Happy Anniversary to Me: Reflection on a Decade on Active Surveillance September 30, 2020 This is a year of anniversaries for me.This year marks my 50th anniversary as a journalist, most of those years spent as a medical writer. This is also my tenth anniversary since I was diagnosed with prostate cancer.Like the airlines say, you have many choices when it comes to flying. Same thing with my dealing with the sliver of Gleason 3+3 tumor found on a biopsy: I had plenty of options.I could have opted for radiation of various flavors or radical prostatectomy, which posed risks for incontinence and impotence. A community urologist urged me to undergo a radical prostatectomy within a week’s time because he had an opening in the OR. He didn’t support active surveillance, which I had heard of as a medical writer for the Chicago Sun-Times.I decided to get a second opinion from Dr. Scott Eggener at the University of Chicago, where doctors are on salary and don’t have to drum up surgeries. He said I was the “poster child” for active surveillance. Research showed that in a decade’s time I would be pretty much the same as I was then–a man with a slow-growing, non-threatening tumor. He was right.Ten years ago, active surveillance mainly was the road not taken. Only 6% of candidates accepted surveillance with routine PSAs, digital rectal exams, biopsies, and mpMRIs.The majority wanted an instant “cure,” hang the potential problems afterward.A lot has changed in the past decade. First off, they’ve stopped calling early-stage prostate cancers Gleason 3+3=6; now they are classified as Grade Group 1. Dr. Laurence Klotz, an active surveillance pioneer from the University of Toronto, told the Prostate Cancer Research Institute conference that this was done because doctors didn’t want patients to think they were “60% of the way to the grave.”There now is genomic and genetic testing to determine how aggressive a prostate cancer is and help determine a course of action. Micro-ultrasound is showing promise as a tool comparable to mpMRI in diagnosing PCa at a fraction of the cost. There is focal therapy to remove a portion of the prostate gland rather than totally removing it. Immunotherapy and vaccines are under study that offer the potential for dramatic changes in the years ahead for men with low- and also intermediate-risk prostate cancer. Among the more dramatic changes in 10 years is that now 50% of American men who are candidates opt for active surveillance — in some urology practices, it’s up to 80% of men. Surgeons are trained now to resist the instinct to rush in with the scalpel.Another change is the creation and blossoming of support groups aimed at men on active surveillance over the past three years. When I started on this path, there were support groups that mixed men with low-risk on to advanced prostate cancer.I played a role in changing this. I followed the example of my friend Thrainn Thorvaldsson, an Icelandic businessman, who started the first support group for men on active surveillance anywhere in the world. We joined forces after he read some of my blogs in MedPageToday.com in which I advocated for active surveillance patients. Thrainn, Gene Slattery and Mark Lichty formed Active Surveillance Patients International, the first American advocacy group of its kind.Earlier this year, I became a moderator for support groups offered for men on active surveillance by AnCan. In that role, my fellow moderators and advocates Lichty, Joe Gallo, Elliott Kerman, Ken Mason and I with support from AnCan founder Rick Davis organized a series of webinars aimed at men on active surveillance, “Active Surveillance & Beyond.” We drew other sponsors, including ZERO Prostate Cancer, Us Too International, ASPI, and more. Our first webinar, thanks to help from ZERO, has drawn over 1,200. [Note: ASPI recently left to start its own support groups.]Our second webinar will be held at 7 p.m. ET Sept. 29. Dr. Brian Helfand, a genomics expert from the University of Chicago and NorthShore University HealthSystem, will be speaking on how genetics and genomics guide decision making in active surveillance for prostate cancer patients.We expect another capacity crowd; you can register for the upcoming webinar here. BTW, I have another anniversary on Sept. 29: my 73rd birthday. Stop by and wish me happy birthday. I’ll give a special present to the first to do so in the chat at the webinar.Written by Howard Wolinsky. Howard Wolinsky is a Chicago-based freelance medical writer. He worked as a medical and science reporter for the Chicago Sun-Times, which nominated him twice for the Pulitzer Prize. He writes the “A Patient’s Journey” blog for MedPageToday.com. He recently won the Peter Lisagor Award, Chicago’s top journalism award, for a series of articles on gadolinium contrast for Chicago Medicine Magazine published by the Chicago Medical Society. Blog Posts Living with Prostate Cancer More for you
This is a year of anniversaries for me.This year marks my 50th anniversary as a journalist, most of those years spent as a medical writer. This is also my tenth anniversary since I was diagnosed with prostate cancer.Like the airlines say, you have many choices when it comes to flying. Same thing with my dealing with the sliver of Gleason 3+3 tumor found on a biopsy: I had plenty of options.I could have opted for radiation of various flavors or radical prostatectomy, which posed risks for incontinence and impotence. A community urologist urged me to undergo a radical prostatectomy within a week’s time because he had an opening in the OR. He didn’t support active surveillance, which I had heard of as a medical writer for the Chicago Sun-Times.I decided to get a second opinion from Dr. Scott Eggener at the University of Chicago, where doctors are on salary and don’t have to drum up surgeries. He said I was the “poster child” for active surveillance. Research showed that in a decade’s time I would be pretty much the same as I was then–a man with a slow-growing, non-threatening tumor. He was right.Ten years ago, active surveillance mainly was the road not taken. Only 6% of candidates accepted surveillance with routine PSAs, digital rectal exams, biopsies, and mpMRIs.The majority wanted an instant “cure,” hang the potential problems afterward.A lot has changed in the past decade. First off, they’ve stopped calling early-stage prostate cancers Gleason 3+3=6; now they are classified as Grade Group 1. Dr. Laurence Klotz, an active surveillance pioneer from the University of Toronto, told the Prostate Cancer Research Institute conference that this was done because doctors didn’t want patients to think they were “60% of the way to the grave.”There now is genomic and genetic testing to determine how aggressive a prostate cancer is and help determine a course of action. Micro-ultrasound is showing promise as a tool comparable to mpMRI in diagnosing PCa at a fraction of the cost. There is focal therapy to remove a portion of the prostate gland rather than totally removing it. Immunotherapy and vaccines are under study that offer the potential for dramatic changes in the years ahead for men with low- and also intermediate-risk prostate cancer. Among the more dramatic changes in 10 years is that now 50% of American men who are candidates opt for active surveillance — in some urology practices, it’s up to 80% of men. Surgeons are trained now to resist the instinct to rush in with the scalpel.Another change is the creation and blossoming of support groups aimed at men on active surveillance over the past three years. When I started on this path, there were support groups that mixed men with low-risk on to advanced prostate cancer.I played a role in changing this. I followed the example of my friend Thrainn Thorvaldsson, an Icelandic businessman, who started the first support group for men on active surveillance anywhere in the world. We joined forces after he read some of my blogs in MedPageToday.com in which I advocated for active surveillance patients. Thrainn, Gene Slattery and Mark Lichty formed Active Surveillance Patients International, the first American advocacy group of its kind.Earlier this year, I became a moderator for support groups offered for men on active surveillance by AnCan. In that role, my fellow moderators and advocates Lichty, Joe Gallo, Elliott Kerman, Ken Mason and I with support from AnCan founder Rick Davis organized a series of webinars aimed at men on active surveillance, “Active Surveillance & Beyond.” We drew other sponsors, including ZERO Prostate Cancer, Us Too International, ASPI, and more. Our first webinar, thanks to help from ZERO, has drawn over 1,200. [Note: ASPI recently left to start its own support groups.]Our second webinar will be held at 7 p.m. ET Sept. 29. Dr. Brian Helfand, a genomics expert from the University of Chicago and NorthShore University HealthSystem, will be speaking on how genetics and genomics guide decision making in active surveillance for prostate cancer patients.We expect another capacity crowd; you can register for the upcoming webinar here. BTW, I have another anniversary on Sept. 29: my 73rd birthday. Stop by and wish me happy birthday. I’ll give a special present to the first to do so in the chat at the webinar.Written by Howard Wolinsky. Howard Wolinsky is a Chicago-based freelance medical writer. He worked as a medical and science reporter for the Chicago Sun-Times, which nominated him twice for the Pulitzer Prize. He writes the “A Patient’s Journey” blog for MedPageToday.com. He recently won the Peter Lisagor Award, Chicago’s top journalism award, for a series of articles on gadolinium contrast for Chicago Medicine Magazine published by the Chicago Medical Society.
