Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.
New friends got made across international borders and they didn’t even have a condition in common!! . Mark Horn (on right) lives with metastatic bladder cancer for which AnCan does not as yet have a group. I have been supporting him personally and we keep in touch. Mark usually resides in Princeton, NJ but was on a trip to Panama to visit with his fiancee, Kalina, who lives in Brazil.
We had just seen Wang Gao Shan (on left) in our high risk/recurent/advanced prostate cancer group on Monday night, and I guessed he was in Panama too – since he could not be inTaiwan because of the time differnce and I did not think he was in Portland, OR. Gao Shan resides in one of those three sposts.
So I suggested that Mark and Kalina email Gao Shan as I didn’t have his phone number. Sure enough, there was an immediate response and last nifght, as you all see, they met for dinner in Panama City. Now I had never seen Gao Shan so I was as surprised as Mark. The story behind Wang Gao Shan’s Chinese name is for him to tell – I can just tell you that it means King of High Mountains … and that I am truly happy they got together!
And to boot, it turns out that both lived on a long street in London that runs through my teenage stomping grounds but they weren’t neighbors – that would have been too much!
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 28, 2021
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
…. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
…. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat .
Editor’s Pick:On a serious note, the discussion around how much HT with salvage radiation. On a fun note, Rusty’s experiecne at Reel Recovery and Jerry D’s fish take the bait! (rd)
Topics Discussed
Community cancer center provides sub-optimal advanced care; what’s the right duration for hormone therapy with salvage radiation; BAT and Xofigo whilst waiting for Lu177; switching docs … and will IHT be next?; wack-a-mole spot RT vs systemic treatment; Double J stents anyone? (let us know at info@ancan.org); visiting the military golf course; fun cancer retreats
Chat Log
Alan Moskowitz (to Everyone): 3:11 PM: This is the radiology lab that does Pylarify scans. https://www.woodburnmed.com/our-services. James Marshall, their coordinator said they have worked out the requirements and details to obtain Medicare coverage, and for major secondary insurers. They have done 70 Pylarify scans so far and consider themselves as leading edge. they are in Virginia, near the Washington DC area. They were the first to do Axumin scans in the DC area.
Herb Geller (to Everyone): 3:13 PM: I looked at their web site and they seem to be well prepared
Joe Gallo (to Organizer(s) Only): 3:26 PM: If Gary is a Vet he can still get the PSMA PET Pyl at no cost at the LA VA (UCLA)
Herb Geller (to Everyone): 3:29 PM: Gary could easily get to National Airport and then to the center in Annadale for a scan
Pat Martin (to Everyone): 3:34 PM: When I went off 2*5; I went cold turkey. Did not seem to cause any problems. Sometimes I just ignore side effects
AnCan – rick (to Everyone): 3:35 PM: Pat – you are very lucky. I had a friend who lost 30 lbs or more and lost his appetite for months.
Bruce Bocian (to Everyone): 3:40 PM: I got my G68 at U of M
Jake Hannam (to Everyone): 3:43 PM: Next meeting is Monday at 8:00 PM EST
Pat Martin (to Everyone): 3:46 PM: Dr. Lin is my Uro/Onc. I have the utmost regard for him.
Ben Nathanson (to Everyone): 3:50 PM: Assessing the Role and Optimal Duration of Hormonal Treatment in Association with Salvage Radiation Therapy After Radical Prostatectomy: Results from a Multi-Institutional Study https://www.europeanurology.com/article/S0302-2838(19)30112-5/fulltext (AnCan has full text – info@ancan.org)
Herb Geller (to Organizer(s) Only): 3:55 PM: Thanks, Ben. Very nice study.
David Muslin (to Everyone): 3:55 PM: Mark, I know how hard it is to be on ADT however, it’s great insurance not to have a recurrence.
Joe Gallo (to Organizer(s) Only): 3:56 PM: Off to the 50 Vets call. Goodnite.
Pat Martin (to Everyone): 3:59 PM: I have a similiar Dx with a Gl-9(5+4) in 2014, radiation. Was on ADT for 30 months. A vacation then PSA started rising. Now I’m back on ADT. Have Keytruda as a back up.
Herb Geller (to Organizer(s) Only): 4:00 PM: I’m on denosumab and bone density actually went up in a year.
AnCan – rick (to Everyone): 4:13 PM: Schweitzer is good, younger GU med onc. He knows AnCan – has done a seminar.
Pat Martin (to Everyone): 4:16 PM: I’ve mentioned AnCan to him a lot of the times I’ve seen him…4x a year for the last 7 years.
AnCan – rick (to Everyone): 4:23 PM: Gents …… we featured an article on agonist vs antagonist LHRH and their CVD impact back in 9/14/21 Reminder
John Ivory (to Everyone): 4:49 PM: I was asked to be an Orgovyx ambassador, but they wanted me to give access to my medical records for the agency that runs it; I decided to pull out. Didn’t want non-clinicians in my medical records
Here’s our latest proposal for AnCan supporters to raise a few bucks on our behalf ……. follow Brit Paul Taylor’s lead and raise money for us with a US Version Rude Names fundraiser . And to heck with a moped … we have a few bigger bikes in this Group.
A very interesting but challenging and thought provoking article came to AnCan’s attention last week published by ASCO’s Journal of Clincial Oncology. The AnCan prostate cancer moderators thought carefully about whether we should reblog it Ultimately we decided it was worthwile for all our prostate cancer community, and maybe others too.
Please let us know your thoughts via info@ancan.org – we will add them to this page. Your editor has already taken the liberty of including some moderator responses:
Just one editorial comment on A Dozen Eggs, especially with men in mind using estrogen patches. AnCan is not aware of any clinical evidence that increased levels of estrogen promote prostate cancer progression.
…. it is an excellent and thought provoking article. If presented in the right context and sensitivity it could be quite instructive and inspirational.
It is really a great piece.
I think it’s fine, although I’m a little concerned about the oncologist telling Evelyn that estrogen might make her prostate cancer worse. I’m not aware of evidence supporting that concern
Quite interesting and not something I even thought about. I’d say the majority of our “customers” are squarely in the heterosexual male category but I wouldn’t doubt that many of them may know someone similar to Evelyn. I have a work association with a transgender woman that I’ve known for 15+ years, well before the transition. I know from past conversations that she has not had reassignment surgery. It might be something she faces in the future. Now you have me wondering if they take the prostate out for reassignment surgery.
I have attended workshops discussing transgender issues in the medical world. The system mistreats and misunderstands transgender patients. Medical staffs humiliate them and ask for their birth names and to show their driver’s licenses.
If these patients undergo transformative surgery, they retain their prostates. So ironically, as much as they wish to change their identities, they need to undergo digital rectal exams and PSAs as part of routine care.
Change is coming slowly to accept these people in medicine and in the larger society.
On July 22nd, we had so much fun once again with our very own Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group) lead our appropriately titled…”Art With Hannah Garrison“! It has a Saturday Night Live ring to it, don’t you think? She was requested to teach something relaxing and summer-y, and did she deliver!
We created an absolutely beautiful dusk beach setting, that is begging for a pineapple drink with a little umbrella in your hand. Last time we had an event to celebrate MS Awareness Month, but this time all were welcome. We saw members from our Blood Cancers, Prostate Cancer, Thyroid Cancer, MS Group, and more!
I promise this is SO easy and relaxing, so grab some supplies and have an hour of creative relaxation.
Supplies:
Acrylic paint or watercolor paint. (It will be watered down, so it doesn’t matter!) Colors – blue or aqua / dark blue / orange/ pink / purple. (colored pencils were also successfully used in this art project!)
Paint brush – round or flat.
Black crayon, but any dark color will be ok!
Water
Napkins
If you have any suggestions, or would like your art featured in the AnCan Art Gallery, please email me at alexa (at) ancan.org!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
Richard Maye lives with Gleason 3+4 prostate cancer and participates in AnCan’s Active Surveillance and Low/Intermediate Video Chat Groups. In communications with AnCan, Richard had thoughts on how he responds to QoL issues surrounding his diagnosis, that we encouraged him to blog. (rd)
AnCan Participant Richard Maye Muses on Quality of Life
I have Prostate Cancer! Now what do I do? After receiving my diagnosis in November 2018, a month prior to turning age 71, I knew that it was imperative for me to come to terms with not only understanding this disease, but what did this mean for how I had previously viewed living out my life.
While I had talked about Quality of Life, the ideas that I included in that term were vague and general. Terms such as: Travel (where, when?); Continue to Work at least part time (doing what? for how long?); Help other People in need (Who, Where, How?); …. you get the point. I also used the term when I looked back at my Father’s end days. My Father had lung cancer and advanced metastatic prostate cancer. His end days were not filled what we would call a Quality of Life. Twenty years ago, the treatment option for his prostate cancer was chemo therapy, an option that he made clear would not be considered. I respected him all of my life including in this life decision, and watched how he lived his days with determination and without complaint.
Now, this is different, this is me. The diagnosis, while generally favorable, caused a sense of urgency for me to decide how I would live my days. Given my long-term PSA history I had researched prostate cancer, some of the treatments, side effects and related issues. I started with the question – did I believe the diagnosis? To answer this important starting point, I had a Genomic Test and also a second opinion. From there I spoke with the Urologist, Medical Oncologist, Radiation Oncologist, and two family practitioners. Research led me to the Prostate Cancer Foundation, to AnCan, UsToo and other invaluable resources. It was very important to include my wife in every step of this process. As a man of faith, I knew I had to put this in God’s hands and trust Him for guidance.
So here I was with all of this information and consultation, but it still came down to how am I going to live with this? During my administrative career as a senior administrator in healthcare to make important decisions I used this analytical process: Identify the problem; Make it a priority; Evaluate its scope; Assess the potential impact; Develop a solution; Make the decision; and, Implement it. That process is the hinge upon which the gate of my success rested.
Using that approach forced me to decide what would become my operational parameters for the term Quality of Life going forward. It ended when I told my wife and physicians that I was going to respect this cancer BUT not fear it. This means that I was not going to rush into treatment, I would go on Active Surveillance, modify my living standards but not live in fear. Here is a small example of an area included in my Quality of Life Guide. Nutrition and Diet are important to all of us no matter our health status and it plays a big role in the prevention and fighting cancer. If I want to have a piece of my grandchildren’s birthday cake, have a cocktail with our son, share a bottle of wine with my wife, I will do so and not stay awake at night wondering if I just promoted my cancer to grow. Yes, I have reduced the intake of sugar, alcohol, red meat and consumed an ocean of decaffeinated green tea, eat more vegetables than ever in my life, vigorously exercise every day and laugh.
The risk and side effects of the various treatments that are available today along with the potential for the cancer to return were weighed heavily in my decision process. Understanding the risk and consequences, I decided to wait, but wait watchfully in Active Surveilance. With regular monitoring of my PSA, I have postponed having another biopsy and glad that I did, given the trend toward using the Transperineal procedure. New diagnosis and treatments are being announced frequently.
Understandably there are men in different stages of their cancer than I, but the point is this. Define what Quality of Life means to you. Look at your life as it is currently, your life expectancy, family, career and then determine what will be your ROL (Return on Life) for the remainder of your days.
According the Social Security actuarial tables, my life expectancy is another 12 years. That’s about 4,400 days. For now, I can go about the business of living instead of being plagued by anxiety, depression and roller coaster emotions.
Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.
