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!
by Rick Davis | Feb 4, 2020 | Blood Cancers, Advocacy, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Women's Breast Cancer
Kudos – or as Ali G would say, “RESPECT” – to our newest Moderator (well, almost!), Richard Farmer. Richard and Kenny Capps, of Throwing Bones for a Cure, are planning to launch an AnCan blood cancer virtual group within the next few weeks.
In the meantime, Richard just published Reflections On The Journey of Cancer and Marriage in Cure’s online magazine. You can read it here. Nothing comes easy …..
O&U, rd
by Rick Davis | Jan 29, 2020 | Men 'Speaking Freely', Cancer Caregivers, Cancer Resources, Complementary Medicine, Health Resources, hospice and palliative, Men's Breast Cancer, Multiple Sclerosis, Prostate Cancer, Recent News, Sarcoidosis, Women's Breast Cancer
Loss comes from many sources …not losing a loved one alone. How we, as men, grieve a loss can be complex and insufficient. I note how this author is still wrapped in deep mourning after several years … despite his own tips.
Our thanks to John Novack, our buddy at Inspire, who sent this article that appeared on the nextavenue website.
O&U, rd
by Rick Davis | Jan 26, 2020 | Advocacy, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Prostate Cancer, Recent News
Once more, our Board Chair Peter Kafka has words of wisdom in the face of progressing disease:
Many years ago, people used to bequeath their bodies after they died for medical research. So little was known about the mysterious way the human form worked and all the intricacies of the many parts. In the world of prostate cancer, it appears that more significant knowledge and understanding comes from the experience of those of us living with and managing this disease. Why wait until I am dead when I can bequeath each day of my life to the expansion of knowledge and understanding of this crazy disease that affects each man a bit differently.
The other day I was asking myself, “why am I moderating the AnCan Low & Intermediate Prostate Cancer group?” A fair question since from the onset 6 years ago my disease was anything but low or intermediate grade prostate cancer. Perhaps it is because of the plethora of treatment modalities I have utilized in these past six years.
I can speak from experience about blind biopsies, pathology reports, multi-parametric MRIs, CT, bone and PET scans, Robotic prostatectomy, urinary retention, Indwelling and self-catheterization, incontinence, ADT, including three kinds of second line anti androgens, intermittent ADT, IMRT and Proton Beam radiation, two kinds of PSMA scans, germline genetic testing, somatic genome testing and the vital importance of record keeping. I think I have left out a few.
So, when my disease progressed recently as evidenced through a PSMA scan and biopsy and my medical oncologist brought up the notion of chemo therapy I did not greet the news with an attitude of “ABC” (Anything But Chemo) but rather “Bring It On”.
By the time I am done with this disease, or it gets done with me, I will have quite a wealth of experience to share. My medical oncologist called me “an outlier” the other day for a variety of reasons. As a child of the 60’s I thought I was all done experimenting with drugs. Little did I know! (Yes, you can laugh here – I am). I think that the opportunity AnCan provides for us to share our stories and really hear each other and fully understand the concerns and issues has really helped me navigate this road these past six years.
