by Rick Davis | Apr 21, 2022 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News, Sarcoidosis, Thyroid Cancer, Women's Breast Cancer
Time Toxicity raises thoughts …
Some may have read the excellent ediorial written by Moderator Ben Nathanson in a recent High Risk/Recurrent/Advanced Prostate Cancer Reminder. Ben explains ‘time toxicity’ … a concept that effects many living with serious disease. If you missed his musings, here they are again:
Treatment that gives us time to live demands time in return. It drags with it scans, blood work, drives to the hospital, doctors running late, computers down, battles with insurance. Part of our gained lifetime is lost in dead time.
Toxicity is always in the cancer mix. Financial toxicity has become part of the conversation alongside physiological toxicity, and time toxicity — time lost in an effort to gain time — is joining it.
In a thoughtful 2018 essay, physician Karen Daily notes “Much of our patients’ time investments remain invisible to clinicians.” This year, in ASCO’s lead journal, three physicians have taken up the challenge, proposing that clinical trials, when reporting overall survival, distinguish between “Days with Physical Health Care System Contact” and days the patients actually own — “Home Days.” This a new idea only in cancer, say the authors — cardiology and other fields already make these kinds of measurements.
When medicine’s best offer is a handful of months, we face difficult choices. Time toxicity casts a shadow over both survival time and quality of life. As we try to balance days added against side effects, it would be good to know how much of the time we’re gaining will be ours to spend.
Reading Ben’s thoughts prompted one of our regular participants to write a reply to us both that touched me to the core. I asked if we could reprint that too, and was graciously given permission on condition of anonymity. Here it is!
Ben, thanks for the article on “time toxicity” in the (recent) meeting announcement. It identifies an important consideration for all to think about in the fight vs. cancer and from my personal experience an impact that changes over time. Your write-up got me to thinking and pushed me to a holistic realization that this is basically an investment decision with expected returns.
For the prostate component of my cancer fight (now 17 years and counting), I did not think about the time investment in the first 14 years that I (and family members) were making to “do battle” (eg lab work, appointments with doctors, scans, treatments, family meetings, insurance challenges and personal downtime / reduced effectiveness in work due to treatment, etc.), It was a “no-brainer” decision and I never considered the tradeoff as the benefits for the opportunity to “continue to live life” due to treatments as my “life” returns were overwhelmingly positive vs.the “investment” required to do battle.
Having retired three years ago and simultaneously entering a new phase of my cancer fight I am aware of the increased time I (and family members) now spend on cancer treatment yet obtaining reduced time for life (and quality of life). I’m now spending significantly more time at Doctors appointments, treatments and longer periods of time post treatment feeling the physical effects of treatment and have begun to recognize I’m going to hit a point where this equation gets out of balance….and I’m not equipped with a decision model to manage that occurrence. Given my personal nature is to grind on stuff (I can make it work, give me time and let me try!) — I’m likely to blow right past the point of equilibrium where time toxicity and balance of life toxicity begin to get out of hand. For much of the first 14 years of my cancer fight I practiced a very large (and for me, healthy) dose of self-denial that I was dealing with prostate cancer. I was able to keep the cancer part of my life cordoned off, did not have significant residual time spent thinking / worrying / etc. about the disease and lived life to the max both personally and professionally. Now, in the last three years I am finding growing quantities of “thinking time” consumed by the disease and also sucking family members…. wife and children….deeper into the cancer battle as discussions / time encroach on them as well increasing the cost of investment (time) in the battle vs. cancer.
Prostate cancer is my second cancer fight, Ten years prior to the prostate cancer diagnosis I was diagnosed with a rare leukemia (rare as it was diagnosed in a limited number of folks (~2,000 / per year in the United States) and was usually fatal shortly after diagnosis as there were no lasting treatments until about 4 years prior to my diagnosis. As a freak outcome of scientific research a drug treatment was developed; the drug was intended for another cancer that had a much larger annual incidence of new cases; the drug was not effective on the targeted cancer but it was very effective on the rare leukemia. And at the time the treatment protocol was 7 days of continuous drip via a small pump one wore around the waist as an outpatient; minimal side effects; and if the first treatment didn’t work a second round was almost guaranteed to work. Talk about lucky! There was no way research funds would have been spent on this cure except by accident — which was exactly the case. The time toxicity for me in my first cancer battle was non-existent and I believe has indirectly helped me in the prostate cancer fight by giving me a dose of optimism and coping skills.
I think the topics raised by both of you….including Rick’s statement on treatment longevity results are important for the group to consider. These are relevant points of management in the cancer battle that I haven’t seen addressed by my oncologists (except one) nor psychologists and psychiatrists that I’ve also used in my treatment.
Editor’s Comment: In the original Reminder, I responded to Ben’s comments by adding one of my own. I pointed out that frequently Overall Survival benefits were shorter than might be expected because trials are often run on patients at a very late stage of their disease. This caveat should be considerd when we see the FDA reporting short life extension, sometimes as few as 2 or 3 months, for newly approved drugs.(rd)
by Alexa Jett | Apr 19, 2022 | Advocacy, Recent News
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.
See the full release by clicking here.
by Hannah Garrison | Feb 18, 2022 | Advocacy, Cancer Resources, Prostate Cancer
This article by Howard Wolinsky summarizes a study by NYU Langone Health in New York City. The study is about the disproportionate prostate cancer representation in LatinX and Black communities in social media presence. Stacy Loeb, leader of the study and urologist at NYU Langone Health and Manhattan Veterans Affairs, stated “Online information is increasingly used by patients and their families but falls short in terms of quality, readability, and diversity of representation.”
Read Howard’s full article here: https://www.medscape.com/viewarticle/968371#vp_1
Howard Wolinsky is an AnCan Moderator and Advisory Board Member. Thank you, Howard, for spotlighting this important topic of minority representation in the prostate cancer community.
by Alexa Jett | Feb 17, 2022 | Advocacy, Press, Recent News
AnCan Recognized by GU ASCO22 For Peer Led Support Groups
AnCan Foundation is honored to announce its Abstract #58: Evaluating The Contribution of Virtual Peer-Led Support to Comprehensive Prostate Cancer (PCa) Care: The AnCan Experience together with a virtual poster has been selected for the ASCO Genitourinary Cancers Symposium, Feb 17-19, 2022 in San Francisco. DOI: 10.1200/JCO.2022.40.6_suppl.058
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.”
View full press release here,
View the poster here.
For information on our peer-led video chat VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for any of our groups, visit our Contact Us page.
by Hannah Garrison | Feb 9, 2022 | Advocacy, Cancer Resources, hospice and palliative, Recent News
The AnCan team thanks Dr. John Antonucci for submitting his opinions on hospice and palliative care in end-of-life considerations. Dr. John is a retired clinical, academic and research psychiatrist. His most recent gig before hanging up the white coat was at the VA providing care in the addiction clinics. He is also a peer in our High Risk/Recurrent/Advanced Prostate Cancer Group.
These opinions come from Chapter 11 of “Dynamic Duo: Hospice and Palliative Care” in BJ Miller MD and Shoshana Berger’s A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death
Our discussion group (High Risk/Advance Prostate Cancer) hasn’t talked much about end-of-life care or making decisions about things like resuscitation status, stopping treatment or hospice care. But the topic has come up lately, and since we have Dr. BJ Miller, co-author of a relevant book and a palliative care physician, on the AnCan Advisory Board, it is appropriate to take a first or second look at his chapter.
The authors start by defining these often-confused terms: Hospice provides end-of-life care with the goal of comfort rather than trying to cure a disease. It is actually a sub-section of palliative care. Palliative care is treatments added-on to regular medical care, at any stage of serious illness, and is intended to improve the quality of our physical, spiritual and emotional lives.
The authors explain what qualifies a patient for Hospice care. Anyone who has a terminal illness and is ready to stop treatment aimed at curing it, and who is expected to live 6 months or less, may qualify. A multidisciplinary team is then assigned and the treatments are brought to us, in our own homes if desired. (There are also residential hospices but these are not as common as often assumed.) Health insurance policies, including Medicare, cover Hospice. There are useful tips in the book on finding and choosing Hospice providers, and a section for when the hospice is not performing well. The authors encourage us to not to wait until our last few weeks to get this process going.
Palliative care is now its own medical specialty. Again, the idea is to make our lives nicer by helping to reduce a wide variety of suffering, including pain, anxiety, drug side effects, depression, fear, nausea, and spiritual pain. Most of this type of care is delivered in the hospital or outpatient clinic. Palliative care is integrated into our existing treatment plan, rather than being comprehensive like Hospice. Health insurance will generally cover these services although it might leave us with co-pays and deductibles. And again, the authors urge us to start early; there is no requirement that we be close to the end, only that we have a serious illness.
The overall effect on me of reading this chapter was not only education but also reassurance. Not only reassurance that we deserve comfort and don’t have to hide our suffering, but also that Someone will be there to care about our suffering and try to help. Quite comforting, I believe.
Reference:
Miller, B.J. & Berger, S., A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, 2019, Simon & Shuster, New York, Kindle edition
by Rick Davis | Feb 6, 2022 | Advocacy, hospice and palliative, mCRPC, Prostate Cancer, Recent News
John-Pierre ‘Jake’ Hannam GRHS …1953-2022
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).
Many of you will recognize Jake from the picture above, lying on his bed participating in our virtual meetings. This was largely Jake’s world – literally! I want to fill you in between the lines as to why AnCan and The Reluctant Brotherhood were Jake’s window to the world for the past 8 or 9 years. Jake was intensely agoraphobic – a fear of open spaces. He made no secret of this if you knew him, and occasionally mentioned it publicly in our virtual support groups. Jake was private but not in the least ashamed of his phobia.
For me personally Jake pesonified why I started this virtual endeavor 10 years pre-Covid. I recognized many people could not attend a real location – not only for physical or geographical reasons, but because they had a social disability … like, for example, agoraphobia.
In Jake’s case this was not recent. His wife, Paula, told me it was present when they dated and discussed having kids. She made it clear she wanted these future Hannams to visit the ocean and Disneyland; Jake made it clear those trips would need to be with just their mom. Jake was catholic – he held great relligious faith. So much so, that Jake told me on several occasions that his fear of death was subsumed by his fear of venturing outside his safe zone – and that safe zone shrunk the older he got. He preferred to stay at home on Xmas and Thanksgiving waiting for Paula to bring home leftovers, rather than take the 20 minute ride to his older son, JP’s house. His fear severely compromised Jake’s ability to seek the best treatment for his advanced disease. Because we loved Jake so, it frustrated many of us that a 40 minute drive to Johns Hopkins was never an option; he had to settle for mediocre local care.
I supported Jake from around 2013 (I think) when his cryotherapy failed. He was part of the Inspire UsTOO prostate cancer written forum, then started attending our Reluctant Brotherhood virtual telephone conference calls. Jake and I had our differences over the years. Unlike some of his AnCan brothers, I was smart enough to avoid politics, so Jake and I largely disagreed over treatment choices,and occasonally how I ran AnCan. That said, he never failed to support our effort, even updating a video introduction to AnCan as recently as early December that you can watch here.
Jake was our tech and social media guru. He figured out how to get AnCan on YouTube, Facebook and Twitter, He managed those sites for us, often posting content he sourced. Jake figured out how to record and publish our meetings; and, he was the first to volunteer to learn GoToWebinar to run our webinars. And many of our volunteers came to know Jake through being trained by him on these platforms. If you watched the screen when Mr. H was participating, his icon would go dark every so often for a minute or so. Most of us insiders knew that was Jake having a puff on one of his beloved cigarettes that he never gave up to his dying day. We all loved Jake dearly, even if it was not always kumbaya; he could be grumpy even irascible at times. Jake always discounted his own extensive knowledge about prostate cancer, and chose to be our behind the scenes moderator, making sure the meeting flowed well technically and muting any noisy interlopers..
Jake leaves his wife Paula, and JP and Phil, his two married, super smart boys with PhDs, one of whom travels the world for the World Bank. His first grandchild is expected next month. Jake was immensely proud of both of them, For details of Jake’s family, education and career, you can read his obituary here ; we thank Geoge Rovder for forwarding this to us.
AnCan and The Reluctant Brotherhood plan a joint virtual tribute to Jake Hannam on Sunday, Feb 20 at 6.00 pm Eastern. It will be on the RelBros Zoom platform not ours; we’ll publish a flyer in upcoming Reminders. Our sincere thanks to Peter Kafka and John Tesiberg for arranging this. This is my eulogy, so I doubt I wil take more time on Feb 20th.
And one last, very recent reminiscence to close that expresses a lot. I share this in Phil’s words from an email sent last Saturday, Jan 29, two days before Jake left us:
This is Phil (Jake’s younger son). Dad has been sleeping most of the day owing to the pain medication and hasn’t been able to use the computer since around Jan.14. He is declining more with each day. I offered to read his email today, and in reply to yours, he smiled and said “Onward and Upward” (the most he has said all day!).
Sincere thanks to you and my Dad’s other brothers at AnCan. We will keep you posted.
May Jake’s memory always be a blessing to us at AnCan Foundation and all who knew him.
