Since 1998, the Man-to-Man Prostate Cancer Support Group in The Villages has met to provide positive support for a wide variety of patients — ranging from the newly diagnosed to those at advanced disease stages. The group is objective and positive in its goals. It’s not about sharing woe — it’s about sharing information resources and personal experiences so members can learn from each other. Helpful speakers from medicine and nutritional therapy are invited to share expert points of view about diagnosis methods and treatment modalities .
This past week, well-known medical oncologist, Maen A. Hussein, spoke to the group about future trends in prostate cancer care and state-of-the-art therapies now being used to improve quality of life and patient survival rates .
A key learning from Dr. Hussein’s pleasant, to-the-point, talk is that there is hope — now and in the future — a message the men gathered in the room, and their wives/partners, wanted to hear.
Hussein spoke about clinical trials, called “signature trials” — in which patients with advanced stages of prostate cancer are all given active drug — none of the patients are given inert placebos for testing purposes — with increasingly positive results. He also predicted a steady stream of new medicines will be approved from the current clinical trial pipeline in the coming years which will hopefully yield an increasing number of success stories.
“We will all die one day,” Dr. Hussein said matter-of-factly, “and most men will die WITH their prostate cancer — not FROM their prostate cancer. We have many more options today, and better tolerated therapies than we had five, ten or twenty years ago. Doctors used to prescribe chemotherapy for stage four cancer only AFTER patients had courses of hormonal therapy. Now, many go directly to chemo.”
He said every prostate cancer patient needs to know his name, address, Social Security number and his Gleason Score.
“Over the past five or six years, there has been a plethora of new treatments aimed at men with metastatic cancers [which have spread from the prostate to the bone and/or other areas of the body]. Medical oncology is becoming so complex, fewer urologists are choosing to treat many prostate cancer patients themselves — they often refer the patients to cancer specialists earlier.”
Dr. Hussein’s advice is for each patient to consult with both a surgeon and a radiation oncologist — to discuss available procedures and treatments, and the consequences and side effects/probable outcomes of each — and decide for himself the course of action they want to take. “Ask the surgeon what surgery can offer that’s better than radiation,” Dr. Hussein suggested, “and ask the radiation oncologist what s/he can offer that is better than surgical options. Do research with reliable sources, and become well educated on the subject.”
Dr. Hussein mentioned drugs that are approved for other diseases are being tried ‘off label’ in cancer therapy, with some seemingly good results. A relatively new pathway is to look at genetic mutations, and prescribe therapy to repair the anomaly — which can bring positive effects — not only for prostate cancer, but for wherever the disease is in the body. Another major approach includes efforts to enhance our immune systems, to prevent and combat cancers.
The group has several knowledgeable facilitators. Dan Bard, an 18-year prostate cancer survivor, recommended an easy-to-read book: ‘Invasion of the Prostate Snatchers’ by Ralph H. Blum and Mark Scholz, MD, as a good primer. He also mentioned a new Gold Standard device for ultrasound prostate tumor screening. Facilitator Vince Felton invited members to share personal stories about scans, biopsies, surgeries and hormonal, chemo and radiation therapies.
The group meets the firstWednesday of each month at 7:00 p.m. at Laurel Manor Regional Recreation Center on CR 466 in The Villages. Meetings are free and are open to all members, their spouses, family members and friends. Some meetings are Roundtables, for men only. Some weeks there are speakers and the meetings are co-ed. Other times, the men meet separately from their wives/partners and discuss different viewpoints and issues.
For more information, contact Dan Bard: 352 259-9433; Vince Felton: 352 259-7712; Steve Griffin: 603 224-8602; Fred Neilson: 352 365-1483 or Tom Vajda: 352 466-4194.
