We had our first The TALK, a series of webinars addressing how families speak to each other about their health conditions, of 2021! On Wednesday March 31st, we were honored to have many “pairs” of different types talk about inherited mutations.
With opening commentary and resources from Melissa Rosen(Sharsheret) and Lisa Schlager (FORCE), Rick then introduced moderator extraordinaire, Lindsey Byrne!
We met Ilana Feuchter, with mom, Rozzie Brilliant (BRCA), Peter Kafka, with son Joel Kafka (Lynch mutation, MSH6, and somatic BRCA), sisters Karin Roseman and Stefanie Tsantilis (BRCA), and Dr. Pamela Munster, and with son, Max Daud (BRCA). They shared open and honestly about their own “talks”, and shared many relatable experiences.
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
Our Board Chair and long time moderator, Peter Kafka, tells us how he fortuitoulsy got his Covid vaccination last week. For the first time, Peter adds the High Risk/Recurrent//Advanced Prostate Cancer Group to his Moderation repertoire this week.
POKEY MAN
i just returned this morning from getting my initial Covid-19 Moderna vaccination. Happy to report that it was an uneventful event. My anxiety level was increasing in recent days as our positive cases began to tick up considerably out here on little Maui in the middle of the Pacific ocean. Information here is slow to filter down and when I inquired about the shot I was tole that it would be some time in April or May since I was not yet 75 years old. Then, I got a surpise call from the Pacific Cancer Foundation which I volunteer for in a support and advocacy capacity and they told me that they could get me into their priority group today.
I am certainly not bragging about the above, but I mention it because there was absolutely no hesitation or concern in me about going forward with the vaccination. In the past 7-years I have been poked and scoped and proded more times then I can count. This kind of comes along with signing up for medical treatment for advanced prostate cancer. I understand that there may be as many as 40% of Americans who may decline getting a Covid-19 vaccination according to polls and predictions. And this is a personal choice in our society. But I doubt that those of us who find ourselves in this subset of Prostate Cancer guys would be so reluctant.
Over the years I have met men who chose not to enter into any kind of treatment for their more advanced prostate cancer diagnosis. Some of these men are still around and others not. I always wrestle with what my role is in this decision. I can encourage, I can strongly suggest that someone at least consult with a doctor who might be more pursuasive than me, and most of all I can point to myself as an example of a man who has not suffered from a host of medical treatments thus far. But in the end everyone must live or not with the decision they make.
The other day we had an AnCan Webinar with Dr. Jonathan Epstein, the go-to pathologist at Johns Hopkins for second opinions. He mentioned that he does actually consult with some of the men who reach out to him. This brought a smile to my face when I recalled a good friend who was leaning toward his own alternative treatments for his GL-4+3 diagnosis. I encouraged him to get a second opinion from Dr. Epstein. On his own he called the office and Dr. Epstein listened politely for 10 minutes while my friend described his alternative treatment protocol. Dr. Epstein responded, “That is all fine and good and you can continue with that protocol but you need to know that without medical intervention this disease can kill you!” That was all it took, a few weeks later he was getting radiation and he is doing fine and we are best of friends.
Other people do too, as The Hallmark Channel and Lifetime’s viewing schedule would indicate. I’ve been snuggled up with my mom (affectionately known as Mama Jett in the young adult cancer community.) watching a few of the Christmas and Hanukkah selections. Not only are they a wonderful addition to the holiday seasons, but in this year of chaos, they (along with the people of AnCan) remind me this world we call home isn’t so bad after all.
We had our own beautiful story here recently, and I can’t wait to share it with you!
I’m honored to be a moderator for The Chris “CJ” Johnson Foundation/AnCan’sRenal Medullary Carcinoma virtual support group. My dear friend Carlos Moran died of RMC, and his wife Charissa (also a moderator) is part of my family for life. Charissa connected me with Ritchie Johnson (founder of The Chris “CJ” Johnson Foundation), and she’s put me to work for this incredible community ever since. We’ve been well attended ever since the first meeting, which only proves how valuable peer-to-peer support is.
At our December 8th meeting, our beloved friend Joyce came again. She’s had a difficult few months, and is in Hospice. We do what we do, and how we do it for people like Joyce. She dropped in from her phone, and didn’t have to travel anywhere. We made her laugh (one joke was my own donut story!), encouraged her, and made commitments to keep her lifted in prayer. We record our meetings so people who don’t feel well enough can come that night can watch anytime they are comfortable. I encourage you to watch this particular meeting:
One important thing came to our attention. Joyce has been wanting a burger, and we encouraged her to get one. But unfortunately, the cancer related pain makes it impossible for her to take a trip at the drive-thru. The people around her also didn’t want to bring her one, as they felt like cancer patients aren’t allowed to have them.
That wasn’t good enough for us. Team RMC and Rick sprung into action that night, and we were going to get Ms. Joyce her burger. Through emails, phone calls, friends of friends, and internet searches, a solution emerged. Thanks to DoorDash, WE DID IT, even if we are many miles away! She and her daughter, Nevaeh had delicious bacon cheeseburgers, french fries, and vanilla shakes. Thank you so much, DoorDash and Five Guys!
While this may seem so small, it isn’t. RMC is an under funded, researched, and advocated for cancer due to significant health disparities. Related to Sickle Cell Trait, this community does not get the care they deserve. It was always more than a burger, it was a message that we care, and we stand with you.
Joyce, we love you, support you, and are proud to stand with you. There will be many more DoorDash orders in your future! Thank you Ritchie, The Chris “CJ” Johnson Foundation, AnCan, and Team RMC for this amazing happy ending.
No matter what you are celebrating this month, I am reminded by this quote by Rumi;
The lamps are different, but the light is the same.
Decorating a Christmas tree with lights, or lighting the Menorah still produces what we need more of in this world: light.
And in this winter season where the sun sets earlier, we are drawn to the warm illuminating glow that glistens even stronger in the darkness. It’s the same mesmerizing feeling of the sunrise lighting the dark skies, a reminder that each day is a fresh start. I think that’s why AnCan really fulfills our mission of providing support. We understand that cracks are how the light that shines through us. We have all gone through different things, and want to provide “light” to others.
The beauty of light owes it’s existence to the dark – Brené Brown
I encourage you to see the light in the little things, to always look for the stars when it’s dark, and to provide a little light to others wherever you go.
For information on our peer-led video chat RENAL MEDULLARY CARCINOMA VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Many of you already know, AnCan works closely with Foundation Medicine Inc who offer Next Generation Sequencing (NGS) somatic liquid and solid tumor testing.
Here are THREE great pieces of news shared with us over the past few days:
The ‘new & improved’ Liquid CDx Test was FDA approved late last week, meaning this test now covers the same 300+ mutation panel as the solid tumor test – but at the prick of a needle! . Read their full press release here.
Medicare considers the Liquid test to be separate and independent from the Solid Tumor test meaning both are covered for the same individual at different times.
AND that’s not all ….. finally we have a decision back from FMI that repeat testing for either Liquid or Solid is Medicare covered IF there is disease progression. In FMI’s words (that we are approved to disseminate):
AnCan’s always advocating for you ……. and thanks to the FMI team for pursuing this, especially Senior Manager for Patient Engagement, our good friend David Marshak!
