MPower Prostate Cancer Registry

The MPower project collects statewide data on trends in patient experiences by asking questions about prostate cancer diagnosis, treatment and quality of life. We hope to better understand the experiences of men diagnosed with prostate cancer, in order to provide better overall treatment.

Why Build a Registry?

Prostate cancer is the most common solid tumor and the second-leading cause of cancer death among U.S. men. While surgery, radiation and active surveillance are all appropriate treatments for men with prostate cancer, we still have a tremendous amount of uncertainty about the most effective therapies.

Patients, families and clinicians often lack the information they need to make the best choices for treatment. A registry of patient information provides the data needed to educate patients, inform decision-making and assist in finding a cure.

Helping Make Connections

Prostate cancer support groups are an important community resource to help with decision making, health navigation and emotional support. Many men find their support groups to be a very valuable and unbiased source of information from those who have gone through cancer themselves.

If you live in Washington State, visit the Washington State Prostate Cancer Coalition to find a support group near you.

Join the Registry

Share your experience and help advocate for the needs of patients across the country. The survey includes questions about family history, lifestyle, clinical diagnosis, treatment, side effects and quality of life.

Once you’re in the registry, you can compare your experience with the MPower prostate cancer patient community.

Your survey responses will be stored securely and your information will remain private.

Ask a Doctor

  • About the Doctors
  • Advanced Disease
  • Nutrition
  • Prevention
  • Screening
  • Survivorship
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Nutrition
Prevention
Screening
Survivorship

Our experts answered the questions they hear most about prostate cancer, prevention, screening, nutrition and treatment options.

The information provided here is general in nature and should not be construed to be medical advice for specific health conditions or a substitute for professional medical care. If you have, or suspect you may have, a health problem, you should consult a licensed health care provider.

Michael Schweizer, M.D.

Michael Schweizer, M.D.

Dr. Schweizer cares for patients with prostate, testicular, kidney and bladder cancers. His research focuses on translational genitourinary cancer and novel therapeutics/drug development. He is an assistant professor of Medicine and Oncology at University of Washington School of Medicine and assistant member in the Clinical Research Division at Fred Hutch. 

Marian Neuhouser, Ph.D., R.D.

Marian Neuhouser, Ph.D., R.D.

Dr. Neuhouser's research focuses on diet and physical activity in relation to energy balance and cancer risk, specifically of the breast and prostate. Her research projects include both observational and intervention studies. She is also working on ways to improve methods of diet and physical activity assessment, and the extent to which biological markers can improve upon measures of self-report.

Ruth Etzioni, Ph.D.

Ruth Etzioni, Ph.D.

Dr. Etzioni focuses on innovative statistical and computer modeling to project the outcomes of cancer control interventions in an effort to develop a deeper, more mechanistic understanding of cancer progression. Her projects include interrogating trends in prostate cancer in the U.S. population to quantify the roles of treatment changes, interpreting the results of the large prostate cancer screening trials, and generating unique insights about prostate cancer natural history and over-diagnosis due to PSA screening. 

Jonathan Wright, M.D.

Jonathan Wright, M.D.

Dr. Wright specializes in urologic oncology, treating bladder, prostate, kidney, penile and testicular cancers. He studies the epidemiology of prostate cancer risk, progression and genetics. His specific research interest is in the role of obesity and nutrition in prostate cancer. Dr. Wright is a surgeon at UW Medical center and clinician at the UW Neighborhood Factoria Clinic in Bellevue. He also teaches surgical skills, interpersonal skills at the bedside and developing the research concepts. 

John Gore, M.D.

John Gore, M.D.

Dr. Gore is a clinician, surgeon, researcher and educator specializing in urologic oncology and general urology. His research focuses on studying issues of access to care and quality of care for patients with prostate and bladder cancers. He is recognized for minimally invasive and robotic surgeries for kidney cancer, nephrectomy with vena caval thrombectomy, continent urinary diversions after removal of the bladder for bladder cancer and reconstructive urologic surgery.

Dr. Michael Schweizer

Advanced Disease Questions, Answered by Dr. Michael Schweizer

Dr. Schweizer cares for patients with prostate, testicular, kidney and bladder cancers. His research focuses on translational genitourinary cancer and novel therapeutics/drug development. He is an assistant professor of Medicine and Oncology at University of Washington School of Medicine and assistant member in the Clinical Research Division at Fred Hutch.

What is advanced prostate cancer?
This is a somewhat broad term. I consider a patient to have “advanced prostate cancer” once their disease has progressed to a systemic, incurable state. This could range from biochemical recurrence following local treatment (i.e., PSA elevation as the only manifestation of disease) to diffusely metastatic castration-resistant disease.

What are the treatment options for advanced prostate cancer?
Androgen deprivation therapy (ADT) (i.e.,GnRH analogs); first generation anti-androgens (bicalutamide, nilutamide, etc.); next generation AR-directed agents (enzalutamide, abiraterone); chemotherapy (docetaxel, cabazitaxel); radiopharmaceuticals (Ra-223; samarium, etc.); immunotherapy (sipuleucel-t); and clinical trials involving experimental agents.

What are the common side effects for each treatment?
Any drug targeting the Androgen Receptor-axis (i.e., ADT, AR-antagonists, etc.) will result in a similar constellation of side effects. These include: hot flashes, loss of muscle mass, decreased bone health, decreased energy, breast tenderness/swelling, weight gain, increased risk of cardiovascular disease and increased risk of other metabolic derangements (e.g., diabetes).

Abiraterone can cause electrolyte disturbances, liver test abnormalities and edema. Enzalutamide has been associated with rare seizures. Taxane (i.e., docetaxel, cabazitaxel) can result in decreased blood counts, increased risk of infections (potentially life threatening), fatigue, neuropathy (numbness, tingling or burning) of the hands and feet, loss of appetite, edema and hair loss. Radiopharmaceuticals like Ra-223 mostly affect the blood cell counts, but can also cause some GI side effects. Sipuleucel-t is generally well tolerated. It can cause flu like symptoms around the time of the infusion (fevers and chills).

What are your recommendations for reducing or minimizing side effects?
Since all of the drugs affecting the AR-axis can increase the risk of cardiovascular disease, it is important to engage in aerobic exercise and eat a healthy diet. Working out with weights can also be helpful to combat the associated loss in muscle mass. Nothing has been shown to be very effective at controlling hot flashes. These do, however, typically get better over time. Keeping a fan on when you sleep can be helpful.

What can I do to maintain bone health in advanced prostate cancer?
Take vitamin D and calcium supplements. Weight bearing exercise can also be helpful. If you have more advanced prostate cancer, sometimes bone strengthening drugs are used to decrease the risk of fractures.

Are there dietary changes that I could or should make to optimize my treatment?
I typically recommend a heart healthy diet.

Should I consider joining a clinical trial?
Yes, this is the only way that new, better treatments are discovered.

Dr. Marian Neuhouser

Nutrition Questions, Answered by Dr. Marian Neuhouser

Dr. Neuhouser's research focuses on diet and physical activity in relation to energy balance and cancer risk, specifically of the breast and prostate. Her research projects include both observational and intervention studies. She is also working on ways to improve methods of diet and physical activity assessment, and the extent to which biological markers can improve upon measures of self-report.

What are the foods I should avoid?
Try to avoid foods that have a lot of added sugars, sodium (salt) and fats (such as butter and oils). Consume these in moderation or save for special occasions.

What are the foods I should make sure I have in my diet?
Fruits, vegetables, whole grains and lean protein. Fill up your plate with as many colors as possible. Protein includes legumes, beans such as kidney beans and garbanzo beans as well as lean meats.

Can I drink coffee/tea?
It is fine to drink coffee and tea.

Should I eat soy?
Soy foods are safe to eat. Soy is a healthy source of protein. However, stay away from soy supplements, including powders and pills.

Should I take a multivitamin?
Most people do not need to take a multivitamin. Make sure that you eat several servings of fruits and vegetables each day as well as whole grains and lean protein. Try to keep sweets and added sugars to a minimum.

Should I avoid selenium/vitamin E?
Natural sources of selenium and vitamin E from foods are fine. Avoid dietary supplements with selenium or vitamin E, which have doses that are too high. Especially those that contain only selenium or vitamin E.

Should I avoid alcohol?
Drink no more than one to two drinks per day.

Should I take saw palmetto?
There is not enough evidence to support benefits for prostate cancer.

Should I take Super Beta Prostate?
This has not been tested in scientific studies; there is not enough evidence to support benefits for prostate cancer.

Dr. Jonathan Wright

Advanced Disease Questions, Answered by Dr. Jonathan Wright

Dr. Wright specializes in urologic oncology, treating bladder, prostate, kidney, penile and testicular cancers. He studies the epidemiology of prostate cancer risk, progression and genetics. His specific research interest is in the role of obesity and nutrition in prostate cancer. Dr. Wright is a surgeon at UW Medical center and clinician at the UW Neighborhood Factoria Clinic in Bellevue. He also teaches surgical skills, interpersonal skills at the bedside and developing the research concepts. 

What are the best things I can do to reduce my risk of prostate cancer?
The best way to reduce your risk of prostate cancer is to maintain an active lifestyle, healthy weight and well-balanced diet. There are data showing that 5-alpha reductase inhibitor (finasteride, dutasteride) use is associated with an approximately 25% reduction in the risk of prostate cancer compared to placebo. These medications also improve urinary symptoms in men with benign prostatic hyperplasia (BPH) and are a treatment for male pattern baldness. However, it was also observed that in those who develop prostate cancer, there was more high-grade prostate cancer. This is in addition to potential side effects of these medications (erectile dysfunction and gynecomastia). As a result, these medications are not approved by the FDA for prostate cancer prevention, owing to concern about these risks. Talk to your doctor about whether these medications are right for you.

How much exercise should I aim to get every day?
The exact type and amount of exercise to do is unknown. A good rule of thumb is 30 minutes a day, 5 times a week of vigorous physical activity. This can include running, walking briskly up a hill, fast cycling, aerobics, competitive sports and games. Data from studies have found than men doing this level of weekly activity had a significantly reduced risk of advanced or aggressive prostate cancer.

Are there any supplements I should take?
At present, there are no recommended supplements for prostate cancer progression. Studies of vitamin E, selenium, vitamin C and beta-carotene have not demonstrated a risk reduction for prostate cancer. Cruciferous vegetables (such as broccoli and Brussels sprouts) have been associated with a reduction of prostate cancer risk. These associations have not been proven.

Are there any foods I should avoid?
Eating a well-balanced, healthy diet with all food groups represented is important. Many of the items that are “heart healthy” are also “prostate healthy.” There are some data that eating too much red meat, especially overcooked red meat, may increase your risk of prostate cancer. Further, there are also suggestions that fried food may increase the risk of cancer. These are not proven associations.

Are there any behaviors I should avoid?
Avoid tobacco. Maintain a healthy weight. Limit alcohol. Obesity has been associated with aggressive and fatal prostate cancer.

Dr. Ruth Etzioni

Advanced Disease Questions, Answered by Dr. Ruth Etzioni

Dr. Etzioni focuses on innovative statistical and computer modeling to project the outcomes of cancer control interventions in an effort to develop a deeper, more mechanistic understanding of cancer progression. Her projects include interrogating trends in prostate cancer in the U.S. population to quantify the roles of treatment changes, interpreting the results of the large prostate cancer screening trials, and generating unique insights about prostate cancer natural history and over-diagnosis due to PSA screening.

Should I be screened for prostate cancer? If so, how often?
There is no single answer to this question. Without screening, a man’s chance of dying of prostate cancer in his lifetime is approximately 3 percent. With screening, based on the most optimistic interpretation of the available data, this risk goes down to about 2.2 to 2.4 percent. Because of the controversy about prostate cancer screening, men often think that prostate cancer is more of a threat to their health than it actually is. Men should consider their risk of prostate cancer death in the context of their general health. If their objective is to improve their health and lengthen their lives, there will likely be many other things that they can do that will have known benefits, like exercise, improving diet, and reducing stress. If men decide to have a prostate cancer screening test, then they should understand that the test may detect a cancer that does not need to be treated. Men should not be tested if they are unwilling to consider not being treated, should they be diagnosed with a low-risk lesion.

Regarding the best interval for testing, it seems clear that men can be tested every couple of years or every few years and they will benefit almost as much as being tested every year (but will be more likely to suffer the harms of screening).

What are the various prostate cancer screening options?
Currently, PSA testing is the primary option. Digital rectal exam is also used, but PSA is really the main test.

What should I do if prostate cancer is found?
Don’t panic. Learn about whether your cancer is low- or high- risk. Consider your age and your general health. If you have other health conditions like hypertension or a history of cardiac disease and you have low-risk prostate cancer, you may want to focus on these other conditions and improving them rather than worrying about your prostate cancer because if it is low-risk, then it is unlikely to threaten your life expectancy.

What is watchful waiting and active surveillance? Is this a good option for me?
Watchful waiting is a very low-intensity monitoring program which consists of doctor visits and PSA testing to make sure that your cancer is not progressing. Active surveillance is similar but includes regular biopsies of your prostate to obtain more information on the state of your cancer. In either case, if there is a change that suggests your cancer is growing or getting more aggressive, you will be offered the option of treatment. Our research indicates that in the case of low-risk tumors the resulting delay in receipt of treatment has a very minor effect on the chance that you will die of prostate cancer which is extremely low anyway.

What are the benefits of PSA screening? What are the potential harms?
In certain cases, PSA screening can enable prostate cancer to be diagnosed earlier, thereby permitting curative treatment to be administered. In these cases, it is likely that PSA screening saves lives. But even according to the most optimistic interpretation of the data, these cases will only consist of 6 to 8 men per 1000 men screened. The harm of most concern is that the test will detect an inconsequential cancer, leading to unnecessary treatment with all its costs and side effects. Prostate cancer treatment can lead to incontinence, impotence and bowel problems, so it is not something to be taken lightly. A prostate cancer case will always find a doctor willing to treat him but this does not mean that the treatment is going to be beneficial or even that it is needed. Our research suggests that of every 1000 men screened, about 30 to 40 will have an inconsequential cancer diagnosed. Even more will have a false positive test, which is an elevated PSA that is followed by a negative biopsy. Therefore, screening has harms as well as potential benefits.

What about the U.S. Preventive Services Task Force screening recommendations?
The USPSTF recommendations were based on a very pessimistic view of the available data including considering the results of the US prostate cancer screening trial as validly representing the benefits of screening versus no screening. It is clear from extended follow-up of the European trial and from USA population mortality trends that PSA screening does save lives. We feel that continuing to offer PSA screening in ways that reduce harms and encouraging men detected with low-risk disease to manage their diagnosis conservatively should help to preserve the benefits while reducing the costs. But this requires men to recognize that most prostate cancers are not fatal and that the risk of prostate cancer death without screening is low and to make a properly informed decision about how best to manage their prostate cancer risk in the context of their general health.

Dr. John Gore

Advanced Disease Questions, Answered by Dr. John Gore

Dr. Gore is a clinician, surgeon, researcher and educator specializing in urologic oncology and general urology. His research focuses on studying issues of access to care and quality of care for patients with prostate and bladder cancers. He is recognized for minimally invasive and robotic surgeries for kidney cancer, nephrectomy with vena caval thrombectomy, continent urinary diversions after removal of the bladder for bladder cancer and reconstructive urologic surgery.

What happens to my quality of life after my treatment for prostate cancer?
The impact of prostate cancer treatment on your quality of life depends on the type of treatment and the severity of your cancer. In general, treatment for localized prostate cancer that is confined to the prostate impacts your urinary function, bowel function and sexual function. Most studies of quality of life in localized prostate cancer show minimal impact of treatment on general physical or mental health. The urinary problems men face after prostate cancer treatment range from urinary incontinence, or leakage of urine, to difficulty emptying urine from which patients experience increased frequency of urination, or urgency where one feels a rush to get to the bathroom. Urinary incontinence is more common after surgery with a radical prostatectomy. Emptying problems are more common after radiation. Sexual function is impacted because the erection nerves pass alongside the outer border of the prostate. And bowel function is impacted—most commonly by radiation therapy—because the rectum passes immediately behind the prostate. These areas of quality of life are more affected in men with more severe cancers, because the surgery may need to involve removal of the erection nerves, or the radiation field may need to be broader and cause more of an innocent bystander effect to the bladder or rectum.

How do I make sure the cancer does not come back?
The definition of cancer coming back, or recurrence, is based on the results of the prostate-specific antigen (PSA) test. A rising PSA after surgery or radiation therapy for prostate cancer usually indicates that the cancer has come back. The best way to monitor for a recurrence is to maintain follow up visits with your prostate cancer doctor at which time the PSA checks are usually scheduled.

Patients often ask about lifestyle changes they can make to try to keep their cancer from recurring. In general, we advocate regular exercise, maintenance of a low-fat high fiber diet and smoking cessation among active smokers.

How do I manage side effects?

  • Erectile Dysfunction/Impotence
    Erectile dysfunction (ED) may respond well to different therapies and so one important aspect of managing ED after prostate cancer treatment is informing your prostate cancer doctor about your concerns. The options for management of ED include pills, the best known of which is Viagra, urethral suppositories, injections into the penis, vacuum devices to pull blood into the penis and even surgery to place a prosthesis into the erection tubes. Your prostate cancer clinician can review these options with you to identify the best strategy that matches your concerns.
  • Incontinence/Urine Leakage
    Urinary incontinence is most common after surgery to remove the prostate with a radical prostatectomy because the sphincter muscle sits close to the end of the prostate. One of the best treatments is time and patience, because most men continue to recover their continence up to two years after surgery. Most men also benefit from learning to do Kegel exercises to strengthen their pelvic floor muscles. In extreme cases, men may need surgery because these behavioral management strategies do not help enough, and in these cases your prostate cancer clinician can review your options. Some surgical options you may have heard about include the male sling or the artificial sphincter.

How often should I see my doctor?
The frequency of visits for prostate cancer patients depends on the stage of cancer you have and the treatment you are receiving. For men who were treated for localized prostate cancer with surgery to remove the prostate (radical prostatectomy) or radiation therapy, guidelines recommend that you have a PSA checked every 6-12 months. A common schedule is to have patients return to clinic every three months with a semiannual PSA check for the first two years after surgery or radiation therapy. That also provides for an opportunity to discuss any bothersome side effects of treatment that you may be experiencing, such as urinary incontinence or problems with erections. For patients with more advanced prostate cancer, the visits and the monitoring are usually more frequent.

What are your recommendations for maintaining health after cancer?
Prostate cancer can be a distracting diagnosis. What I mean by that is that a prostate cancer diagnosis can lead patients to forget about maintaining the other aspects of their health. Importantly, most men with prostate cancer die of other health problems, and the most common of these is cardiovascular disease. So regular checkups with your primary care doctor are critical to staying up-to-date with your preventive care, like getting regular lipid panel checks, blood pressure measurements, screening for other cancers such as colon cancer, and influenza and other vaccines. Exercise and a heart healthy diet are also important to maintenance of a healthy lifestyle.

What symptoms should I watch out for, which may mean my cancer has returned?
Usually, among patients that underwent surgery or radiation therapy for localized prostate cancer, the first sign that the cancer has recurred is that the PSA blood test begins to rise. After surgery, the American Urological Association (AUA) definition of a recurrence is a PSA rise to above 0.2ng/mL that is confirmed on a second measurement. After radiation therapy, the American Society of Therapeutic Radiation Oncology (ASTRO) defines a recurrence as a rise of at least 2ng/mL after the PSA has reached its lowest level. In the overwhelming majority of patients with a recurrence after surgery or radiation, there are no symptoms beyond the abnormal blood test. This highlights the need to be vigilant with regular checkups with your prostate cancer doctor for PSA tests.

Have a question you don’t see here?

Project Partners
 

Washington State Prostate Cancer Coalition (WSPCC)

WSPCC addresses the need for enhanced awareness and advocacy of prostate cancer in Washington State and brings together prostate cancer survivors, families, healthcare providers and employer groups.

Hutchinson Institute for Cancer Outcomes Research (HICOR)

HICOR brings together cancer-care providers, patients and other organizations to integrate cancer-related data, investigate trends and identify the most effective treatments and approaches.

Institute for Prostate Cancer Research (IPCR)

IPCR facilitates research and clinical collaborations between Fred Hutch and UW Medicine to understand the causes of prostate cancer and its progression, develop new prevention strategies, devise innovative diagnostics and improve survival and quality of life.

Confluence Health

Confluence Health is an affiliation between Central Washington Hospital and Wenatchee Valley Medical Center that is dedicated to patients' health by providing safe, high-quality care in a compassionate and cost-effective manner.

Contact MPower