A survivor’s perspective
By Patrick Fisher
September is National Prostate Cancer Awareness Month. According to the American Cancer Society, other than skin cancer, prostate cancer is the most common cancer in men and the leading cause of cancer death in men second only to lung cancer. African American men are at even greater risk.
While it is widely understood early detection of any cancer may yield the best outcome, there remains debate among providers regarding usefulness of the prostate specific antigen (PSA) blood test. Worse, a stigma exists among some men about being screened. The real challenge is that typically there are no symptoms for early stage disease but left untreated prostate cancer may spread to other organs or lead to bone cancer.
At one time, surgery or radiation “seeds” were the basic treatment options.
That’s no longer true. Today, more than ever before, there are multiple diagnostic tools and treatment options. Men need to talk with their providers, inquire about being screened (especially as they age) and get multiple medical opinions before making a treatment decision.
A high percentage of men I talk with were naive about all their options or looked to the internet as their trusted resource. However, most of them agree the PSA test was the first level of screening that made them aware they may be at greater risk and could benefit by treatment or continued active surveillance.
The impact of being told you have prostate cancer can be overwhelming. Researching pros and cons for a variety of treatments is exhausting. Medical providers do not have time to educate patients about the risk vs. benefit for all their options, especially those the provider may not be aware of or not qualified to perform, and options that are not locally available or considered experimental by the Food and Drug Administration.
Thankfully, Us TOO International is a no-cost clearing house on the topic and has become a leader for prostate cancer support and patient education. Rochester is fortunate to now have an affiliate chapter.
The parent nonprofit was founded in Chicago in 1990 by two prostate cancer survivors. Today, there are more than 200 chapters around the world. The affiliate chapter, Us TOO Rochester, has no paid staff and is managed by local survivor families. Printed materials are provided at no cost and websites are kept current at www.ustoo.org and www.ustoorochester.org.
Monthly chapter meetings help those newly diagnosed and those with metastatic disease become aware to a full menu of treatment options while providing hope and support.
At Us TOO Rochester meetings and seminars local urologists, oncologists and subject matter experts are often invited as guest speakers. Attendees learn about advances in diagnostics such as color doppler ultrasound, multiparametric magnetic resonance imaging (MRI), or gene and biomarker testing. Speakers may also share knowledge about treatment options including laparoscopic surgery, high dose rate (HDR) brachytherapy, stereotactic body radiotherapy (SBRT), intensity modulated radiation therapy (IMRT) or high intensity focal ultrasound (HIFU) which is now FDA-approved and available locally.
Some men prefer to learn from another’s experience. Meetings give them that opportunity. Others share their experience with pelvic floor rehabilitation, proton beam radiation, plant-based nutrition, implants or additional therapies that proved helpful.
Us TOO Rochester relies on donations and fundraisers to meet expenses.
Prostate Cancer Walk
The Fifth Annual Prostate Cancer Walk will take place from 8:30 a.m. to noon, Sunday, Sept. 15, inside The Mall at Greece Ridge. By attending, participants help to convey the importance of early detection while showing support for more than 16,000 local men, and those who love them, who struggle every day with a prostate cancer diagnosis.
The walk is open to everyone concerned about prostate cancer and kicks off National Prostate Cancer Awareness Week in Rochester.
On-site registration is $30 ($20 online) and opens at 8:30 a. m. Admission includes free refreshments, free PSA screening by UR Medicine Labs & Urology for men age 50 and older and 40 and older if there is a family history of prostate cancer. It also provides access to a collection of antique and classic cars provided by Street Machines of Rochester, performances by Oasis Senior Tap Dancers and small dogs seeking their forever home by Buffalo Pugs and Small Dog Rescue.
For more information about Us TOO Rochester, visit www.ustoorochester.org or send email to: ustoorochesterny@gmail.com. For more information about the prostate cancer walk and to register as a participant, or to be included as an event co-sponsor, visit the event website at www.ProstateCancerWalk.org or send email to pfisher0317@gmail.com.