Quality of Life Issues
Having had a diagnosis of testicular cancer will remain an important part of your medical history, and you should be sure that all of your present and future healthcare providers, including dentists, about your history and treatments.
Follow up after your primary treatment is important for many years to come and typically includes:
- Lab work (HCG, LDH and AFP blood tests) every 1-2 months
- Chest x-ray every 1-2 months
- CT scan every 3-6 months
- Physical exam every 3 months
The time between these tests will be lengthened every year until you reach your 5-year anniversary date.
It is important to continue your follow up with your physician as ordered. He of she will determine how frequently you should be seen and tested.
The risk of the cancer returning is based on individual factors that you should discuss with your physician. While the risk of recurrence gets lower every year, it is not zero.
The diagnosis and treatment of testicular cancer can be accompanied by significant levels of stress and emotional burden for the man and his partner and family. It is important to realize that it is not unusual for this stress to affect your self-concept and feelings related to your sexuality and sexual functioning. The best approach to managing these feelings typically involves open communication with your health care team. Discussing your feelings concerning sexuality and sexual functioning can help you regain a sense of control at a time when men often report that they feel they are losing control over important areas of their life.
It is not uncommon for men to have some medical concerns related to surgery and male hormones. The facts are that if you had 1 testicle removed, the other testicle can usually make extra male hormone (testosterone) and your sexual desires and performance should not suffer any long-term effects. You may find yourself less interested, or not interested at all, in sex during the diagnostic, treatment, and postoperative periods. Physical side effects (nausea or fatigue) and psychological stress (fear, anger, depression, anxiety) can also temporarily decrease your desire to have sex.
If you have had both testicles removed, you will be given hormone replacement therapy. Testosterone can be taken by mouth (not as effective because it has to go through the digestive system) or given by injection every 2-3 weeks. It can also be applied locally (Androgel®) using a patch that releases a steady amount of testosterone, which is absorbed through the skin. Men need testosterone in order to get an erection and have a normal libido (sex drive). Low testosterone levels can cause mood problems and fatigue. Given these effects, your testosterone levels will be monitored on an ongoing basis.
The surgical procedure called a retroperitoneal lymph node dissection (RLNPD) can cause a condition called retrograde ejaculation, which causes you to ejaculate backwards. The semen goes back into your bladder instead of exiting your body through your penis. Your orgasms will look different (they will be “dry” because no semen comes out), feel different to you, and you will be infertile.
If you have had radiation or chemotherapy, you should continue to wear a condom even after therapy has ended. These treatments can cause you to produce abnormal sperm resulting in birth defects in any children that may be conceived. Your physician will tell you how long you should use birth control, usually about 3 months. Once this period has ended, your risk returns to pre-treatment level. At no point can you pass your cancer to your partner during sex.
It is important to recognize that men can find it difficult to discuss their sexual difficulties or changes in their level of interest in sex with their partners and even with their healthcare team. Please try your best to be open about these topics when talking with your nurse, physician, and caregivers. We deal with many, many men who are/were in similar circumstances and may be able to offer significant help.
Given that the survival rate for testicular cancer is so high, quality of life issues are very important to millions of survivors. If you have not been given information about sperm banking, and you may want to father children in the future, please discuss it with your doctor or nurse. Please discuss this option before starting radiation or chemotherapy and before surgery as these treatments are likely to cause infertility.
If you are interested, you should call the fertility center as soon as possible. Locally the center is Infertility & In Vitro Fertilization Medical Associates of WNY. Their phone number is (716) 839-3057.
If you decide to participate, you first need some blood tests to rule out certain infectious diseases, such as hepatitis. If these are negative, you will need to provide a sperm sample, which will be analyzed and processed.
After your sperm is collected, cryopreservation (freezing), stops all its activity, until it is thawed out. Freezing kills most of the sperm, but the survivors may be usable for many years. Sperm storage is fairly simple, accessible, and affordable.
There have been enormous advances in reproductive technologies over the past 10 years and it is now possible to fertilize an egg in vitro with a single sperm cell (intercytoplasmic sperm injection or ICSI).
Sharing Hope is a program from Fertile Hope to help increase access to egg, embryo, and sperm freezing for newly diagnosed cancer patients whose medical treatments present the risk of infertility. They provide discounted sperm banking services, access to fertility medication, and discounted egg and embryo freezing services. Contact Fertile Hope at 888-994-HOPE.
Coping with a diagnosis of cancer can be an overwhelming experience. When treatment also results in changes in physical appearance or sexuality, it can become even more distressing. Recovery is best viewed as a process rather than event. You should allow yourself time to adjust, and keep in mind that there is not a “right” or “wrong” way to feel. The period of treatment and recovery may also be difficult for your partner, who may share many of your feelings. It is important to maintain open lines of communication during your treatment and recovery.
While the adjustment process is marked by overall improvement with the passing of time, it also may also involve fluctuations from day-to-day. Typically, you will periodically have a “bad day”, a day where you may feel sad, scared or worried. It is important that you realize that these emotional reactions are normal and experienced by many men as they move through treatment and recovery.
When to Seek Help
Sometimes, the stress of the experience can lead to intensely distressing emotions that need professional attention. Some men, as well as their spouses or partners, can experience periods of sadness or irritability, loss of interest in previously enjoyed activities, hopelessness about the future, or changes in sleep or appetite patterns. They can experience feelings of anxiety that may or may not be triggered by upsetting aspects of treatment. Again, these responses are not surprising given the difficult and often invasive nature of cancer treatments.
One question that is often asked is when to seek help for emotional issues that are interfering in some way with your life. While there are no hard and fast rules that apply to everyone, you should talk to your healthcare provider to discuss the need for a additional help if you find yourself experiencing distress that:
- Lasts 2 weeks or more, and/or
- Interferes with your ability to do key tasks at home or work
- Interferes substantially with your relationships
Psychological Support at Roswell Park
Roswell Park offers the opportunity for men and their families to meet with members of our Psychology Department who may be of assistance in helping navigate these emotional challenges.
Psychologists can meet individually with you, or with couples or family members. If you would like to meet with a psychologist, let your medical provider know, or contact the Psychology Department at (716) 845-3052.
Social Work Department
Our licensed Clinical Social Workers and licensed Masters Social Workers are available to assist you and your family members in adapting to the stresses related to your diagnosis including counseling services, support groups, health care proxy, finances, housing, transportation and community resources as well as helping you locate rehabilitation facilities. For more information on any of these services, please call (716) 845-8022.