Follow-up care after prostate cancer treatment means regular medical checkups, no matter how low-risk your tumour.  The frequency of these visits is based on your level of risk, with low-risk patients often being monitored every 3 to 6 months during the first year, every 6 months during the second to the fifth year, and once a year after that. High-risk patients usually continue with a regular follow-up appointment every 3 to 6 months.

Frequently, your treating oncologist gives follow-up care, at least initially. At some point, however, many men will be referred back to their family physician or urologist. So knowing something about the purposes of post-treatment monitoring and about how to be a proactive and responsible participant in your ongoing health care can add years to your life and help you reclaim or maintain your overall well-being.

Follow-up appointments have three main purposes:

• to check for the return of cancer (recurrence) or the spread of cancer (metastasis),
• to enable you and your physicians to identify and address any late or long-term side effects of your diagnosis or treatment, and
• to provide outcome information for your medical team and give you an opportunity to ask about lifestyle changes, current research, clinical trials, or any other information that can help you take charge of your health.

Checking for Recurrence/Metastasis
Your physicians will use various tools to check whether cancer has recurred or metastasized. The most common are the digital rectal exam and the prostate-specific antigen (PSA) test, which are also helpful in prostate cancer diagnosis.

Post-treatment PSA testing is particularly important in monitoring for what is called biochemical recurrence (BCR)---an established trend of rising PSA measurements. PSA levels should drop and stabilize after treatment, so rising PSA levels in the blood signal that cancer may be back. Remember, though, that biochemical recurrence is not the end of the line. Research indicates that, although one-third to half of patients will experience BCR during follow-up, not all go on to experience metastatic disease.  And for those men whose cancer does progress, biochemical recurrence usually predates metastatic disease by about 7 years, giving you and your team lots of time to decide upon further treatment. (For more information, see the article Approach to primary care follow-up of patients with prostate cancer.)

Maintaining Quality of Life
Some of the physical and psychosocial effects of prostate cancer and its treatment can develop months to years after treatment ends. (Ever notice the way people can get anxious or depressed after a crisis has passed?) So it is best to be upfront about all of your health concerns and questions---as soon as you experience them. Usually, help is available. And sometimes, as in the case of persistent erectile dysfunction, speedy intervention may be your best chance for improvement. Most cancer centres in Canada offer, for example,

• nutritional counselling,
• psychological counselling,
• genetic counselling,
• couples or sexual counselling, and
• physical and occupational therapy.

Your medical team can also direct you to external information or services that address your specific needs, e.g., coping with side effects such as incontinence, hooking up with a support group, or deciding upon a program of diet and exercise to help you maintain muscle mass and bone density.

Being Responsible
Many people like to put their cancer behind them, to assume that, once treatment is complete and they have returned to their “new normal,” they are cured and can forget about monitoring their health. This attitude can be particularly prevalent among men who are “problem solvers”----identify the problem, solve the problem, and that’s that. But your best chance to live long and well is to become a persistent, responsible caretaker of your own health. To do this, you should both monitor and report health changes to your follow-up team and keep track of your own health information.

Monitor and report the following:

• Any symptoms that you think might signal that the cancer has returned, e.g., unexplainable pain in the abdomen, pelvic region, or back or any difficulty passing urine;
• Any pain that is persistent and bothers you, especially bone pain;
• Unexplainable weight loss or gain or fatigue;
• Any physical problems that interfere with the quality of your life, including,
  - incontinence or other bladder or bowel difficulties,
  - sexual problems such as impotence or loss of libido, and
  - memory changes or insomnia;
• Any emotional problems you are experiencing, such as anxiety, stress, sadness, anger, or depression;
• Any medicine, vitamins, herbs, or other complementary therapies you are using;
• Any changes in your family’s medical history, especially new cases of reproductive cancers;
• Any new diet or exercise regimen; and
•  Any ongoing difficulties in your relations with your partner, family, friends, and colleagues.

Remember, the list above is general. Your own follow-up caregivers may ask you to watch out for other health changes, possibly ones that are more specific to your unique situation.

Keep records on the following:

• The dates and results of all your PSA tests, with information in this log regarding treatments or other factors that might affect PSA levels;
• Detailed information about your initial grade and stage and prognosis, including the cancer’s grade and stage, its location, and the size of your prostate upon diagnosis;
• Any relevant reports, e.g., notes regarding digital rectal exams (DREs), pathology reports of biopsies, or information on transrectal ultrasounds or bone scans;
• Information on all treatments and drugs you have been given or are currently taking, with dates and dosages listed;
• Contact information for all the people involved in your diagnosis, treatment, and follow-up care;
• Notes on side effects or complications that have occurred during or after treatment or as the result of any post-treatment therapy, and information about how these were addressed;
• Details regarding all the supportive care you have received, e.g., drugs for pain management or nausea and their effects, counselling, and nutritional and exercise programs undertaken; and
• Identifying information for any clinical trials or studies in which you have participated.

Many men believe that they will never forget a lot of this information. But after 10 or 15 years, it may be difficult to recall when you had your surgery or when you began radiation therapy---dates that you thought were etched into your mind for good.

For more information on keeping your health records, see the December 2007 Network News article entitled “Personal Health Records: Survival Tools.”