On June 29th we hosted a webinar that we know you’ll love to share! Titled “Genetic and Genomic Testing The How’s, Why’s and Where’s“, you’ll get a crash course on everything genetic and genomic testing related.
AnCan is proud to announce that we recently joined the Modern Medicaid Alliance, a partnership
between Americans who value Medicaid and leading advocacy organizations. We look forward to
working with the Alliance to educate policymakers and the public about the benefits and value of
Medicaid.
As part of our partnership with the Modern Medicaid Alliance, we will be highlighting the diverse
populations that depend on Medicaid for their health and financial security. Medicaid covers about
1 in 5 Americans, including millions of children, older adults, people with disabilities, and 2million
veterans. Medicaid provides an essential safety net for when Americans need it, providing high-
quality, cost-effective care to more than 73 million people nationwide.
We join the Modern Medicaid Alliance at a critical time. While policymakers debate changes to
Medicaid, the program is enjoying widespread support from Americans. In fact, recent polling
found that 86% of Americans want a strong, sustainable Medicaid program – and fewer than 20%
of Americans support cutting Medicaid funding.
AnCan is particularly interested in furthering Medicaid expansion in all States in order to
promote health equity. Indeed, providing mental health services to veterans and to all those
enduring chronic conditions is an urgent need.
Peter Kafka’s words this week allow us to plug our wonderful Stage 3 & 4 Cancer Caregivers Group …. although Peter’s words should encourage us to consider changing its title! I have seen them in compassionate action this week reaching out to a caregiver whose daughter was recently diagnosed with a difficult T3 lung cancer, and they are magnificent.
Led by former USAF Lt. Col and Women’s Health Nurse Practitoner, Susan Lahaie, our other Moderators include Pat Washburn and Barbara Dyskant, all of whom have lost partners to cancer – Susan and Barbara to prostate cancer, and Pat to breast cancer. The Group meets 1st & 3rd Tuesdays at 8.00 pm Eastern in our Barniskis Room. While all caregivers are invited to both groups, we do not discuss grief and bereavement during our 1st Tuesday meetings. Check out the Group and sign up at https://ancan.org/cancer-caregivers/
Back to Peter Kafka’s thoughts that speak volumes adn endorse the message above:
A WOMAN’S PERSPECTIVE
I recently stumbled upon a book published back in 1897, THE WOMAN IN BATTLE, by Madame Loreta Janeta Velazquez. I have not finished it at this writing, but it has already stimulated a number of thoughts relative to our individual journeys with prostate cancer.
Madame Velazquez was a young and quite ambitious woman who disguised herself as a man and fought in the United States Civil War as an officer in the army of the Confederacy. What intrigues me about her story is that it is a candid first-hand account of battles, conflict, life in the masculine military and observations of male attitudes and behavior from a female perspective. I don’t want to go into detail about her accounts other than to say that she charged right into the fray, doing battle from the start on the front line at the Battle of Bull Run.
I bring this story up as I said because I find it relevant to my own “battle”, and perhaps yours as well, with prostate cancer. Many of us on this journey have female partners who are in their own way affected by the nature of our own infliction with prostate cancer needing some form of treatment and intervention. But we rarely, if at all in our meetings hear of this experience from the female perspective. I know that we (AnCan) and other support organizations facilitate gatherings for caregivers that give partners some outlet of expression. But for myself and many of you most of our female partners would not categorize themselves at “care givers”. They are our partners who have been thrown into the fray by no choice of their own and have tried to navigate their way through the obstacles that our disease has presented.
Recently at one of our meetings a participant asked if I knew of a woman that could speak to his wife about what to expect and experience relative to a course of ADT drugs which he was about to embark upon. This request stopped me in my tracks because I had never had such a request before. It took me a while but I was able to find a woman who was of a similar age and experience who was willing to dialogue with this man’s wife. It is never hard to find another man with experience to speak with regarding any number of prostate cancer treatment protocols. I have often relied on other “brothers” as many of you no doubt have as well. But for those of us who have female partners, they are sometimes left adrift to fend for themselves, only hearing our own complaints and miseries and sometimes the opinions of our treating physicians.
But it is important to remind ourselves that if we are blessed with a woman in our life, that they too are going through changes and challenges as a result of our prostate cancer diagnosis. Their experience and perspective are just as valid and important as our own. This is not just a MALE disease because it can affect many of the ways that we relate to female partners, physically, emotionally and mentally. It is not often that female partners join in on our calls, but they are never excluded from most of our discussions and their perspective is very much valued.
AnCan’s founder, Rick Davis, innovated virtual peer-led support groups back in 2010. He recognized the potential of peer advice as the best information a patient could find. AnCan’s 2021 research confirms what Rick knew intuitively.
Neuroscientist Herb Geller PhD, the abstract’s lead author, highlighted the following key research findings,
“Our research indicates that peer-led groups don’t just improve quality of life around the things we can control like diet, exercise and stress. Eighty percent of our participants feel the groups make them better advocates for themselves, and well over 60% take information gleaned back to their healthcare teams.”
While this poster is featured in the Advanced Prostate Cancer track on Feb 17, AnCan is proud of its work to establish the stature of the low risk Active Surveillance (AS) protocol and includes its AS findings.
Co-author and nationally recognized AS Advocate, Howard Wolinsky, said:
“Sixty eight percent of our AS participants told us the Groups made them better advocates and 27% reported lower levels of anxiety – that’s a major difference. Active surveillance is the Rodney Dangerfield of prostate cancer – including our study at GU ASCO recognizes AS patients”
Rick Davis, founder of AnCan and a prostate cancer survivor, says the research demonstrates the power of patient communities on outcomes:
“I realized the power of peer-led support groups from my own treatment. Bringing them to a virtual platform 10 years before anyone had ever heard of COVID-19 and Zoom meetings, made peer support available to those compromised by geographical, physical and social issues. Recognition by GU ASCO is a big step in legitimizing AnCan’s work for all peer-led support.”
Want to make 2022 the best year of your sex life? We’ve got the webinar for you in “Cancer, Chronic Illness, and Intimacy”.
From pleasure with a partner, or just riding solo, nothing is off limits in this webinar featuring sexual medicine rockstar , Dr. Rachel Rubin.
Featuring a panel of patients Dion (lupus), Jimmy (prostate cancer), Kim (multiple sclerosis), and Michael (testicular cancer), and questions from the audience, you’re sure to find answers to your own questions.
