by Rick Davis | Nov 24, 2019 | Brain Tumors, Cancer Caregivers, Health Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Prostate Cancer, Recent News, Women's Breast Cancer
Our own Peter Kafka wrote this commentary in the reminder for the virtual group he moderates. We think it applies to all chronic and serious conditions ……
Bureaucracy is one of those words that all my life I have never been comfortable spelling. Even today in my early 70’s I still have to double check the correct spelling. Perhaps this is indicative of the fact that I have never really come to peace with the necessity of bureaucracy. Even in my final career spending 24-years of my life working for a federal agency, The National Park Service, I was always uncomfortable and tried my damn best to break the mold and not be a government bureaucrat. I did not want to be the guy in the uniform telling the public; “NO!”
What does this have to do with Prostate Cancer, I hear you ask? Well, if you have not run into the obstacles of the Medical bureaucracy yet, you have not traveled very far in your cancer journey. “Why do I have to wait two months to see a doctor?” “Why does it take two weeks to get my test results?” “Why can’t I see another doctor and get another opinion?” “Why do I have to communicate through the computer portal?” “Why won’t my insurance pay for my treatment?” “Don’t you know that I am sick, I have cancer, my anxiety level is through the roof and I just don’t have the energy to fight for my health.?”
Perhaps none of this is familiar and you have been sailing ahead on calm seas with a steady breeze. But my guess is that many of us have ongoing challenges with the medical bureaucracy.
In my current circumstance I find myself with a rapidly rising PSA and a 5-week long wait for a trial scan before I can consider treatment. All I can tell myself is; “calm down Peter, you’re not going to die”. Really? Who says?” Perhaps it is the experience of my years listening to others in our AnCan Online support groups and other meetings where I have heard of men waiting much longer and enduring many more obstacles than myself, but still…..
I tell myself that at least I am in America. At least I can ring the bell and try to get someone’s attention. And the medical bureaucracy responds: “BE PATIENT!” What do you think I am? I am a PATIENT-MAN! That is why I am here, waiting for my 5 minutes with the doctor, trying to track down my test results, trying to make another appointment that works for me.
You certainly have my sympathy. I don’t claim to have the answers to this dilemma. I have been trying to manage my own health care from 2,500 miles away for over 5 years now and it hasn’t gotten easier. But I am still a PATIENT-MAN and with your help and support I will continue this journey and try not to take the Bureaucratic – “NO” for an answer, at least some of the time.
by Rick Davis | Nov 22, 2019 | Advocacy, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Prostate Cancer, Recent News, Women's Breast Cancer
More on The Language of Cancer …. The Language of Respect! Earlier this year AnCan ran a couple of webinars on The Language of Cancer – please search on this page under ‘Language’ and you’ll find links to the earlier webinars and articles.
We at AnCan think that the language used when the medical world interfaces with patients could certainly use some improvement – and not just w.r.t. to cancer. In preparing for our second webinar, I ran across an excellent discussion on Medscape. Dr. Tatiana Prowell was one of the participants, and she has just proposed guidelines for how the medical community should refer to patients – and to each other, for the upcoming 2020 ASCO sessions. Unfortunately I could not figure how to download other than in photo format that I am inserting below and hope you can download and enlarge! Failing that, read it on Twitter https://twitter.com/tmprowell/status/1197543809594351616 .
We at AnCan endorse Dr. T’s recommendations ….. patients don’t fail treatments; treatments fail patients!
by Rick Davis | Nov 14, 2019 | Uncategorized, Cancer Caregivers, Cancer Resources, Health Resources, Men's Breast Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
We often speak about genomic testing to identify mutations! Why? – because identifying a mutation may open the possibility of using a ‘precision medicine’ that may come into play if you have difficult disease to treat …. for any type of cancer and other conditions.
Our Speaking Freely moderator, Rich Jackson, recently attended a support group meeting that received a presentation from INVITAE , a genomic testing lab that offers a comprehensive germ line or inherited genetic mutation test. Their tests may be offered at no cost depending on your disease and its demographics. For a full list of currently sponsored (free) tests, please visit https://www.invitae.com/en/sponsored-testing/ . You can also call Invitae at 800 436 3037.
Rich writes:
INVITAE is offering hereditary genetic (germ line) testing with a maximum out of pocket expense of $250.00 – and the cost could be $0.00. The genetic testing must be initiated by the patient who also names a doctor’s office that controls their Personal History Information. It is saliva based and tests for 47 specific markers including BRCA and Lynch Syndrome markers. Results are returned to the doctor to be communicated to the patient. INVITAE also provides access to genetic counseling.
Currently, prostate cancer patients qualify for free genetic testing provided they are Gleason 7 or greater at diagnoses (as may other conditions like pancreatic cancer and chronic kidney disease – see above for more information. rd).
INVITAE creates a ‘tag number’ to identify the sample that references back to the medical office, but for their purposes the information is anonymous. The company gathers large pools of patients for a given condition that they can then market to drug companies with the purpose of identifying prospects for clinical trials based on genetic markers.If a patient is a candidate, their doctor’s office will be contacted.
As explained by the regional manager w.r.t. prostate cancer:
‘A drug company would have a new drug to trial which they thought would work better with certain genetic markers. The company would contact INVITAE looking for men that matched. INVITAE would check their database, locate the identifiers of men that matched and contact the doctors office with the information. The doctor would contact you and pass on the information and how to contact INVITAE for additional information.’
by Rick Davis | Oct 28, 2019 | Cancer Resources, Cancer Caregivers, Health Resources, Men 'Speaking Freely', Prostate Cancer
Peter Kafka’s latest thoughts on men, risk and clinical trials!
I was reading the other day about the challenges of getting an adequate number of men to subscribe and participate in certain clinical trials for prostate treatment. It had to do with “risk”. In general, men are bigger risk takers than women. In my career with the National Park Service I was always dealing with the seeming dichotomy between safety and risk. Working under three successive female superintendents I was at times admonished for not putting “safety first”. But without a certain amount of risk, nothing gets accomplished.
I am not certain where I am going with this thought, but I believe that the willingness of men to take risks has been a great benefit to the advancement of medical science on many fronts. Prostate cancer detection and treatment is very different than it was even five years ago and a lot of this has to do with the willingness of men to take risks. Even the great numbers of men today who choose to follow the path of “active surveillance” rather than having their prostate surgically removed or radiated is indicative of a willingness to “risk” living with cancer.
I know for myself that I am going to be faced with some treatment decisions in the coming year. The decision tree is always a challenge to climb. Which limb is sturdy enough to hold my weight? I think that this is one of the reasons I so enjoy working and listening to others in our support community. Sharing our individual experiences on this journey is enlightening. There are not many rights and wrongs, but there are plenty of rights and lefts. And what is a right move for you might well be a left move for me.
by Rick Davis | Oct 18, 2019 | Women's Breast Cancer, Advocacy, Cancer Resources, Men's Breast Cancer, Prostate Cancer, Recent News
One of my fellow Foundation Medicine Patient Community Council members, Karen Peterson, recently featured on the Today program speaking about how she self-advocated to receive genomic testing … that in turn led to very successful precision medicine treatment with an immuno-oncology drug. You can watch Karen here .
No matter what the chronic condition with which you live, this is a wonderful example of the value in informing yourself then advocating on your own behalf to your medical team. If AnCan’s tag line was not “Advocacy – Navigation – Support”, it would be “You Are Your Best Advocate!”
Btw, if you missed our recent webinar by Dr. Larry Fond on Immuno-Oncology, replay the recording and download the deck at https://ancan.org/5th-monday-webinar-dr-larry-fong-explains-immuno-oncology-mon-sept-30-8pm-edt/
