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 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.
by Rick Davis | Mar 5, 2020 | Advocacy, Blood Cancers, Brain Tumors, Cancer Resources, Men's Breast Cancer, Multiple Sclerosis, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
Our Board Member and Moderator, Ken Anderson resides in Phoenix and is living with metastatic prostate cancer. He recently uncovered this article on a longstanding controversy over why many trials are not well reported. (rd)
https://www.sciencemag.org/news/2020/01/fda-and-nih-let-clinical-trial-sponsors-keep-results-secret-and-break-law
Seems the topic of clinical research and the data identified when the trials conclude has been around for years but one that I have just recently been forced into exploring in depth. At this point in my prostate cancer journey, certain second line hormone threapy drugs, that I would have hoped extend my life for years, have failed after just a couple months. This seems to be true for others and at the moment no one seems to know why. Is it from starting up front with aggressive treatments like chemotherapy? That may have forced my cancer to change just enough so something within the cancer cell activated and my cancer no longer has the required structure to allow these newer drugs to help extend life.
At this time I am fully aware that managing disease progression and cancer burden is the goal. As we move through these drugs and exhaust the Standard of Care outlined by our medical oncologists, our next option is to look for clinical trials. The data from these trials, both good and bad, has value. I can only hope that even when the data is not published, it is at minimum shared among our finest medical institutions and doctors.
An article published in Science this past month helps outline some of the Centers of Excellence that are doing a fine job with making the data available and others that are not doing so well. Find the article here.
We can only hope that the FDA and the NIH will start to use the power they do have to force more active reporting. The data from these trials, no matter the outcome, should be published in a timely manner.
by Rick Davis | Feb 28, 2020 | Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, Men's Breast Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
This past Tuesday, we discussed the impact of the corona virus on those living with cancer and suggested some risk mitigants – you can listen here.
The following day, CURE posted their own article that we are linking –
….. but remember, you heard it here first!!!
O&U, rd
PS AnCan is not so sure about cancer drugs manufactured overseas – regulation is VERY lax. Plesae see our earlier post by Len Sierra .
by Rick Davis | Feb 23, 2020 | Advocacy, Cancer Caregivers, Cancer Resources, Health Resources, Prostate Cancer, Recent News
Read Peter Kafka’s recent thoughts on getting your medical team to work in unison. This is not a hypothetical either – Peter has a quarterback doc in S. California, lives on Maui, and wants to do chemo locally. (rd)
A Tale of Two Doctors
I know that some of you, like myself, rely on the expertise of a doctor at a Center of Excellence or a larger medical facility that might be a good distance away from home and then choose to get treatment for your disease locally. This brings up the situation of two doctors communicating and working together on your treatment plan. This is the circumstance I find myself facing at the moment.
For the past six years I have relied upon a trusted genitourinary medical oncologist, Dr. Jeffrey Turner at Prostate Oncology Specialists, to guide and manage my treatment course on this aggressive prostate cancer journey I am on. Now that I have progressed to the point that a regimen of chemotherapy is called for, I have chosen to carry out this treatment at my local cancer center here on Maui. So, I have been interviewing the few Maui-based medical oncologists to determine who could work under the direction of Dr. Turner.
One of the doctors I met with the other day was a young man who appeared to be quite knowledgeable, not long out of medical school and therefore perhaps lacking in practical experience. This doctor let me know right out of the gate that he did not agree with Dr. Turner’s treatment plan. He thought it was far too aggressive and that he would not advise it. He had statistics and studies to back up his argument. I think that he had my “best interests” at heart, letting me know that the side effects of chemotherapy can be quite harsh that is why he utilizes this protocol further along in the journey.
I listened to his argument, and understood where he was coming from, but I realized that he, like many doctors was more interested in treating the disease and not the person. Good medical schools can probably be quite proficient in teaching doctors how to select the right treatment modality off the shelf for any particular disease. But behind the disease is a person – me – who might present some unique aspects of the disease that require thinking outside the box and perhaps a more aggressive approach to treatment than the “standard of care”.
Convention says that the English alphabetical order begins with A and ends with Z. But if we are treating the person rather than just the disease it might be called for to end the alphabet with WZYX. We haven’t left out anything, just changed the order a bit. I think for those of us who might be facing (prostate) cancer with perhaps some unusual factors, it behooves us to find expert physicians who will manage the treatment of US and not just the disease. And then if necessary, find a local doctor who will coach on the field. And yes, I did find my man!
Editor’s Note – this is not a new problem to us. Just recently another of our participants asked his local oncologist to speak with his QB doctor at a renowned Center of Excellence in another state. The call took place in the patient’s presence, they waltzed around each other and appeared to arrive at the same conclusions, when in fact they did not agree at all. The call was not conducted on a speakerphone.
The lesson here is to make sure you are party to 3-way conversations. Doctors may accord each other professional courtesy before considering the patient’s interest. At least be sure what each one is suggesting before they speak so you can challenge an unexpected final recommendation.
Remember, YOU are your best advocate!