Listen to a heart warming conversation on our AnCan’s MS Virtual Peer-Led Support Group last night. Topics coverd included:
Newly suspected diagnosis
Is there a hereditary aspect to MS?
Self-advocacy
Eye issues
MS and the Holidays
Please note that since the 4th Tuesday of December is Xmas Eve, we have changed the December meeting date only to December 10 @ 8.30 pm Eastern. We will revert to the 4th Tuesday or each month thereafter.
The example used is an elderly man with prostate cancer, but frankly this approach is applicable to any type of cancer. And this approach makes a mockery of one of my favorite straw men, the USPSTF, who does not recommend PSA testing for men over 70. HELLO USPSTF ….. 70 is the new 50!
If you are over 65, consider raising geriatric assessments with your medical oncologist.
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.
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!
Prof Bill Burhans’ memorial; how does enzalutamide/Xtandi work; debulking the primary tumor; glucose and glucosamine; does your age influence treatment delivered?; PBRT vs IMRT; milk based proteins, T.Colin Campbell and more; testosterone based therapies; End-of-Life planning
UsTOO Chicago webinar; Intermittent Hormone Therapy (IHT); Taking a Virtual Group break; resumption after IHT – scan use; MSI; strategies on recurrence; Firmagon vs the agonist LHRH’s; post-surgery with local spread; repeated C-11 sans; nocturia drugs; using medical marijuana; Ciitizen program for medical records; germ line testing with Invitae
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.’
Prednisone with Zytiga; fighting mental acuity on Zytiga – Ritalin, exercise; Zytiga and dreams; experience on darolutamide Nubeqa; NIH scan protocol; when to get your tumor sequenced; a caregiver’s experience; what your caregiver needs … intimate relations; getting olaparib prescribed; surgery follow-up with high Gleason; CBD for hot flashes; intermittent hormone therapy
Intermittent hormone therapy with 2nd line anti-androgens; getting approved for darolutamide (Nubequa) may depend on your screening method; HT, cognition, dementia and more; stretching out Xgeva; scanning at very low PSA levels; darolutamide has positive cognition side effects; focal cryotherapy for metastatic lesions; is oligometastatic radiation, curative, management or palliative?; the meaning of Median Progression Free Survival; FDA Approvals ….. expedited, breakthrough etc – can patient advocacy help?; Ethics of prescribing hormone therapy
And here’s a great article we saw this morning on hormone therapy and cognition by our friend, Dr. Chuck Ryan!
Over the week-end I received an e-mail from Mike Crosby, Founder of Veterans Prostate Cancer Awareness inviting Peter Kafka, our Board Chair, and myself to attend a meeting in DC with the VA. The invitation noted a significant increase in de novo metastatic diagnosis amongst Veterans based on a recent PCF/VHA study.
Well HELLO…….. AnCan wants to note that 1) this is not just amongst Vets alone, and 2) we are we hardly surprised based on the ‘criminal’ 2012 USPSTF PSA Advisory that condemned tens of thousands of men to death?!
Some of us spoke up loudly at the time – we did not need to be Carnac the Magnificent to see the implications of this shortsighted, idiotic recommendation not to test for PSA. Of course more men would only be diagnosed once symptomatic … and then too late. PSA testing is about information not treatment – the UPSTF failed to make that distinction.With not even a single urologist or genitourinary medical oncologist on their panel, this bordered on USPSTF negligence; we said so at the time. And where was the VA voice then – they could have brought their weight to bear on the USPSTF but I don’t recall them doing so … correct me if I am wrong.
ZERO is also part of this current initiative. They are referred to as the most influential patient advocacy organization in the USA – maybe on The Hill but beyond that is questionable. Whenever we have tried to work with ZERO collaboratively, they have always shunned us … and others. So we now issue an invitation to ZERO as well as all the other prostate cancer organizations to work TOGETHER to raise awareness of our insidious disease; not just for Vets but for all US men, especially those at greater risk for de novo metastatic diagnosis.
Over the week-end I received an e-mail from Mike Crosby, Founder of