One of our earliest, and certainly most enduring, non-prostate cancer moderators has been nationally recognized caregiver advocate, Renata Louwers. In barely 12 months, if that, Renata lost her first husband, Ahmad, to bladder cancer back in 2014. Since that time she has tirelessly campaigned to establish the Caregiver perspective on the medical radar; not to mention all the fundraising she has done for BCAN and bladder cancer …. G-d Bless Her!
This past week Health Union published the second part of an article Renata wrote for their Bladder Cancer Page – both parts are linked below. And no, they are not specifically about bladder cancer but more about her experience of being a peer moderator for a videochat virtual group that AnCan runs for Advanced Cancer Caregivers.
The easiest way to find more of Renata’s articles …. and there are so many excellent ones, especially for The Philadelphia Inquirer, is to google ‘Renata Louwers, medical journalist‘; do it and you’ll have no regrets!
AnCan’s heartbeat thrives on helping peers; it races when our Volunteers, our lifeblood, find satisfaction in the work they perform for us at AnCan. We love our volunteers; we especially love you, Renata xox
To receive reminders for our Advanced Cancer Caregivers Group, or any others that are all free & drop-in, click here.
Peter Kafka, AnCan’s Board Chair, Lead Moderator for the Low/Intermediate Risk Prostate Cancer VIrtual Group, and general renaissance man reflects on how readily accessible medical care is to many. Since Peter is just finishing his 6th and final cycle of chemotherapy for his own condition, he is well qualified to muse! (rd)
One aspect of the Covid-19 pandemic that stands out to me is the tension amongst the nationalistic models of healthcare and preventative medicine that exist in the world. It seems to me that this current experience is exposing the need to push the door open to a more cooperative and universal model of access to healthcare. Once a vaccine is developed it will have to be available across the board to everyone otherwise national borders will forever be closed.
Those of us who have been dealing with various aspects of the prostate cancer spectrum for any time have no doubt noticed the disparities in the world regarding diagnosis and treatment. Yet the disease, like Covid-19 is universal the world over. Even within the United States, the options that are available to men who face prostate cancer are not even all over. In my own experience I have had to travel many miles to seek diagnostic and treatment options for my disease that were not available at home. And I know that many men who face a similar predicament do not have this option.
The term “Standard of Care” seems to relate more to the legal protection of the medical field rather than a measure of the best options that a patient might have. It is not a good yardstick, and lags way behind the rapidly advancing medical advances in the world of prostate cancer. Standard of care is often the medical minimum and I feel that all of us men, the world over deserves more than that. I know that I would not be alive today, six years on from diagnosis if I had settled for the standard of care treatment for my disease.
In the current situation with travel restrictions and closed borders some diagnostic and treatment options are no longer universally available, even to those who might be in financial position to afford them. Up until recently it seemed that money was the key that opened the door to the best healthcare. So, in my mind, during this unprecedented time of worldwide crisis it should give us pause to ponder if there perhaps a way forward to raise the bar and make the best healthcare more universally available to all. Can we imagine such a possibility?
The TALK is a series of webinars addessing how parents and kids of every age speak to each other about their health conditions. If you haven’t noticed, this is a topic that rarely get aired in public – AnCan hopes to address that over the next several months.
We started last Tuesday, June 30 with a discussion around prostate cancer, moderated by genitourinary medical oncologist extraordinaire, Dr. Alicia Morgans speaking with panel members that included pairs of father and child from ages 17 to 43. We also welcomed Dr. Ryan Berglund, a urologist at Clevaland Clinic and spokesperson for MENtion It, a men’s health awareness campaign sponsored by his institution. Dr. Berglund had excellent slides and a 2 minute video that we were unable to view due to a SNAFU by our co-presenters, UsTOO. But the magic of modern technology allows us to provide them to you here …. click here – the video is embedded in the 5th of 6 slides. And to watch the whole, outstanding presentation, click on the video above
AnCan is a huge proponent of inclkuding palliative care in your treatment plan and medical team!!
Palliative care is NOT about hospice or end-of-life ….. that is just a sub-set of palliative medicine. At AnCan we prefer to call it Symptom Management, the lingo used by UCSF. That is no coincidence as AnCan has an excellent longstanding relationship with the UCSF service. Dr. B.J. Miller is on our Advisory Board, and Dr.Mike Rabow, the Director of Symptom Management Service at UCSF, is a friend of the family too.
Last Friday, Dr. Rabow gave an excellent webinar on CureTalks titled Redefining Palliative Care – you can listen here. For those living with advanced cancer, auditing this webinar is a MUST in our view!
More good news to offset the difficulties of advanced cancer treatment!
If you have been paying attention, you will have noted that ADT (androgen deprivation therapy) drugs may protect against COVID19. A certain male protein, TMPRSS2, acts as a door handle for the virus to enter the lungs. ADT drugs suppress TMPRSS, and the LHRH antagonist, degarelix (Firmagon) has been shown to be very effective in controlling the virus in an Italian trial and is now being tested here in the US through the VA System; Prostate Cancer Foundation has sponsored both trials. Here are a couple of links to enlighten you:
Now the BBC is reporting this morning that dexamethasone may be a “lifesaving” COVID19 drug. Dexamethasone is a steroid, frequently used around the time of infusion for intravenous infused chemotherapy. In the UK RECOVERY Trial it has been shown to perform as a very effective agent to control the immune system, hence the aggression of the COVID19 virus. AND its inexpensive and readily available!
So if you are anything like our intrepid AnCan Board Chair, Peter Kafka, and currently on ADT and chemo, you may be very well protected against COVID19.
I was recently honored to collaborate with WEGO Health for a presentation on how to conduct virtual meetings and support groups. Watch the recording above …. And we also distributed a Moderator Cheat Sheet for Virtual Meetings that you can download.
Please reach out to me at rd@ancan.org or 415 505 0924 if you have questions.
