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!
Topics discussed:
Is it OK for PSA to stabilize in the 20’s?; debulking the Primary tumor and iterating metastatic cells; repeating bicalutamide use; anti-fatigue drugs; generic abiraterone; shingles vaccines; HERO trial for relugolix; switching LHRH drugs; monotherapy anti-androgen treatment; using Technitium99 scan for darolutamide; can your MSI change over time?; pembrolizumab for PCa; your doctor’s attitude to you and your treatment; separating designated resources in your final wishes.
To view links referenced in this recording, please visit our Prostate Cancer Forum
Peter Kafka’s thoughts this week on generosity at this time of year:
I live on the same property as two of my young grandchildren here on Maui and it is very special being this close to them and watching them grow and mature. One of the things I wrestle with especially during what we refer to as “the holiday season” is how to change the focus from Getting to Giving. I wonder if generosity is a value that can be taught or is it a characteristic that we intrinsically have and choose to express or not. Many years ago, my own two sons taught me an important lesson about generosity that I have never forgotten.
We were living in Brooklyn; NY and my sons were perhaps 6 and 8 years old. They wanted to go out to lunch on their own at a neighborhood Chinese restaurant a block or two away. I gave them a $20 bill and my wife and I watched them disappear around the corner from our 4th story window. About 25 minutes later they returned, all smiles about this big adventure. As I listened to their story, I asked my sons if there was any change left from the $20 bill, knowing that the lunch special was about $3.50. They replied that they left the remainder for a tip, stating that the waitress was “so nice” to them.
I was about to explain to them how to go about calculating a tip by percentages when I bit my lip and shut up. Who was I to stifle their natural spirit of generosity? Generosity is something that comes from the heart and not the calculator. I trust that my sons, and their children live by this maxim still, but I can’t control that. All I know is that something shifted in me that day in terms of generosity.
Not a day goes by this time of year when my mailbox is not stuffed with donation requests from a wide variety of social, health and environmental non-profit organizations trying to tap into my spirit of generosity. My desk is full of greeting cards, address labels, calendars and such. Things that I don’t need but have a hard time just trashing. I get it, the timing and the need. And I do support a number of these organizations throughout the year.
We at AnCan.org have not to date taken this approach of frequently soliciting donations. We just continue on with our effective model of providing weekly live On Line/ telephone support for men and women dealing with difficult medical and emotional issues. We provide a forum where people can connect with others and form significant friendships and support networks for their particular situation. To date, none of our moderators and staff are paid. Our service is a gift of our passionate hearts. Others have helped us along the way and we are compelled to pass it on.
I know that many of you have found the means within your budgets to help us at AnCan continue this work and expand into other avenues of service. Thank you! We value your generous participation.
Through my attendance at HealtheVoices 2019, I had the good fortune to meet Andrew Schorr, the founder of Patient Power. In their own words…… Patient Power® is devoted to supporting cancer patients, care partners and other loved ones through education and advocacy – to get the right treatment at the right time working with the right healthcare team.
A couple of months later I was approached to do an interview with their Prostate Cancer Community Manager, Andrea Hutton that I just learned was published on their PCa page in October. You can watch for yourself by clicking on this link ; hopefully for our veterans, there won’t be too much new. And from my standpoint, it’s a great visual lesson in how to improve my interviewing technique!!
One of AnCan’s favorite doctors, who we are privileged to name on our Advisory Board, is palliative care specialist, BJ Miller. I have had the wonderful fortune to work with BJ for 10 years or so, and know first hand how he has provided lifesaving support to a number of our participants treated at UCSF, both physically and mentally!
BJ is an extraordinary physician with an equally extraordinary story. He is a triple amputee – prior to med school, and if you listen to his interview today with Terry Gross on NPR’s Fresh Air you will learn how that career decision came about.
What Terry failed to mention is that BJ’s Ted Talk has very nearly 10 million views since first being posted in 2015 – now that’s remarkable in itself! He has just published a new book with Shoshana Berger, A Beginner’s Guide To The End that I am currently reading.and recommend.
Ancan is delighted to announce a new virtual group for the rare disease, sarcoidosis. Sarcoidosis effects between 150,000 and 200,000 in the USA, with an estimated 1.2 million individuals effected worldwide. Leaning on Wikipedia:
Sarcoidosis is a disease involving abnormal collections of inflammatory cells that form lumps known as granulomas.The disease usually begins in the lungs, skin, or lymph nodes. Less commonly affected are the eyes, liver, heart, and brain. Any organ, however, can be affected. The signs and symptoms depend on the organ involved. Often, none, or only mild, symptoms are seen. When it affects the lungs, wheezing, coughing, shortness of breath, or chest pain may occur. https://en.wikipedia.org/wiki/Sarcoidosis
AnCan is partnering with Sarcoidosis Online Support Group, a collaborative of several sarcoidosis support organizations from around the US led by Frank Rivera, a renown sarcoidosis patient advocate. This is AnCan’s first rare disease virtual group and fulfills the vision to make peer support easier for people living with rare and chronic conditions where others living with your disease are hard to find.
1st Tuesday of each month at 7 pm Eastern
3rd Thursday of each month at 7 pm Eastern
Joining Instructions https://www.ancan.org/joining-instructions/
For more information, please visit our Sacoidosis Virtual Group web page.
Topics discussed
Prolia vs Xgeva for bone strength; generic vs branded abiraterone; abi protocol with food; comparing Plan D drug coverage; back pain with advanced PCa; CBD for hot flushes; Casodex role in advanced PCa treatment; neuroendocrine/small cell/morphed PCa treatment; bone biopsies and scans
It’s that time of year when we decide if we are going to change our medical coverage for the coming year – whether it’s a switch during open enrollment or changing our supplemental Medicare insurance.
Over the past 12 months, I’ve discovered that it serves you well to avoid coinsurance. I am sure there are many reasons, but together the two laid out below make co-insurance requirements as welcome as a fish head on your doorstep!
But before you smell how bad ‘coinsurance’ can be, let’s explain what it is. Unless you have insurance that has no additional obligations beyond your premiums and deductibles, you will be required to make additional contributions for your health care on each provider visit. The payment comes in one of two flavors:
Co-pays give you the comfort of knowing how much a visit will cost you – even if the pain of the amount balances the security of knowing how much. Co-insurance is open-ended!
If you have ever tried to find out in advance how much a procedure will cost, you will know why I say open ended. You can’t find out what it will cost, even if you try to. I needed an MRI earlier this year and discovered that the cost – or should I say the amount on which I would be charged 20%, was more closely held than the President’s financial statements.
Despite calls to several providers to price shop, and to my insurer United Healthcare who assured me they would identify my exposure, I never found a reliable number – and I had the correct billing code. The Director of Radiation Services at my local in-network hospital, was equally perplexed – she could not tell me what it would cost me other than it would be cheaper at their outpatient radiology offices than in the hospital. And the number provided by the radiology office bore as much resemblance to the amount finally used to figure my co-insurance as an orange does to a banana.
When that bill finally arrived this week, the full MRI cost was $4587 (!!!); the contract cost between the provider and the insurer was $824 of which my share was $$165. I had been told ahead of time the cost would be $358 and I would pay $72.
And even if you find the correct contract cost between the provider and the insurer, Medicare patients face a second issue – sequestration! What the heck, you ask, is sequestration. Well it’s an excuse on the part of the insurers to increase your co-insurance. Evidently ever since 2014, the insurers have actually paid the Providers 2% less than the maximum allowable amount approved by Medicare and used to determine your co-insurance billing. So in fact the patient pays a higher co-pay, the insurer pays the Provider less and it pockets the difference. This is ‘clearly’ explained on the back of my Medicare Monthly Explanation of Benefits in a box that states,” Plan Share may include a 2% Reduction for Sequestration’!
Bottom line – avoid co-insurance. And the good news for me. Next year my policy has a $125 co-pay for MRI’s versus a 20% co-insurance. And by the way, I took up the difference in my MRI payment with the Provider based on the pre-visit quote of $358; they agreed to waive the difference – you are your best advocate!
Topics discussed:
Remembering Thibeaux Lincecum; SSDI approval won; new NHI PSMA initiatives – scan & curative; Paget’s Disease confused with PCa; bone biopsy protocol; biopsy slide preparation; denosumab – Xgeva v Prolia; PCRI recordings; recovering from RRP; our own mortality; does testosterone recovery impact PSA readings; glucose and PCa