by Rick Davis | Mar 26, 2020 | Cancer Resources, Blood Cancers, Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
There are so many great sources of highly quality information that we at AnCan do not need to contribute to the overload. But when we see a good article we will bring it to you, especially if it pertains to any of our groups. So here are two that fall into that category.
The first follows up on a queston raised in our Advanced Prostate Cancer Group on Tuesday, when a particpant asked whether he could delay treatment … in particular androgen deprivation and bone strengthening shots. And the week before we had a discussion about hospital visits at this time of virulent crisis. This article from The Washington Post reports on how the Covid19 is effecting several different cancer patients including one advanced prostate cancer patient enrolled in a clinical trial, who has adjusted his treatment.
The second link is to a CURE Talks interview with Dr. Stephen Pergam, Fred Hutchinson Cancer Center, University of Washington and several multiple myeloma patient advocates on the interesection of Covid19 and MM/blood cancers. You can listen to it here .
For us at AnCan, we have definitle seen an upswing in attendance to our meetings. In response we have added two sessions, and two new meetings for blood cancers, and for ovarian cancer.
by Rick Davis | Mar 21, 2020 | Men's Breast Cancer, Recent News
Some of you are quite familiar with our Advisory Board member Richard Wassersug, an internationally recognized expert on androgen deprivation therapy in men. Richard is a research psychologist, and last year we connected him with Peggy Miller at the Male Breast Cancer Coaliton who moderates our Men’s Breast Cancer virtual group. They and others are pursuing a study on how male BCa patients respond to the word ‘survivor’. In Richard’s words:
(Peggy), I and others are collaborating on a survey study right now about how male breast cancer patients respond to the label “survivor”. As you may know, female breast cancer patients overall like that label. In contrast, prostate cancer patients typically do not. We hope to finding out whether this difference is due to a differences in how the two diseases progression and how they are treated, or instead reflect a fundamental sex/gender difference.
We’ve already collected data on about 70 male breast cancer patients, but we hope to double that.
Richard published an essay in Quilette late last month on male breast cancer “Masculinity, Emasculation, and Breast Cancer in Men”…. you’ll find it here. If you are not too familiar with this condition, it has every right to be considered a rare disease based on the number it afflicts ….. although, as Richard points out, male BCa kills more than testicular cancer! Read and learn ….
by Rick Davis | Mar 18, 2020 | Cancer Resources, Blood Cancers, Brain Tumors, Cancer Caregivers, hospice and palliative, Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Webinars, Women's Breast Cancer
Leading Experts Discuss Important Cancer Topics
Make sure you’ve signed up for our upcoming
Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions.
by Rick Davis | Mar 16, 2020 | Health Resources, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
In the dim, distant past of 2011, or was it 2012, I had just been kicked out the support group I co-moderated by a very insecure lead. Rather than the one-on-one interview style he practiced that made the large, weekly group feel they were eavesdropping on a private conversation, I worked hard to promote conversation and bring everyone into play. If the back-and-forth developed a life of its own, moderation was successful. Like a tugboat, moderators could just nudge a little here and there to keep discussion on track while sprinkling information and education into the wake.
So when a good buddy of mine suggested we start an online TV channel, I took him seriously. My friend had been in the virtual meetings world pretty much since inception and encouraged me to explore. I, however, had no interest in talking at an audience – I wanted to converse and interact with it. Support groups were much closer to my virtual ideal than a TV Channel. Moreover, virtual support groups tackled three issues where physical groups got a resounding ’F’.
- Geographical ‘disabilities’ were removed – no one was restricted by distance or remote location
- Physical disabilities evaporated – everyone could join no matter their state of mobility
- Social disabilities faded – those who felt uncomfortable in a physical group or suffered from agoraphobia could attend, and those who were just plain shy could ‘lurk’.
To my amazement in 2012, I found only two (2) virtual support groups on the world wide web; one for post-partum depression, and the other for dieting. In the two-dimensional virtual world of written forums, there were options and I quickly became a celebrity. By providing solid experience and guidance – never medical advice!! – many sought my input. Then I discovered a telephone support group based out of the northern Midwest …. and from thereon history was made.
As possibly the first peer-led support group for any condition, I turned what originated as a men’s psycho-social support come drinking club into a bona fide, condition driven, virtual support group. By advertising on the written group forums, attendance grew rapidly. We went from one to two monthly meetings. Then we split the group by severity of disease – newbies did not want to be chatting with those suffering advanced disease. And soon we had to split again as numbers exceed 30+ participants per group. Within a couple of years, we had four then six groups each month; and, we received endorsements and co-sponsorship from a major support and education non-profit.
The phone platform also seemed inadequate just as virtual platforms became affordable. No longer did you have to commit thousands of dollars to host on WebEx when GoToMeeting and then Zoom catered to the individual consumer. Adding visuals created yet another dimension, bringing the virtual support group experience even closer to a physical meeting. Video was always optional, and you could join by phone as well as online – we strove to maintain the lowest barriers to entry. And our meetings were always free and drop-in … no registration required.
Gradually our moderators learned best practices – how to keep a meeting moving; how to avoid people talking over each other; how to ‘listen’; how to bring everyone into the virtual group discussion. In 2016, our vision got formalized when we founded a non-profit, Answer Cancer Foundation, starting with the six groups then in existence. While all for one condition, my vision was much wider.
We knew that if it worked for the condition we were living with, this same experience could work for other illnesses and conditions …. especially for rare diseases where even in the best circumstances gathering a physical support group was challenging. And for conditions beyond cancer …. and for more than just those living with the condition – like caregivers. In 2019, Answer Cancer Foundation became AnCan as we launched a multiple sclerosis group. And as I write today, we host more than 20 meetings each month for cancer and non-cancer. We are proud to offer two virtual groups for rare diseases, and about to introduce new virtual meetings for blood cancers, and for ovarian cancer.
So here we are in 2020, in the midst of a global pandemic living within the parameter of social distancing. Many are suddenly recognizing the value of virtual meeting places. Some, like my nemesis the lead moderator mentioned in the first paragraph, had the audacity to tell a telcon of support group facilitators last week, that Zoom is inexpensive and everyone’s answer; he had tried it for the first time earlier in the week. I could not resist piping up that AnCan currently hosts nine (9) virtual meetings per month just for our cancer; that we have been doing so for eight years with our co-sponsor who, by the way, was hosting the telcon; and, that we would be delighted to share our know-how with anyone that needed help. And oh yes … that GoToMeeting offered a free room over the next 3 months for anyone that needed!
by Rick Davis | Mar 8, 2020 | Blood Cancers, Brain Tumors, Men 'Speaking Freely', Men's Breast Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
Like many of you this week, I have been reading multiple articles about how the corona virus may effect those living with cancer and how best to protect ourselves. Many of us who did not take this threat too seriously 3 weeks ago, are now reevaluating although I remind everyone that it may be no worse than the influenza threat that kills many each year – albeit we don’t read about it daily. WHO estimates between 250,000 – 650,000 die from influenza annually.
Amongst several articles that are in my inbox, I have a couple of first hand experiences. The first is from Shira Zwebner, a regular contributor to the CURE website, that you’ll find here; and the second is by our Board Chair Peter Kafka, reprinted from his meeting reminder to the virtual group Peter moderates. (rd – apologies for all the typos first time around; forgot to proof!!)
What A Difference A Week Makes
All of the sudden the world is thrust into a new paradigm in reaction to the onslaught of the Covid-19 coronavirus. I suspect that many of us can tell stories about how our lives and communities are already being impacted by this new threat. It looks like we are all in for quite a ride for some time to come. Some might discount these events or downplay the seriousness of the virus, but it can’t be denied that there is an overriding sense of fear and anxiety in many quarters.
How does this relate to those of us dealing with cancer? Oddly enough there are many crossovers and “take homes”. Who among us did not feel fear and anxiety and a sense that our world as we had known it was coming to an end when we were first diagnosed with this cancer? I know for myself that fear was a dominant feeling. Because it was all so new and I was unprepared and uninformed my emotional response was quite out of control. Fortunately, I found support quickly and was led to experts in the field who could set me on a steady course and explain exactly what was going on and help put things in perspective.
Most of us have found that our worlds did not completely fall apart. Yes, many things may have changed – they certainly have for me and those closely around me. But life has gone on and adjustments have been made. We humans are remarkably resilient creatures and can adapt to amazing challenges and circumstances. For myself, I have just embarked upon a heavy-duty regimen of chemotherapy for my aggressive advanced prostate cancer. Perfect timing to put myself into a situation where my immune system will be further compromised by the chemotherapy infusions. And what a time to have to show up at our local hospital every three weeks for a day of infusions. So much for my luck.
I guess I am one of the lucky ones who has jumped to the head of the line in the high-risk category for dying from Covid-19 Coronavirus, over 70 years old with cancer and a compromised immune system. But somehow, I am just not over consumed by this thought at the moment. I am not going to be cavalier and take stupid risks, but I can really only deal with one big threat at a time and for me it happens to be the prostate cancer. I think my ongoing 6-year journey with this disease has put me in a mindset of preparedness. Fear is no longer driving my decisions and actions. Understanding and intelligence rule the day for me.
by Rick Davis | Mar 6, 2020 | Blood Cancers, Brain Tumors, Cancer Resources, Complementary Medicine, Exercise, Men's Breast Cancer, Prostate Cancer, Women's Breast Cancer
I am copying a post recently received from New PCI publcizing a short ASCO survey on how you embrace exercise and diet. As many know, AnCan strongly endorses exercise as part of any cancer management program; and sensible diet may also be significant and rarely hurts. I have taken the survey and encourage anyone previously diagnosed with any type of cancer to do so. (rd)
The American Society of Clinical Oncology (ASCO) has put together a brief research survey to learn more about patients’ experiences with cancer care. Specifically, ASCO is interested in patient’s perspectives on how things like diet, exercise, and weight management are incorporated into cancer care.
The survey should take most people no more than 10 minutes maximum to complete. All questions are optional, and ASCO has stated clearly that no personally identifiable information will be collected.
If you are an individual with a personal history of prostate cancer (or cancer of any other type), please click here to take this patient survey. Thanks for your help to ASCO in seeking to improve cancer care.
If you know others who are > 18 years of age and who have been diagnosed with any form of cancer, ASCO would also appreciate it if you passed information about this survey on to those people too. ASCO is seeking the widest possible range of responses to this survey from the cancer patient community.
