By Howard Wolinsky
Mileage may vary, as they say. So does Active Surveillance.
My version of AS isn’t the same as yours.
Take the case of the two octogenarians: Howard Furer and Allan Greenberg.
Furer, a retired marketing executive, who will turn 83 in August, has been on AS for 14 years.
He had Gleason score 3+3 in one core 12 cores taken with tumor size less than 0.5 millimeters, less than 5% of the length of the core biopsy. He’s only had two biopsies. He had a negative biopsy six years earlier.
“My PSA had been in the normal range until it jumped to 6.6 in February 2008, prompting me to get a biopsy. My urologist prescribed dutasteride, and a PSA test every six months. My PSA has been in the normal range ever since,” he said.
I’ve had two multi-parametric MRIs in my almost 12 years on AS. I was among the first prostate cancer patients to undergo an MRI to check their prostates.
When I started, they did a biopsy first and then an MRI--ass backward from what is done today. Today, MRI is used to find potential lesions that then can be biopsied.
Furer said he has never had an MRI in his version of AS because he had metal hip replacements--though these days it is possible to have an MRI with artificial hips.
He gets a PSA every six months. (I have a version of the PSA, known as the Prostate Health Index, once a year.)
As you can see, there are no universal protocols for AS.
Furer is sticking with AS. “I am still on AS and always will be!” he said, even as he heads in the direction of his 90s.
Allan Greenberg, who turns 82 later this month, a retired college professor in the Boston area, is pondering whether he wants to stay on AS and maintain the rituals of regular testing.
He was diagnosed at age 69 and went on AS after consulting with a urologist, a radiation oncologist, and then a medical oncologist at Dana Farber Cancer Institute.
I think it was a smart way to go to get opinions from multiple specialists.
(I only consulted with two urologists, who disagreed on how to manage my case. I went with the one who called me the “poster boy for AS.”)
Greenberg has PSA tests twice a year.
He’s had only two biopsies.
(I've had six, following a protocol from Johns Hopkins of annual biopsies, but I have not had one in six years.
(How often do you rotate your tires? Probably more often than I do.)
Greenberg said, “The urologist wanted me to have another [biopsy], but at my hesitancy, he agreed that if I did twice a year PSA's that would suffice. At the same time, he did want me to have the MRI last year.”
Like me, and unlike the other Howard, Greenberg has had two MRIs and is planning another soon.
“I had an MRI as part of an experimental project about eight years ago, and then not again until last year. I am scheduled for another later this summer after they found some lesions and noted that I was a PI-RADS 4. After speaking with my urologist, and with the medical oncologist with him I had first met shortly after the original diagnosis, the decision was made to see where we were after the coming MR,” he said.
Furer plans to stick with AS. Greenberg isn’t so sure. In the mainbar, I describe how
(I am in a hybrid version of AS, backing away from MRIs and biopsies unless my PSA rises significantly.)
Greenberg said, “No matter what they find [in the next MRI], I am rather unsure that I will commit to any kind of treatment. My priority is quality of life with my wife and my son and daughter-in-law, and I don't anticipate living more than another 10 years, and so expect to outlive my PC,” he said.
What is your AS “protocol”? Why not share it with us in the comments or write your own article.
Join ASPI at 12p.m. Eastern July 30 for Dr. William Li’s webinar, “Eat to Beat Prostate Disease.”
Free Registration: www.aspatients.org or go direct to: https://bit.ly/3t5lFLx
Free prostate-healthy recipes for all registrants.
More info: info@aspatients.org; or DrDavidKingKeller@gmail.com
Join Dr. Channing Paller, associate professor of Oncology and Urology at Johns Hopkins University, Sidney Kimmel Comprehensive Cancer Center, and Rob Finch, Director of Urology Medical Affairs at Myriad Genetics as they discuss the impact of genetic factors in prostate cancer and the PROMISE study.
Genetics, the PROMISE Study, and Prostate Cancer: a Town Hall Webinar
July 20, 6:00 p.m. - 7:00 p.m. Eastern Time
Join a ZERO webinar, Prostate Cancer and the Unique Needs of the LGBTQIA+ Community featuring Anne Katz PhD, RN, FAAN, of CancerCare Manitoba, Winnipeg. It will July 27, 2022 at 06:30 PM Eastern.
Register here:
https://us06web.zoom.us/webinar/register/WN_eUvLX0yNSAmRe5b-ST7zeg.
Thanks for you service and kind words, Joe.
I should remind you I am not an MD though I do know a lot of them.
Sounds like you have high-volume Gleason 6.
Some docs would send you for treatment. Not all would.
So AS is not necessarily no longer a consideration.
You need all the info you can get.
Have you had a second opinion of your slides? Who did the first read? Hopkins-Epstein?
Get a second or third opinion.
Have you had DNA or genomic testing.
What about multi-parametric MRI?
What results do you have?
Each one of these are factors to help you figure out the puzzle.
You are fairly young so some docs would consider that a concern.
Your PSA sound OK--unless you had a steep climn. Some docs don't worry until you hit 15.
Your lungs were hurt in a transrectal biopsy?
Consider staying awake with a transperineal biopsy.
Consider going to the AnCan.org support group for AS on Wednesdays at 8 pm. Eastern.
Remain calm.
My AS story.......first my details;
61 yrs old
PSA tracking-2013-2.5.....currently 4.75
MRI-03-2022 found two areas that had lesions, one was PRIRADS #4 other was PRIRADS # 5
Biopsy 04-2022...12 cores taken.....7 were Gleason 3+3 =6........3 each were found in each lesion and 1 other.
NOW......my urologist suggested Proton Therapy. The Proton Therapy suggested AS. DaVinci surgeon suggested surgery. (of course). Another urologist suggested surgery . All that is left is an upcoming appointment with a SBRT Doctor at John Hopkins.
I think the most good indirect information I have received is reading "The Active Surveillor"..Thank you.
This is just a "sidebar", I also have some lung concerns, minor at this time, but could become serious. Something I was told by my Pulmonologist (after several CT's) that some of the damage to my lungs "could have" been caused by a general anesthesia when I had my biopsy. Saying that, he suggested that I "limit" getting a general anesthesia......biopsy, surgery etc.
Saying all that, surgery for by prostate isn't a consideration now. (Actually, never was) That adds to helping me to go the AS route, but still talking to anybody who can help educate me. (Knowledge is power)
So I will get my MRI and do my PSA as needed and go from there, and when and if the time come I will have to make another choose!!!
Thank you Howard for all the information you provide, it has really helped me along with many others am sure!! My hats off to you!!
JFrevele
Retired USMC