Be Informed


NOTE
Information at this website is not intended as medical advice. Always check with your care provider, urologist, oncologist or surgeon before considering any change or modification to your approved treatment, activity or diet. Some Internet links and 'tips' seen here are anecdotal suggestions from other prostate cancer survivors.

A diagnosis of prostate cancer can be overwhelming for sure. However, on the plus side, you are not alone. In Rochester and the Finger Lakes region thousands are affected by prostate cancer. The good news is there are more treatment options available today than there were even 5 years ago, and new research efforts continue worldwide. There is also an abundance of information available on the Internet that may help guide decisions about prostate health.The National Cancer Institute at the National Institutes of Health provides a thorough list of topics related to prostate cancer diagnosis, staging, treatment and new research. Click HERE to go there now. Throughout this page, there are embedded links to other Internet websites. Those websites are solely responsible for the information they provide. The links are for your convenience only to see more information on the specific topic. Links are color 'teal' and underlined. (Be sure to check out the list of questions provided below.)

SCREENING & DIAGNOSIS: Today, in addition to a PSA screening test, there are additional genetic and biomarker tests that may help determine certain cancer types and whether treatment should be considered sooner or later, or if active surveillance is an option. NOTE:  Always, GET 2nd OPINIONS!
RESULTS:
TREATMENT: Today, there exists many treatment strategies for prostate cancer. However, every diagnosis is unique to the individual. Your treatment decision should reflect personal research efforts and multiple discussions or agreements with medical providers or subject matter experts. Remember to always seek a 2nd opinion before making your final decision and check with your medical insurance to learn what is covered and what payments will be expected. When selecting an option, you may also want to consider 'how many visits are required' and is a 'copay' expected at each visit. For example, some external radiation options may require 6 or more weeks of daily treatment visits. If a $20 copay is expected each time, you would want to plan finances accordingly.

Some treatment options follow. Many of these options are performed in Rochester or the Finger Lakes region. Some may be considered experimental or not standard care; and others may require travel. In some cases, mutliple treatments may be suggested by your provider.
IMPORTANTWhile radiation may be an option following surgery, surgery may be complicated and no longer an option following radiation. 
  1. IF/WHEN you consider surgery, always inquire about the 'nerve-sparing' process!
  2. BEFORE you decide which treatment is best for you, always inquire about 'penile rehabilitation'!
  3. LODGING: get huge discounted rates when treated for cancer in cities outside of Rochester: click HERE
SIDE EFFECTS: Just as a treatment decision depends on a number of variables about the individual patient, so too is the potential for side-effects. Amazingly, some persons report no long lasting side effects following surgery or following radiation! Some of the most common side-effects of surgery and/or radiation may include urinary incontinence and/or erectile dysfunction. These may be temporary or long lasting and the intensity varies for each patient. More information can be found at the websites below:
  • Penile Rehabilitation Therapy - Everyone affected by prostate cancer may want to review this video by Dr. John Mulhall of Memorial Sloan Kettering Cancer Center and have a discussion about penile rehab with your surgeon, oncologist or medical provider that includes your wife, life partner or significant other.
  • Urinary incontinence (stress vs urge) (often treatable, and very often resolves over time)
  • Kegels & Trigger-Training:  Note:  Do NOT do Kegels while you have a catheter in place! 
  •  Bladder Training: Pay attention to what causes you to leak or feel 'urge' to urinate; usually coughing, sneezing, passing gas, lifting or carrying objects, stooping, changing position, opening/closing heavy doors or drawers, touching cold metal objects, hearing water flow, hugging another person... etc.. THEN TRAIN YOUR BRAIN to kegel your pelvic floor prior to performing those trigger-actions!). This process of identifying the triggers and training the brain to kegel takes time.Think of the pelvic floor muscle as a 'bicep'. Just as biceps get bigger and flex harder against a shirt sleeve when they've been exercised routinely, so too the pelvic floor muscle can get 'bigger' and will flex 'harder' against the male urethra when kegel exercises are performed routinely. Doing kegels at the 'right times' becomes a secondary process when done routinely, and is a life-long commitment-to-self following treatments for prostate cancer. A strong pelvic floor muscle can 'squeeze' the urethra when needed and thereby help to control urine leakage.
  • Erectile dysfunction (often treatable) (may depend on multiple factors including age, libido prior to and following treatment, and the 'nerve-sparing' process during surgery)
  • Vacuum Pumps: One effective vacuum pump recommended by a chapter member is less expensive than others he has used, and is manufactured by Revive Premium.
DRUGS & IMPLANTS: The following links identify some of the current medications and surgical options.

MORE BACKGROUND

THE PROSTATE: The prostate is a gland in the male reproductive system. It lies just below the bladder (the organ that collects and empties urine) and in front of the rectum (the lower part of the intestine). It is about the size of a walnut and surrounds part of the urethra (the tube that empties urine from the bladder). The prostate gland makes fluid that is part of the semen.

PROSTATE CANCER: Prostate cancer is cancer that affects the prostate gland — a small walnut-shaped gland that produces the seminal fluid that nourishes and transports sperm. Prostate cancer is one of the most common types of cancer in men. Prostate cancer usually grows slowly and initially remains confined to the prostate gland, where it may not cause serious harm. While some types of prostate cancer grow slowly and may need minimal or no treatment, other types are aggressive and can spread quickly. Prostate cancer that is detected early — when it's still confined to the prostate gland — has a better chance of successful treatment. Prostate cancer may affect anyone born male with a prostate, including persons who identify as transgender women or gender dysphoric.

RISK CATEGORIES: Those who may be at greater risk for prostate cancer include:

  • Men over age 50 [and transgender women]
  • African American men, over age 45 [and transgender women]
  • Men with a family history of prostate cancer (father, grandfather, uncle, brother)
  • Military men exposed to Agent Orange
  • Men who are taking testosterone supplements.

POTENTIAL SYMPTOMS: Unfortunately, there are no symptoms specific to early stage prostate cancer. Many men have no symptoms but may have aggressive prostate cancer. Conversely, not all men with symptoms have prostate cancer. These and other signs and symptoms may be caused by prostate cancer or by other conditions. Check with your doctor if you have any of the following:

  • Weak or interrupted ("stop-and-go") flow of urine.
  • Sudden urge to urinate.
  • Frequent urination (especially at night).
  • Trouble starting the flow of urine.
  • Trouble emptying the bladder completely.
  • Pain or burning while urinating.
  • Blood in the urine or semen.
  • A pain in the back, hips, or pelvis that doesn't go away.
  • Shortness of breath, feeling very tired, fast heartbeat, dizziness, or pale skin caused by anemia.
Other conditions may cause the same symptoms. For example, as we age the prostate may get bigger and block the urethra or bladder. This may cause trouble urinating or sexual problems. The condition is called benign prostatic hyperplasia (BPH), and although it is not cancer, surgery may be needed. The symptoms of benign prostatic hyperplasia or of other problems in the prostate may be like symptoms of prostate cancer.

PREVENTION: While no one knows what exactly causes the prostate gland to develop cancerous tissue, many authorities and long-term patients seem to agree that 'diet', 'cholesterol' and 'exercise' play an integral role. Here's a few items some of our chapter members would like to share. Of course, discuss your diet and exercise regimen with your medical provider first, and we encourage readers to do their own research:
  • Vegan diet lowers risk of prostate cancer: HERE 
  • Vegan/vegetarian diet protective for some types of cancers: HERE
Also:

EARLY DETECTION IS KEYProstate cancer is highly treatable. Left untreated, aggressive prostate cancer may metastasize to other locations, sometimes as bone, liver, kidney or lung cancer. While there are often no symptoms during its earliest formation, there are methods that help determine if cancer exists on the prostate gland. Some methods include a physical history with your provider, a digital rectal exam(DRE), a blood test for prostate specific antigen(PSA), an MRI, ultrasound, and/or a biopsy. Very often a DRE and a PSA blood test are the easiest and least expensive tools that help a specialist begin to determine if additional tests are required. Men need to be their own best health advocate and request to be screened.

 

MEDICAL PROVIDERS
  • UROLOGISTS: Click HERE
  • RADIATION ONCOLOGISTS: Click HERE
  • MEDICAL ONCOLOGISTS: Click HERE

GLOSSARY: Click HERE



DISCLAIMER: Internet links provided on this page were randomly selected for the respective topic and are not a recommendation nor endorsement of any agency or resource. Information is provided to  help those affected by prostate cancer be informed about treatment options or provide them with a means of knowing what questions to ask of their medical provider. Since the Rochester chapter began (November 2012) fellow survivors of prostate cancer report 'tips' that some say have helped them in a variety of ways. Their anecdotal information is also included here but is not researched, per se. It is offered in an effort to make their ideas, thoughts, and/or solutions known.