Do I have the song by Marvin Gaye stuck in your head now? Great! It is a classic after all, even if I did a slight remix.
At AnCan, we are all about supporting you. In fact, no matter what the condition, it’s all we do. We believe that advocacy, navigation, and support should have no barriers, ever. And I’m even prouder to say we accomplish that daily. Seeing your faces at each virtual support group, or as an attendee in one of our webinars is plenty enough for us, but it is nice to be acknowledged sometimes too!
If you want to know more of our “why”, I recommend you listen to Rick’s interview with Journal of Health Design. It is a perfect road map to where we started, where we are, and where we are going.
Don’t forget, even though it is Thanksgiving week, we wouldn’t spend it with anybody but you. Check out our event calendar and let us offer the support you need this holiday season, and beyond!
Once again, thank you Ms. Cullen for the shout out, and we’ll keep doing what we do best. Giving support to all!
I love how Susan discussed the importance of Virtual Support Groups for caregivers, and how it enables the caregiver to get the support they need without having to leave their loved one. She tells the story of how the AnCan Caregiver support group formed from our Virtual Prostate Cancer Support Group, and appreciated our founder Rick Davis for not only providing support groups for prostate cancer, but recognizing the caregiver needs support too.
Susan voiced so many issues caregivers have within the healthcare system. She expressed how providers need to realize that while this may be “their millionth time”, it’s the caregivers first time in this space. Communication is so important with everyone involved in the care of an individual. She also talked about a very painful moment where she felt abandoned by the oncology team. Fellow Caregivers Virtual Support Group moderator Renata Louwers spoke of Susan’s experience:
“I think your story about feeling abandoned by the oncology group is such a powerful one and all too real. I’m glad you talked about it. I know providers certainly don’t set out to leave patients and families feeling that way, but it can often feel that way.”
We know Susan and all our other moderators will bring positive change in this area!
You’ll also hear Susan’s advice on Palliative care (plus why you should go sooner, rather than later.), communication agreements, and remembering a loved one during the holidays.
If you asked me what I love about AnCan, I’d talk about how proud I am to be part of a team that provides a lifeline of support, no matter where you are. I live in rural East Texas, and going to an in-person support group before these wild times of COVID meant multiple hour drives. And that’s only if they had a support group for my condition! The beauty of the internet means as long as we have internet and a GoToMeeting room, we can have a kitchen table conversation anywhere.
If you have never visited our “All the Faces of AnCan” page, I highly recommend you do so. We truly have the best people around, and we couldn’t do any of this without them.
Today, I want to tell you about one of those people: Advisory Board Member and Active Surveillance Prostate Cancer Moderator, Howard Wolinsky! As you’ll read in his bio, he’s been nominated TWICE for A Pulitzer, and recognized by the National Press Club, and American Bar Association. He’s co-authored “The Serpent on the Staff: The Unhealthy Politics of the American Medical Association” and the best-selling “Healthcare Online for Dummies”.
Howard has a new book out called “Contain and Eliminate“, and we’re sure you’ll fall in love with his factual, yet dynamic and exhilarating writing style. This would make an excellent edition to your winter reading, or a great holiday gift. (We recommend reading it in an AnCan Sweatshirt!)
Congratulations on what is sure to be another successful book, Howard! I can safely say that all of us at AnCan value you so much. Just keep our community in mind when the movie deal is made. I’m sure you can find a great use for Rick’s UK accent.
An article Howard has been developing for some time, The Swinging Pendulum of PSA Screening, was finally published this morning. It included not just thorough research (as always!) but interviews with significant names …. and I do NOT include myself in that crew. One of those names was USPSTF Chair, Dr. Alex Krist who agreed with many of us “that (prostate cancer) overtreatment could have been prevented if doctors used the PSA information more judiciously.”
Howard’s article goes on to quote Dr. Krist ….
“Back in 2012, the data actually showed that that’s not what was being done.In fact, 90% of men with low-grade prostate cancers were getting surgery and radiation,” said Krist. “And we know today that that is overtreatment, and the treatment patterns changed between 2012 and 2018 [when USPSTF again reviewed its PSA guidelines].”
What breaks my own heart are the number of men now diagnosed so late that their disease is already metastatic resulting from not being PSA tested and its D Grade awarded by the USPSTF … and many of these men are in their 40’s and 50’s. Just last week we buried a 55 yr old man with two young kids diagnosed de novo metastatic in 2016. He had a family history … a reasonably intelligent GP should have known that and tested his PSA starting at 40 or 45. And he should have been tested for an inherited mutation and never was … but that’s a whole different blog post!
Remember, PSA TESTING IS ABOUT INFORMATION NOT TREATMENT! What you and your doctor do with that information is between you …and that is why you have to be your own best advocate. That said, without information, it’s tough to advocate!
AnCan was deeply honored to co-present the webinar “Prostate Cancer Connections: Genetics, Genomics and Prostate Cancer” with US Too International.
For the second of our three Prostate Cancer Connections webinars, we offer a discussion on genetics, genomics and prostate cancer. About this exciting emerging topic, panelist Katie Stoll states, “Genetic testing technology is changing rapidly and there are a growing number of genetic testing options available. We’re here to help you sort through the wealth of information in this new age of genetics. Our goal is to provide objective expertise and latest developments.”
Recorded on Thursday, October 15, 2020, you’ll enjoy hearing from distinguished panelists Heather H. Cheng, MD, PhD (Director, Prostate Cancer Genetics Clinic, Seattle Cancer Care Alliance), Katie Stoll, MS, LGC (Executive Director, Genetic Support Foundation), James Barrett DeLong (Patient Perspective, University of Washington School of Social Work, Lecturer Emeritus), Janet Shimabukuro (Patient Perspective).
Watch this outstanding webinar here:
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER 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.
