Listen to Jake Hannam outline the groups we run at AnCan.
And visit our YouTube Channel, if you want to listen to any recorded groups ….. for prostate cancer, MS, or sarcoidosis as well as excellent webinars on various topics like diet, exercise and genome sequencing.
Happy holidays … onward & upwards!
Whilst trying to clear my e-mail backlog before year-end, I came across this article from NYU Langone Health Center with the self-explanatory title, “Breast Cancer Screening Found Effective in Men at High Risk for the Disease.”.
In deference to MBCC and our male breast cancer group, that is currently on holiday hiatus and restarts in January, I am posting it. Men with pertinent risk factors like a BRCA mutation, family history, or Ashkenazi ancestry should take particular note.
O&U ….
A report from MedPage Today last week suggests there is no role for denosumab (Xgeva or Prolia) in early stage, high risk breast cancer that is bone mets free. Read the article here.
There are many similarities between breast and prostate cancer in their respective disease patterns. Our PCa groups often discuss the timing of bone strengthener use. A quick review of the literature reveals one meta-study that supports the use of denosumab.; however it does not analyse the results by disease stage of those studied.
This is of personal interest to the Author’s experience. I was placed on bone support treatment at the outset of 28 months hormone deprivation therapy because my bone density was borderline osteoporitic, albeit no observed bone mets – and it helped me over the course of my treatment. Since baseline bone density at start of treatment is a relevant factor, why was that not factored into the equation?
Our good AnCan friend, medical journalist Howard Wolinsky, has published an article in the magazine, Chicago Medicine investigating the controversial contrast agent gadolinium used in MRI scanning. Read it here.
This topic is often discussed in AnCan’s Active Surveillance Prostate Cancer Group. Congrats, Howard – c’mon back to our virtual groups to keep us informed!
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.