Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 15, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Controversial Death with Dignity discussion starts – and Keytruda shows up more than once at the back end … after passing Dude Wipes along the way! (rd)
Topics Discussed
Talking ‘Death with Dignity’ with AnCan Advocate; urologist refuses Provenge – get a GU med onc!; pros & cons of treating the primary; timing of RT; handling multiple QBs; Bx find no NEC; salvage RT commenced; clean up with Dude Wipes; brain fog/short term memory loss – drug and non-drug remedies; Flomax and brain fog; some Gents take just 2.5mg/daily prednisone with abi; Eligard & ukuleles; another Gent looks to pembro/Keytruda; proteomics; wean off Prolia; pembro vs chemo decision
Chat Log
Ben Nathanson sent · 5:14 PM As the End Nears: Dying with Metastatic Cancer https://join.compassionandchoices.org/a/end-nears-dying-metastatic-cancer Compassion & Choices https://www.compassionandchoices.org States where medical aid in dying is authorized, and dates when it took effect: Oregon 10/27/1997 Washington 3/5/2009 Montana 12/31/2009 Vermont 5/20/2013 California 6/9/2016 Colorado 12/16/2016 Washington, D.C. 2/18/2017 Hawai‘i 1/1/2019 New Jersey 8/1/2019 Maine 9/19/2019 New Mexico 6/20/2021
Joe Comanda (Philadelphia) sent · 5:21 PM I don’t want to cause trouble, but I am troubled by the advocacy of Compassionate Choices, formerly the Hemlock Society. I would hope that men would not take that way out.
Len Sierra sent · 5:23 PM Everyone has to make that decision for themselves. No one else should make it for them.
rd sent · 5:24 PM We think it’ s each person to his own… AnCan believes everyone has a choice, Joe.
Jim B sent · 5:36 PM Hi Bob, I just had a Pluvicto treatment this morning. No side effects so far but I’m sure that dry mouth, nausea and slight fatigue will continue. How is your WBC coming along?
Joe Gallo sent · 5:47 PM Genito Urinary (GU) Oncologist Dr. Eleni Efstathiou
Peter K sent · 6:37 PM I have had 3 med oncs for over a year now. 2 up to a year ago. They are all valuable and I keep them all informed and they all have vaulable input
rd sent · 6:38 PM MDA – maybe the best cancer hospital … but not the best prostate cancer hospital
Peter K sent · 6:42 PM They are doing MRidian SBRT with View Rayt in Michigan- low toxicity in trials
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.
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.
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.
What do oncologists have against palliative care ….?
If you regularly attend AnCan’s virtual chat support groups, you are sure to know that whatever the condition, we frequently recommend palliative care … almost anytime and place we can.
And NO – palliative care is not about dying – it’s about preserving Quality of Life. Some of the smarter institutions have figured that changing the name to an acronym like Symptom Management Service at UCSF or Supportive Care at Memorial Sloan Kettering may account for greater acceptance and higher quality. It may also explain why these two institutions are among the best in the biz. Others like City of Hope, that still keep Palliative in their name, struggle to make palliative care easily available to their patients.
A recent article in Hospice News reports that “Cancer Patients Often Not Referred to Palliative, Mental Health Care”. Amongst 240 surveyed oncologists, only 17% referred their patients to palliative care early in the disease process. Yet many studies show that the earlier a patient is referred to palliative care, the better the outcome – especially for cancer. On more than one occasion at the same NCCN hospital, AnCan has had to navigate a participant to self refer to palliative care in order to receive treatment. In one instance, this even involved the Chief Medical Oncologist.
Given the underpinning principle in medical ethics of ‘Do No Harm’, essentially embodied in the Hippocratic Oath, how can this be?
At AnCan, we have a theory, we see this as a control issue. For some oncologists, and maybe other specialties who might collaborate with palliative care too, they are uncomfortable sharing patient management with other docs in essential areas like palliating comorbidities. While palliative care physicians are required to stay up on developments in pain treatment, antiemetic (nausea) drugs, and other forms of supportive care, oncologists have their heads buried in cancer care.
AnCan is very fortunate to have Dr. BJ Miller, one of the foremost palliative care gurus in the US, on our Advisory Board. If you doubt that, BJ’s TED Talk is now up to 14.6 million views! Dr.Miller now practices his profession from his own organization, Mettle Health; his services have comforted several AnCan participants. So we thought we would ask Dr. BJ Miller for his view on an issue he has lived with for many years …..
” I think medical training is part of the problem, as is confusing messaging around what is palliative care. and i agree that a piece of the problem is related to control, and, related, misunderstandings about how palliative care works (ie, as an additional layer of support that makes the treating physician’s life easier as well as his patients’; not a service that will steal your patient away or somehow undermine your authority).
and then there’s the culture of medicine, where death is the enemy and suffering is just part of the cost of doing business; and where medical issues are taught as separate from the psychosocial and spiritual issues a patient faces.
lastly, medicine generally does not include the caregiver/family in the equation, where much of the suffering happens.” …….. Tx BJ!
Sharing patient management may not come naturally to many physicians, especially if not part of their institutional culture. At AnCan we say, let the doctor most specialized in each aspect of care take responsibility for it on behalf of the patient. When inappropriate doctors stand in the way, the patient suffers.
Of course, AnCan is a patient driven organization ….. we welcome a response from other docs to explain what we are missing!
This week, Peter Kafka considers how the constraints on providing health care during the pandemic may have long term consequences.
As an editorial note, we now see how discouraging PSA testing has come back to haunt us. The American Cancer Society projections for new prostate cancer cases in 2021 have leapt 30% from 2020 to 2021 reaching ca. 249,000. Ancan puts it down largely to built-up backlog due to lack of testing. (rd)
As I sit down to compose this reminder notice for our upcoming meeting, I am very much aware that here in the USA this weekend we will probably reach the milestone of half a million recorded deaths from Covid-19 in the year since the first deaths were reported. Regardless of how you might process numbers such as this, one thing for sure is that this Pandemic has flipped much of our healthcare system on its head and that impacts all of us. And of course, this is not only true in the US, but throughout the world.
Just the other day, “I heard it through the grapevine… that my medical oncologist (for the past 6-1/2 years) would no longer be mine”. Yes, the thriving practice that he was such an integral part of began losing so much money this past year that he had to depart for his own financial security. Many independent medical practices are struggling as are hospitals that depended upon elective surgery and emergency room visits to remain financially viable. People just aren’t going to the doctor the way they used to in 2019.
Men were notorious for avoiding doctors even before this pandemic. But now it is amplified. For those that are healthy and young the impact is minimal. But for those who are older and have increased risk of serious illness and disease such as cancer, the impact on both men and women is considerably higher. Statistics are now rolling in comparing the diagnosed incidence of various cancers in 2020 to the totals of 2019 BC (Before Covid). The difference is substantial and not just a statistical fluke. Someone might take this to mean, “Great, cancer rates are dropping”! But unfortunately, this is not the case. Men and women are forgoing routine screening and testing for cancer for fear of going to hospitals, clinics and doctors.
Unfortunately, the implication is that in the months and years ahead there may well be a significant rise in the number of cancer cases that have advanced to a more serious metastatic stage because of a decline in early detection and early treatment. While the incidence of seasonal flu has slowed way down in this age of Covid-19, prostate cancer as well as other cancers and serious illness are still chugging along at the same clip, but just not being diagnosed. So, I think I will leave it there for you to draw your own inferences. If it were me, I would encourage anyone I know not to ignore symptoms and concerns about their health even if it is more difficult to get medical help.
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).