Patient's Guide to Prostate Cancer: Some Helpful Hints

The diagnosis of cancer can create intense fear and emotional upset in patients and their families, even with all of the modern advances and successes in treatment. Worries that your life may soon be over, with resulting feelings of despair and hopelessness, may alternate with a sense of urgency to do something now to get rid of the cancer. In time, becoming more knowledgeable about prostate cancer, the different treatments and also the nature of your own situation, can diminish this distress and enable you to make more informed treatment decisions.

This process is helped by support from family, friends and health care professionals, and by learning how to take charge of your treatment. Learning to live with the basic uncertainty about treatment outcome is a challenge for anyone. There are no absolute guarantees that a "cure" has been achieved, even with confirmed good findings at the time of treatment, and a number of years of being disease-free after treatment.

Your PSA level should be monitored at appropriate intervals for the rest of your life. Some men experience temporary "PSA anxiety" around the time of the tests. But many men and their families go on to live their lives without obsessive worry that the cancer may return.

A variety of sources can provide information to help you during diagnosis, treatment and after treatment, including:

Your doctors and other medical team members
Books and articles
The National Comprehensive Cancer Network's patient guidelines
The Internet

The Patient and Family Cancer Support Center at UCSF Medical Center also can assist you in this effort.

Computer access may be available at your local library, and local cancer centers may provide Internet access and have staff to assist you with your search for information. Take care to check out the credibility of the information on any particular website. See Evaluating Health Information for more pointers.

With time and information, you will be able to make well-informed decisions based on what is important to you. Most patients don't need immediate treatment and, after consultation with their doctors, may be able to safely take their time.

Getting Second Opinions

Because understanding the different treatments and then choosing among them isn't easy, getting multiple opinions may be a necessary part of your decision making. In the course of developing a treatment approach for yourself, you may consult with a urologist, radiation oncologist and medical oncologist, along with your primary care doctor and other medical specialists. Based on their training and experience, they may bring differing perspectives to the assessment of your cancer and to their treatment recommendations.

It is helpful to prepare yourself in advance for a meeting with any doctor by writing out a list of questions you want to ask, to bring along a partner or friend, and to record the discussion for future reference. See Questions to Ask Your Doctor for a list of questions that you can review and bring to your office visit.

Keeping Good Records

It is very helpful to keep a complete medical record, with copies of the laboratory work, diagnostic studies and treatment recommendations, and the treatment reports with the outcomes. This will help you get the most out of your second opinions, deal with insurance companies and play a more active role in your treatment.

Involving Your Family

Prostate cancer affects not just the patient, but family and friends as well. Keeping them informed and involving them in the decision making is helpful to everyone involved. Wives, partners and children, who may become fearful about losing a mate or parent, may not be able to express these fears directly. Keeping communication channels open and discussing fears and hopes openly can be helpful. It may be appropriate to have frank talks with adult sons — who are now shown to be at greater risk for developing prostate cancer — about risk reduction measures.

In some instances, the wife or partner may become the more active person in getting information about the disease, arranging for and participating in medical visits, and supporting continued action and decision making.

Since the treatments for prostate cancer can significantly affect sexual drive and functioning, changes in the nature of the sexual relationship may need to be made over time to keep the relationship mutually satisfying for both partners. Men often overestimate their partners' need for frequent sexual intercourse, as compared with other means of showing love and physical closeness. This is a time when men often become more aware of what is important to them, what contributes to a good quality of life and the value of relationships with family and friends.

Joining a Support Group

A support group can be of great help to a man with prostate cancer, both before and after treatment. A number of studies have shown the value of support groups in helping with decision making, enhancing quality of life and possibly in prolonging life.

Being with other men with prostate cancer who have been successfully treated can be tremendously reassuring. Hearing how others went through the decision making process, what their actual experiences were and how they coped with the consequences of their treatment also can be helpful. This also applies to men whose initial treatment has failed or who are dealing with recurrence of their cancer.

Many support groups enable wives to participate, and to have their own meetings. The local office of the American Cancer Society is a good source of information about support groups in your area, as is the Patient and Family Cancer Support Center at UCSF Medical Center.

It is important to recognize that everyone copes differently and benefits from different types of support. To the extent possible, be aware of what feels most supportive to you. Try to incorporate activities and people that bring you a sense of joy, peace and healing. This may mean joining a support group, spending more time with family, seeking individual counseling or spending time alone in nature.

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UCSF Health medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your provider.