CNTV’s recent video features an interview with AnCan founder, Rick Davis. He explains that he started AnCan after his own diagnosis in 2007, after realizing inadequate support options, especially for those in remote areas. AnCan aims to eliminate barriers to entry for its various support groups, which range from cancer to chronic diseases. AnCan empowers patients to “Be your own best advocate” by providing them with the knowledge to speak confidently with their healthcare providers and offering peer-to-peer support.
As we always emphasize, taking care of our hearts (the actual organ) is very important to us PCa guys. For metastatic men, a very substantial minority of us will die of heart disease before our PCa gets us. For non-metastatic, more than half will.
So when Rick saw an article about the Cardiology Society of Sao Paulo devoting a seminar to Spirituality in the treatment of heart disease, he sent it right over to me with a suggestion to make it an invitation. The cardiologists reported that there are spiritual factors that benefit cardiovascular health, reduce cardiac hospitalizations, lower blood pressure, and even improve survival.
The “spiritual” factors the Sao Paulo group discussed are things like purpose in life, gratitude, hope, and “moral, emotional, and mental values that shape an individual’s behavior and decision-making.”
“Spirituality cuts across and transcends a person’s life, shaping their choices and way of living.” There are scales to measure spirituality for research purposes.* High scores on these scales correlate with the “depth of spirituality” with less hypertension, better cardiac output, better compliance with treatments, lower levels of fight-or-flight nervous activity, lower stress hormones, less inflammation, fewer hospitalizations, less anger, less anxiety, and longer life. Actual heart attacks are linked to acute stress, and spirituality helps lower that risk.
Treatment for spiritual distress has been tried. In one study, videos about spiritual reflection, gratitude, forgiveness, life purpose, and optimism produced drops in BP and better blood vessel endothelial function.
Since there is an overlap between “spirituality” and “religiosity”, several studies have separated the two, and the benefits described above do not extend to “religious” practices like attendance at services, religious rituals, or structured participation in a religion.
It is the same for cancer; research shows that spirituality plays a significant role in cancer. Spirituality practices made their way into Palliative Care Medicine years ago, particularly in end-of-life care and acceptance. “Spiritual distress,” however defined, is very common in cancer patients. And patients believe that their healthcare providers should consider their spiritual needs, and that this is often not done.
Let’s look in the NCCN and ASCO** cancer treatment guidelines for the word “spirituality”:
NCCN now has a “distress management” section where they recommend screening for distress, including spiritual concerns, as part of routine oncology care. If spiritual or existential concerns are found, they encourage referral to chaplains, spiritual counselors, or mental health professionals trained in spiritual issues. NCCN states that spirituality practices can improve quality of life, coping strategies, and treatment adherence.
ASCO also calls for psycho-social screening in oncologic care, which should encompass spiritual health. They advocate addressing spiritual concerns as an integral part of supportive care, and encourage open communication about spiritual and existential concerns, respecting patient preferences and cultural backgrounds.
Neither group provides detailed protocols for spirituality practices like they do for, say, chemotherapy, but both call for the integration of spiritual assessment and support in cancer care. They acknowledge that addressing spiritual needs can improve emotional well-being, coping, and overall quality of life for cancer patients.
We in MSF are wary of discussing religion. However, both cardiology and oncology sources separate religion from spirituality. It seems we should tactfully inquire about this together, since it is correlated with cardiac and oncologic outcomes and quality of life.
*We don’t have to use other folks’ definitions of spirituality, but here are a few of the assessments you can try out:
“Someone I once loved gave me a box of darkness” –Mary Oliver
I was at a 12-Step-oriented workshop about grief recently, and it made me think about Men Speaking Freely (MSF). We are vaguely aware of grief in all MSF groups, it hangs over us, and we have at times focused on some specific griefs/losses, such as vitality, or a longer life. It is commonly thought that not thinking about a loss, not talking about it is the manly thing to do. Here in MSF we get relief by sharing our common losses with each other.
The presenter of that workshop, Marcia C., had some ways to specifically talk about grief that were new to me. She gave me permission to use some of her material here. She pointed out some types of losses that I hadn’t realized. For example, the loss of who I would have been if cancer didn’t happen, the grief of estrangement, loss of work, of status, of friendship; the loss of never having had something, that of aging, of trust, or of giving up something.
She said there is “unacknowledged grief” when such losses are never fully brought to consciousness. When I looked at her long list of examples I saw many that I have. We ought to watch for unacknowledged grief.
She described “non-finite” grief, which has no end-point other than death. Ours could be in that category, since as time goes by our loss increases instead of lessens.
Marcia said, ‘’Sharing your grief is a way to receive validation and compassionate witnessing. It can help you begin a path to healing and/or finding a way to live with grief.
Consider the questions below:
1. Are there griefs you haven’t realized you have or have been afraid to face?
2. Are there griefs about which you’d like to share?
3. Do you have grief practices that might be helpful to others?
4. Make a list of griefs you’ve experienced.
5. Choose a tool from the list that might help you process your grief.”
That list of “tools” was long; it included things like: write a letter or poem describing our loss…Create a ritual of letting go…Share with others who have had similar losses…Visit a place that is meaningful…Make or buy a talisman that helps you feel protected…Dance, run, yell to get your feelings out of your body…Plant something in remembrance or as a new beginning…Start a new tradition…Do an intentional funeral… These are ways to bring acknowledged, unacknowledged, and non-finite grief out for a conscious conversation. Moving from covert to overt, with the goal of making a relationship with the loss, and getting rid of the unconscious silent prolonged scream that I, for example, think I harbor.
We think of grief as emotional, but in “Dealing With the Physical Impact of Intense Grief” by Batya Swift Yasgur, the author describes the variety of physical reactions to grief. Ranging from elevated blood pressure to takotsubo cardiomyopathy — sometimes called “broken heart syndrome” — which is a “stress response that balloons the heart.” We often wonder about the reaction on our immune system, and its implications to our overall survival. In fact, probably nearly all our systems react to grief in some way.
There is a fairly new grief-related diagnosis in the Diagnostic and Statistical Manual and the International Classification of Diseases, describing a “persistent and pervasive grief response” that goes on longer than a year., and is now called Prolonged Grief Disorder. In order to be diagnosed with Prolonged Grief Disorder, a person must experience at least three of eight additional symptoms that include “disbelief, intense emotional pain, feeling of identity confusion, avoidance of reminders of the loss, feelings of numbness, intense loneliness, meaninglessness, or difficulty engaging in ongoing life” according to Columbia University’s Center for Prolonged Grief. For an adult to meet the criteria for a PGD diagnosis, the death of a loved one must have occurred at least one year ago, and the symptoms must be present most days since the loss and nearly every day for at least the last month.
Our situation is different from losing a loved one (although it includes that) and waiting for the grief to go away. Instead of a major loss which goes farther and farther into the past, our major loss is in the future. We have sort of a reverse Prolonged Grief Disorder. For instance, I expect my losses to get worse and worse until death.
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.
It’s certainly more than one person can handle. In fact, it’s more than myself, a volunteer, plus 4 contract people and an outside bookkeeper can handle. I’m not the only volunteer. I am so honored and privileged to say it’s more than around 100 volunteers can handle, and we could not manage without your efforts – much gratitude.
For some time, the executive function has been too much for me to manage alone, even with the help of our volunteer Executive Board made up right now of Bill Franklin, David Muslin and Stuart Jordan – btw, we’re looking to add to that too. We’ve been looking to hire executive help and the perfect solution has presented itself.
Some of you may be aware of the term, Fractional Executives – The Charity CFO just ran a podcast. AnCan has been fortunate enough to find one who knows us intimately. Courtesy of the USAF and subsequently, extensive consulting experience at The Mitre Corporation, our Board President, Bill Franklin, is voluntarily reducing his hours at Mitre to take on a contract position of 16-20 hours a week with lil’ ol’ AnCan.
As our Board President since August 2021, Bill knows all the ins and out, he’s seen us grow, and most significantly he’s willing to work with me! Bill’s also looking to phase out of Mitre and find new challenges as he approaches retirement. AnCan provided a great solution and we welcome him as our new Chief Operating Officer.
Bill will continue as Board President as well as assuming oversight over many of the operating and administrative duties, from finance and control to insurance, compliance and many special projects – viz. the Impact Report !?! To be honest, Bill’s been doing a lot of this informally but can now spend legitimate time a couple of days a week to help us put our ship, or maybe we should say ‘our bird’, in better order.
Personally, I am thrilled and excited. There’s no one I can think I would rather work with. I welcome him sharing this job with me, and keeping me on the straight and narrow as he has done since joining the Board many years ago. One other person to thank – another aviator, Bill’s wife Misa. If she hadn’t gotten on his case for spending many volunteer hours with AnCan, Bill wouldn’t have come up with this great solution.
Welcome aboard, Sarge… or should I say, Mr. Prez! AnCan welcomes Air Relief
Non-Conspiratorial Questions around the Biden diagnosis?
One of the things AnCan does best is ask questions. We ask them of you, and we suggest you ask them of others. We do that to make you your own best advocate, and we do it to represent our constituency and keep others honest. We do not do it, by and large, to make political waves although I have been known to voice my deep displeasure and distrust of the current Administration and its Leader.
When I, on behalf of AnCan, raised significant questions around Joe Biden’s diagnosis of metastatic hormone sensitive prostate cancer (mHSPC), it was to make it clear that rarely does this arise out of the blue unless someone has been sleeping on the switch. I stated it smelled fishy and there had to be more to disclose. Sure enough,there was.
As one of the first to question, it was reassuring to see the legitimate press, including the Washington Press and the New York Times, asked very similar questions and quoted highly recognized experts, who posed the same questions.
Several articles also interviewed inappropriate subjects. Urologists who should not be treating advanced prostate cancer, medical oncologists who don’t treat prostate cancer, and worst of all blow hard doctors with blood on their hands.
The NYT’s choice of Hopkins Professor Otis Brawley is the most notable offender. Dr. Brawley, a 66-yr old African American, boasts that he has never tested his own PSA. During his time as Chief Medical Ofice at American Cancer Society, Brawley stopped all patient suport for our disease, and spearheaded efforts to stop PSA screening. He was the driving force behind the USPSTF recommendations not to screen. I place the 35% increase in prostate cancer specific deaths over the past 10 years squarely at his feet.
What are some of these important questions? Why wasn’t Joe Biden screened after 2013? Don’t even raise the fact that he turned 70 and the ‘Guidelines’ don’t require it. #1 – they are just guidelines as Dr. Peter Carroll pointed out in his interview with The Active Surveillor, AnCan Advisory Boardie, Howard Wolinsky. #2, continued screening to at least 75 is recommended if risk factors are present. It’s reported that Biden did have risk factors including urinary issues, and a previous cancer that could have been related to prostate. And #3… he’s no ordinary Joe! As a holder of high elected office, Biden should be held to a higher standard.
By the way AnCan believes all men are entitled to a PSA test no matter their age. PSA testing is about information not treatment. Results and treatment are definitely subject to Shared Decision Making. Who was running Biden’s medical welfare as VP and President?
AnCan would hazard a guess the NIH or the Military (Walter Reade, Fort Belvoir) had a hand… or perhaps an index finger involved. We have our own experience of these facilities. Last time AnCan raised valid questions publicly about their care we were asked to back off. How long has Biden been in treatment – do we know it’s mHSPC? We hope it is but won’t know until he’s been in treatment for a while. Yet his Office tells us it is mHSPC. That gives us reason to ask if he’s been on treatment for a while and more is known. No conspiracy – a question based on public disclosures.President Biden’s poor executive function in his debate performance is very typical of men who have been on Androgen Deprivation Therapy (or more extensive hormone therapy) for a period of time. Yes – it could have been flu/covid/ cold; it could also have been MS or Parkinson’s; and it could have been HT now we know his diagnosis.
There are more questions, and there is probably more to come to light. What gave me pause for thought were the critics who came down on me and AnCan hard. We were accused of conspiracy theory and disrespect to the Bidens… just for asking these questions.
One more question… is this a malevolent sign of our times? People are too quick to assign political motive and divisive intent. It’s sad when enquiring and educated minds are lambasted for raising valid questions that deserve answers. AnCan, and I personally, wish the Bidens well. I have always supported and held him in regard. His disease progression may throw light on what was known on Friday, May 16 so keep an open mind. If anything is to come out of this, better screening guidelines for men over 70, and better supervision of Presidential health would be two good outcomes.
Also more focus on how an orange man of 77 with an intact prostate can possibly have a PSA of 0.10 – or is this just another lie the American public has to eat.
onward & upwards, rick davis, founder AnCan Foundation
Has eating become a challenge due to fatigue or a lack of interest in food? Have you noticed a significant change in your or your loved one’s appearance since starting treatment or diagnosis?
It’s a common misconception that weight loss during cancer treatment is solely due to treatment side effects. While this can certainly be a factor, a more serious condition known as cachexia (kuh·kek·see·uh) can significantly impact a patient’s health.
What is Cachexia and Who is at Risk?
Cachexia, often referred to as cancer cachexia or wasting syndrome, is a complex condition characterized by severe weight loss, muscle wasting, and loss of appetite. It’s not a direct side effect of cancer treatment but rather a consequence of the cancer itself. While it’s commonly associated with cancer, it’s important to note that cachexia can affect individuals with various chronic illnesses, including: Multiple Sclerosis, Sarcoidosis, heart failure, chronic kidney disease, COPD, and more. Certain types of cancer are more likely to lead to cachexia than others. These include: Pancreatic, Lung, Head and Neck, Colorectal, Ovarian, and Liver.
Signs and Symptoms of Cachexia: What Should You Look For?
Recognizing the signs of cachexia is crucial for early intervention and effective management. Here are some key symptoms to watch for:
Unexplained weight loss: A significant and unintentional decrease in weight.
Muscle loss: A noticeable loss of muscle mass, often leading to weakness and fatigue.
Decreased appetite: A reduced desire to eat, even when hungry.
Fatigue: Persistent tiredness and a lack of energy.
Metabolic changes: Alterations in metabolism, including changes in appetite, weight, and energy levels.
Changes in Routine: Unable to do the activities you once could.
If you or a loved one is experiencing these symptoms, it’s important to let your care team know your concerns as soon as possible.
Managing Cachexia
While there’s no one-size-fits-all solution, a multidisciplinary approach can help manage the condition. This may involve:
Dietary interventions: A registered dietitian can provide personalized meal plans to maximize nutrient intake.
Medical treatments: In some cases, medications may be prescribed to stimulate appetite or reduce inflammation.
Supportive care: This includes strategies to manage pain, fatigue, and other symptoms.
Psychological support: Counseling can help address emotional challenges associated with cachexia.
This may mean adding more people to your careteam to support you, such as a dietician (as shown above), physical or occupational therapist, endocrinologist, or palliative care (editors note: we hope you already have a palliative care doctor, AnCan loves them and they can offer you so much support during your treatment!)
Coping with the Emotional Impact
Cachexia can take a significant toll on both physical and emotional well-being for the patient, care-partner, and their families. It’s important to seek support to manage the emotional side effects of the condition. Consider:
Counseling: Individual, couples, or family therapy can provide guidance and coping strategies.
You can also ask your social worker (or for a social worker if you do not have one) for additional resources.
Want to Learn More?
We highly recommend this webpage and fact sheet from our friends at Cancer Support Community / Gilda’s Club. While it is cancer centric, all of the information will be of helpful no matter what your diagnosis is.
By understanding the complexities of cachexia and seeking appropriate support, individuals can significantly improve their quality of life. Effective management of cachexia can help alleviate debilitating symptoms, enhance overall well-being, and improve the ability to participate in daily activities.
Special thanks to CSC for their assistance and incredible resources with this blog post.
AnCan Foundation, the innovator of virtual support groups, is coming to our 10th Anniversary in less than 10 months. We’ve grown – about one-third of US nonprofits fail in that time, and we have flourished. Starting with 3, or was it 4, meetings, AnCan now boasts 33 virtual monthly events for 16 different conditions. If that’s not evidence enough, annually we serve around 7,000 live; approx. 33,000 through our recordings, and we have close to a half-million who make contact with the AnCan logo somehow or other annually. That’s a lot. Watch out for our new Impact Report that’s in the works.
