists (radiation therapy). You will have a follow-up appointment with the urologist but for the most part, the rest of your care is with the oncologist.
There are certain diagnostic tests that should be done before you start chemotherapy. Some of them, like the CT Scan, are necessary to both stage the diagnosis and to establish a baseline. You will also want to ask your doctor to schedule a pulmonary function test and an audiogram (hearing test). These are important because on common side effects of chemotherapy and having a baseline is important for comparison later. Also insist on having them measure your tumor markers the first day of chemotherapy, before they start the treatment.
Make sure you have lots of music, reading, movies, etc to do during treatment. You will be extremely bored if you don’t.
Get into the habit of weighing yourself and taking your temperature every day. Keep a log of both numbers.
Drink AT LEAST 8 full glasses of water per day. Drinking a gallon of water helps flush the chemotherapy drugs from your system, minimizing the more toxic side effects. This also helps prevent kidney failure by keeping the chemicals from building up in your kidneys and bladder. If you are not urinating at least once per hour, you are not drinking enough water. If you suffer from diarrhea or vomiting, add gatorade and pedialyte as well. This helps 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 and 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.
The initial staging of the cancer will depend on the pathology reports and CT Scans. This is sufficient 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.