Editor’s Pick: Should a man with aggressive disease (Gleason 4+5) trade off allopathic medicine for QoL?
Still no GtM transcripts ….. and we had a lot of technical difficulties with audio this week – apologies!
Gleason 8/9 diagnosis – what next?; QoL vs allopathic treatment for another G9 man who deferred action; monitoring post-18F DCF Pyl scans; Intermittent HT working; frequency of scanning with metastatic disease; experiencing docetaxel + carboplatin; chemotherapy + darolutamide; leg cramps on startin abiraterone + prednisone
Jane Brody, the New York Times doyenne of medical journalists, has recently penned two articles on the PSA test and Prostate Cancer Active Surveillance (AS). I use the term ‘doyenne’ with the greatest respect to our Advisory Board Member and AS Moderator, Howard Wolinsky, another fine medical writer, who ironically Brody prominently biographies in her second piece. Congrats to Mr. W !!
The articles, while informative and generally helpful, lack perspective and accuracy. I would not go quite so far as to be grouped a bedfellow of “The Chumpster” and charge this widely read and esteemed daily with ‘Fake News’ ; but errors of inclusion and ommission are all the more significant given the prestige of the New York Times. Here are just a few suggested corrections:
The PSA test is about information NOT treatment . At AnCan we strongly endorse widespread PSA testing because if you don’t know, you can’t treat. Overtreatment is down to poor communication between doctor and patient …..NOT the test.
The quoted European PSA study was actually corrected post intial publication and its results endorse PSA testing.
Epidemiological measures like the number of tests needed to save one life are infuriating to this pundit …… how do you value a life?
There is no mention that prostate cancer specific deaths have actually risen in the past couple of years. Is it a coincidental correlation that this follows the USPSTF recommendations against testing by a suitably long enough time period to allow disease specific death? Both Howard (on MedPage Today) and I have written about this – see these Blog post.
Dr. Eggener at my alma mater, the University of Chicago, is reported to have indicated about 5-10% of men choosing active surveillance progress and require treatment. In our view that number is grossly understated – Dr. Peter Carroll’s UCSF cohort reports it at much closer to one-third, and I believe that has been endorsed by other studies like the Canary Trial, and Dr. Klotz’ Sunnybrook cohort
Gleason 7 disease, whether it be 3+4 or 4+3, is never low risk. Anytime you have a 4 in your Gleason score, you are at least intermediate risk, and your prostate cancer must be treated seriously ….. that does not mean certain men with 3+4 Gleasons cannot consider AS. They can, and there is extensive literature.
Not all Gleason 6 disease should be reclassified IDLE , Dr. Eggener- it depends vey much on volume.
I could go on … but you get the idea! And it does not take away from the deserved kudos for our intrepid AS Warrior, Howard Wolinsky, who we recently welcomed as an additonal moderator to our Active Surveillance Prostate Cancer Virtual Group. That is becasue we are expanding the AS moderator team to accomodate a second meeting in response to the enthusiastically large atttendance for just one meeting a month! That, by the way, is this Wednesday, March 3 …. please join us.
Those of you who have followed me for years know I am totally committed to exercise. I strongly believed and endorsed its positive effects for disease control, especially for cancer. long before it was fashionable or well documented. I started a cancer exercise program at UCSF within 18 months of being diagnosed myself in 2007, that has flourished. At the time there was a paucity of evidence …. now it is abundant. Some of that evidence is well documented on the Research Page of our MedaFit site.
Our regular paritcpants in the High Risk/Recurrent/Advanced Prostate Cancer Virtual Group will know we have two particpants who swear by Dragon Boat Racing ….. Richard Foody who paddles for the MSKCC team.trained by guru Donna Wilson, as you can see.
And Advisory Board Member, Richard Wassersug PhD who paddles out West for his Vancouver based Butts in a Boat team. Richard’s colleagues recently published an academic paper in the February 2020 Issue of the Journal of Psychosocial Oncology that, to none of our surprise, concludes:
Physical activity improves quality of life in men with PC and recreationalphysical activity interventions may be attractive supportive care options for PC survivors with both physical and psychosocial benefits. Joining a sportfocused care group may increase social support and elicit positive psychological growth and future interventions may benefit from integrating the unique characteristics of dragon boating into peer support programs formale cancer survivors.
You can read the full Dragon Boat PCa study 2020 by clcking on the live link. Kudos to both Richards on their Dragon Boat Paddling!
Me on the other hand ….. am very happy in my single scull – the exercise without the social part!
Editor’s Pick – it ain’t over til the Fat Lady sings, so wait until the very end to hear us uncover a rarely used form of ADT that been around since 2006 and is given annually.
Please note that changes made by both GoToMeeting and YouTube make the transcript unavailable this week. We are investigating if we can resolve.
Viewing our videos; testosterone spikes after recurrent shot – but is this an error?; coronavirus precautions; spot radiation experience; TP53 mutation; is it worth treating the primary with metastatic disease; coordinating local and quarterback doctors; MPCP; starting hormone therapy; Eligard vs Lupron; Vantas – a 12-month LHRH pellet
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.
Editor’s choice: Learn first hand about certain side effects from the immunotherapy drug, nivolumab (Opdivo).
Pharmokinetics of Lupron – explained a little; side effects of immunotherapy anti-PD1 drug Opdivo; treating liver metastasis; getting palliative doc involved; durolutamide results; starting ADT froom scratch; monitoring G5+5 PCa after you come off LHRH; what to know when starting chemo; neuropathy and maybe how to prevent it from chemo
Chat Log
Russ Smith (to Everyone): 7:20 PM: Turns out I was given a script today for Casodex.
Ken Anderson (to Everyone): 7:22 PM: Russ
Ken Anderson (to Everyone): 7:22 PM: good to know!
Our lead Sarcoidosis Virtual Group moderator, Frank Rivera, is nationally recognized in both the sarcoidosis and rare disease communites. Frank is an amazing and inspirational individual who has just self published his story, ‘Walking in Silent Pain’ on Amazon. To read more about the book, please click here.
And if you are on Amazon, and have not already signed up for Amazon Smile, please do so and nominate Answer Cancer Foundation. For every dollar you spend on Amazon or Amazon Prime, they donate a half-cent to us at no expense to you. It mounts up, so please particpate.
Editor’s Pick – ATM and TP53 mutations may increase risk of radiation damage.
Treatment after 2nd line anti-androgen fails; CARD trial & Jevtana/cabazitaxel; finding a trial close to home; is chemo best early or late?; somatic mutations can change; osteopenia – what to do; ADT driven anemia; ATM & TP53 mutations may increase risk for radiation damage; dealing with pain before and after cancer Dx
There are several upcoming presentations that may interest particpants in several of our groups – we have highlighted them, including those for our NEW Blood Cancer group that will launch in April:
Our regular paritcpants in the High Risk/Recurrent/Advanced Prostate Cancer Virtual Group will know we have two particpants who swear by Dragon Boat Racing ….. Richard Foody who paddles for the MSKCC team.trained by guru Donna Wilson, as you can see.
Me on the other hand ….. am very happy in my single scull – the exercise without the social part!