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Victor Post
  • PATRICK FISHER: Peer prostate cancer support is needed

  • A kickoff for a local chapter of the Us TOO International support group for men with prostate cancer will be Tuesday, Nov. 13, at Shadow Lake Restaurant, 1850 Five Mile Line Road, Penfield.

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  • According to the National Cancer Institute, in the United States the number of men with a history of prostate cancer is nearly double the combined numbers of women with a history of ovarian cancer and men or women with a history of lung cancer. Prostate cancer continues to rank second as the cause of cancer-related deaths among men in the United States and industrialized countries; and disproportionately affects African Americans. Further, it is no secret the prevalence of prostate cancer is expected to rise with the number of male “baby-boomers” advancing to become senior citizens and increasing longevity worldwide.
    Finding ways to prevent this disease, slow its progression and support local survivors in a safe, friendly and supportive environment is more important than ever. However, peer-driven support systems dedicated solely to men surviving prostate cancer outside the clinic setting in Rochester and Monroe County are non-existent. Peer-driven support systems are independent of sponsor organizations that may inhibit attendance by those in need.
    Us TOO International Inc. is a global not-for-profit organization dedicated solely to awareness, education and support for men surviving prostate cancer with chapters already located in Buffalo, Batavia, Southern Tier, and NYC.  Now, two Rochester men hope to establish a Rochester chapter but need your help to reach those who may benefit most.
    One might ask “What does a motorcycle enthusiast and an HIV/AIDS activist-turned-flower gardener have in common?” and the typical answer might be “absolutely nothing!" However, prostate cancer bonded two Rochester men as they channeled their combined energies. At ages 50 and 60 the phrase “you have prostate cancer” were words neither Rodney nor Patrick ever expected to hear. Yet, with caring life partners at their sides, each worked through their individual stages of fear, denial, bargaining, resentment, anger, and may still be working toward “acceptance.”
    Through it all, however, there were many times each felt they could have benefited by a listening ear from other survivors. Oh sure, they received all the correct medical advice from their respective urology centers, and were thankful to have their guidance; and both are indeed grateful to be alive, but it would have been a comfort to hear from other men along the way who had similar experiences and fears.
    Several months and years later, Rodney and Patrick discovered Us TOO International — an organization of support for like-minded men and their significant others being challenged by prostate cancer. Now, it’s a shared goal for these two men to see a local Chapter of Us TOO International located right here in Rochester NY.  They hope a local chapter will unite a diverse group of caring, like-minded people whose only goal is to help one another survive the affects of prostate cancer and live a healthy, productive life. A chapter whose mantra may become:  “Prostate cancer doesn’t discriminate. Neither do we.”

    But starting a chapter for people whose lives are affected by prostate cancer and attracting a following is daunting. Two men can't accomplish this alone. HIPPA laws prevent medical providers from sharing names of patients, so reaching the population of men who may benefit by mutual support systems requires a lot of leg-work. New support groups depend almost totally on ‘word of mouth’ for their existence to reach the ears and hearts of potential members. Yet, without community support from those whose lives are affected by this disease, there will be no change in the current lacking of independent support for the thousands of prostate cancer survivors in Rochester and Monroe County.

    Even more importantly, at a time when the baby boomers are aging toward senior citizenship which may increase the future prevalence of prosate cancer, the simple blood test known as the ‘PSA’ test is threatened. The PSA test looks for prostate-specific antigens in the blood as a possible early indicator of prostate cancer or other health conditions in men. The test has aided early detection of prostate cancer in men the world over for decades. However, the United States Preventative Services Task Force (USPSTF) made a final recommendation in 2012 against prostate-specific antigen (PSA) based screening for healthy men, asserting that there is “moderate or high certainty that the service has no benefit or that the harms outweigh the benefits...” and discouraged use of the test by issuing it a Grade D rating. The rating applies to men of all ages. Now, it is feared the rating may influence Medicare and private health insurors to not pay for PSA testing as a means of early detection for prostate cancer in men. Community wide understanding of the ruling and how it may impact early detection is needed. When compared to mammograms in women for early detection of breast cancer, it seems unethical to change a direction that has merit for saving lives.

    Page 2 of 2 - A local event has been scheduled for Tuesday, Nov. 13 in Penfield, where Dr. Hani Rashid from the urology group at the University of Rochester Medical Center will discuss the pros and cons of PSA testing and the USPSTF decision; Holly Anderson, executive director of the Breast Cancer Coalition of Rochester, will speak about the proven benefit of support groups for women surviving cancer; and Bill Krellner will identify the successes of The Us TOO chapter which he leads in Buffalo. Seating is limited. Advance registration to attend this FREE event is encouraged.
    For more information, or to register to attend, call or text (585) 709-9971 and leave a message for Patrick. By email, send a message with any questions to: UsTooRochesterNY@gmail.com and indicate how many persons will attend. This meeting will begin promptly at 7 p.m. Tuesday, Nov. 13 at Shadow Lake Restaurant, 1850 Five Mile Line Road, Penfield; and will be preceded by a brief networking session and wine-tasting at 6:30 p.m. This meeting is made possible by American Medical Systems and Dash-for-Dads Rochester.
    Patrick Fisher is program manager for Us TOO Rochester NY.

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