Black Men and Active Surveillance. Not Black And White But a Viable Option.
A Black physician-scientist-AS patient shares his views
Editor’s note: Wayne Greaves has been a regular attendee of the AnCan Virtual Support Group for Active Surveillance in 2020. He is quiet but projects an aura of dignity and knowledge. When Wayne speaks, I listen.
We have talked privately about how many Black men are steered away from active surveillance (AS). Some prostate cancer patients in the Black community say AS is “not for us.” They consider AS an “experiment,” like the U.S. Public Health Service disaster in Tuskegee, where proven treatment for syphilis was withheld from Black men. This “experiment” left a legacy of distrust of researchers and medicine in he Black community.
(Here’s some background I wrote on Black men, prostate cancer and AS: https://www.medpagetoday.com/hematologyoncology/prostatecancer/91283
Wayne has written an excellent article on Black men and AS—with footnotes and all. I wasn’t surprised that Wayne was keeping a secret from us. Turns out he’s not only a patient on AS, but he’s also a physician-scientist.
(Wayne Greaves)
By Wayne Greaves, MD
Is active surveillance (AS) a good option for Black men with prostate cancer? This is a frequent question among Black men, eliciting mixed opinions and much debate. There is the glib answer of “yes” offered by some well-meaning physicians; more thoughtful answers by other physicians who respond, “ yes, but with caveats”; and a resounding “no” from a few who oppose AS for Black men.
So, what should a Black man with prostate cancer do?
My comments are limited to Black men with clinically localized, very low-risk, low-risk, or intermediate-risk cancer (Gleason Grade 1 and Grade 2).
By active surveillance, I mean close follow-up by a healthcare provider at regular intervals with a prostate-specific antigen (PSA test), at least every six months; ideally, an MRI of the prostate every one to two years; periodic prostate biopsies (no more than once a year) and perhaps genomic testing of prostatic biopsy tissue. Active surveillance unlike “watchful waiting” requires discipline and commitment by the patient to a schedule of medical follow-up visits, and it helps to have a supportive urologist or other physician specialists.
In my case, (Gleason Grade 1) active surveillance was the option my urologist recommended and the option I chose but it makes my close friend, another urologist, very uncomfortable because of the risk of disease upstaging and progression in Black men with prostate cancer.
So, why the differing opinions and biases regarding active surveillance for Black men with prostate cancer?
Considerable historical data show that Black men tend to have higher rates of prostate cancer, often a more aggressive form of cancer, and a higher mortality rate compared to white men with prostate cancer (1,2). The reasons for this are complex but include social determinants of health, systemic inequities in our health care system, and ostensibly, germline genetic factors and biologic differences in tumor genomic profiles (3).
Another reason often cited for the reticence in recommending AS is the lack of robust data to guide recommendations for this population. Black men have been underrepresented in clinical trials of PSA screening and in studies of active surveillance. Current recommendations, therefore, are based on data from mostly white patient populations (4).
Cultural bias is another factor that impacts the choice of active surveillance. Many urologists and Black patients consider surgery (radical prostatectomy) a time-trusted and definitive procedure that avoids the uncertainty and anxiety associated with active surveillance. Some urologists reportedly either never discuss active surveillance or downplay this option with their Black patients. Fortunately, this situation seems to be improving.
There are several good reasons to consider AS and I am a strong advocate for AS in black men with prostate cancer.
Patients with low-risk and favorable intermediate-risk cancer are able to defer or delay the toxic effects of surgery or radiation, such as erectile dysfunction, urinary incontinence, and bowel problems, without compromising cancer outcomes. While some data suggest AS may not be as durable for Black men (5), there are individual reports of men continuing AS for a decade or more without disease progression.
Another benefit of AS is that it affords time for the development of new and improved diagnostic tests and therapeutic procedures that would otherwise not be available if definitive therapy were performed earlier. Perhaps of paramount importance, AS allows one to delay treatment but preserve fertility and quality of life with the option for treatment and cure when AS is ended.
Here is the approach I took in deciding on AS, 3.5 years ago. I adhered to the criteria in the following algorithm: PSA no more than 10, PSA density less than 0.15, prostate biopsy: Gleason Grade 1 with no more than three cores positive; Confirmatory prostate biopsy; MRI PIRADS score less than 3; Genomics (Oncotype Dx test) no more than 20; and genetics (germline) test: negative for BRCA-2 and ATM mutations. These are stricter criteria than most algorithms propose but reflect my commitment to AS while being realistic about the risk of disease progression in Black men.
I also insist on PSA testing every three months rather than every six months as my urologist prefers. I am prepared to pursue definitive therapy if my PSA increases markedly or a biopsy, MRI or clinical exam suggest disease progression.
In the meantime, I exercise regularly, follow a vegan lifestyle and enjoy my quality of life without the worry of incontinence, erectile dysfunction, or gastrointestinal complaints.
I also regularly attend an online support group (AnCan) which has been welcoming and supportive. The leaders have been outstanding and the group has been a source of solidarity, useful tips and a platform for sharing experiences and learning from others.
Unfortunately, few Black men attend, and I urge any Black man reading this article to join a support group. The benefits can be tremendous.
Some have asked what is it like being a physician-scientist and navigating my journey. Certainly, being a physician-scientist has been helpful in understanding the medical aspects of the disease, but not much help in real-world situations.
For example, when it comes to making appointments or attending office visits, I am just another name and number, often having to endure long waiting times and lame excuses.
I have switched urologists once and likely soon will again and I have had one very unpleasant exchange with the Chief of Urology at a leading medical center when I raised challenging questions.
Finally and sadly, I have experienced bigotry and racism similar to that faced by other Black men. But I press on, embracing those who want to make the world a better place for everyone.
References
1. Chowdhury-Paulino IM, Ericsson C, Vince Jr. R, et al. Racial disparities in prostate cancer among Black men: epidemiology and outcomes. Prostate Cancer Prostatic Dis 25, 397-402 (2022). https://doi.org/10.1038/s41391-021-00451-z `
2. Deka R, Courtney PT, Parsons JK, et al. Association Between African American Race and Clinical Outcomes in Men Treated for Low-Risk Prostate Cancer With Active Surveillance. JAMA. 2020;324(17):1747–1754. doi:10.1001/jama.2020.17020
3. Mahal BA, Gerke T, Awasthi S, et al. Prostate cancer racial disparities: a systematic review by the Prostate Cancer Foundation panel. Eur Urol Oncol. 2022;5(1):18-29. doi:10.1016/j.euo.2021.07.006
4. National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: prostate cancer version 4.2022. Accessed August 29, 2022. https://www.nccn.org/professionals/physician_gls/pdf/prostate.pdf
5. Hari T. Vigneswaran, Luke Mittelstaedt, Alessio Crippa, Martin Eklund, Adriana Vidal, Stephen J. Freedland, Michael R. Abern. (2022) Progression on active surveillance for prostate cancer in Black men: a systematic review and meta-analysis. Prostate Cancer and Prostatic Diseases 25:2, 165-173
Wayne Greaves, MD, 72, is an infectious disease physician-scientist who lives in New Jersey. He is a strong advocate for health equity and health literacy in ethnic minority communities. He also is a passionate and accomplished photographer and enjoys cycling with friends on weekends.
He had his initial (transrectal) biopsy Jan 2019. Three of the 12 cores were positive for Gleason 6 (5,5,10%).
“I did not do a confirmatory biopsy at one year. I was too traumatized by the first biopsy experience,” Greaves told me.
Genomic tests results: Oncotype Dx GPS 14 (very low risk). Genetic test negative for BRCA 2, ATM and other relevant mutations He has no known family history of prostate cancer or other cancers
Greaves had his last biopsy in January 2022. “It was transperineal with one core positive [G3/3] 5%; not enough to do genomics,” he said.
(One of Wayne’s photos from Guatemalan Highlands.)
Looking for something to do?
Join an event for September’s Prostate Cancer Awareness Month
Active Surveillance 101 course launches at ASPI meeting
ASPI will be premiering the first of a new video series named "Active Surveillance 101" at noon Eastern on September 24, 2022.
Like 101-level courses in colleges, AS 101 is aimed at teaching the basics. In this case, it's the basics of active surveillance, close monitoring of low- to favorable intermediate-risk prostate cancer.
The program features conversations between actual patients and their partners/spouses and leading experts. The goal of this series is to reach all AS candidates, including those who have not yet been diagnosed with prostate cancer but have rising PSAs (prostate-specific antigen) blood levels and offer them an introduction to AS and help them formulate questions when they go to their family doctors, urologists, or oncologists.
Register here: ASPI SEPTEMBER ZOOM MEETING
The first episode features a couple , Nancy and Larry White in a simulated office visit with Dr. Steve Spann, a top family physician and dean of the University of Houston College of Medicine. They discuss Larry's rising PSA and what it may mean.
In subsequent episodes, the couple visits Dr. Laurence Klotz, of the University of Toronto, the "father of active surveillance." Other episodes of AS 101 are being developed on biopsies, imaging, and DNA testing.
AS 101 is sponsored by the Active Surveillance Coalition, which includes Active Surveillance Patients International, the AnCan Virtual Support Group for Active Surveillance, Prostate Cancer Support Canada, Prostate Cancer Research Institute, and TheActiveSurveillor.com newsletter. We encourage you to share this series with anyone who you know who is dealing with this issue, including your family physician.
September is Prostate Cancer Awareness Month. So lots is happening.
Don’t miss the Prostate Cancer Research Institute’s annual free meeting Sept. 10-11, 2022.
Don’t miss Drs. Marks—Scholz and Moyad presenting the latest news and views on prostate cancer. Dr. Laurence Klotz, of the University of Toronto, the father of active surveillance, is among the speakers.
Sign up here: https://pcri.org/2022-conference#2022-invitation
Active Surveillance 101 course launches at ASPI meeting
ASPI will be premiering the first of a new video series named "Active Surveillance 101" at noon Eastern on September 24, 2022.
Like 101-level courses in colleges, AS 101 is aimed at teaching the basics. In this case, it's the basics of active surveillance, close monitoring of low- to favorable intermediate-risk prostate cancer.
Register here: ASPI SEPTEMBER ZOOM MEETING
The program features conversations between actual patients and their partners/spouses and leading experts. The goal of this series is to reach all AS candidates, including those who have not yet been diagnosed with prostate cancer but have rising PSAs (prostate-specific antigen) blood levels and offer them an introduction to AS and help them formulate questions when they go to their family doctors, urologists, or oncologists.
The first episode features a couple, Nancy and Larry White, in a simulated office visit with Dr. Steve Spann, a top family physician and dean of the University of Houston College of Medicine. They discuss Larry's rising PSA and what it may mean.
In subsequent episodes, the couple visits Dr. Laurence Klotz, of the University of Toronto, the "father of active surveillance." Other episodes of AS 101 are being developed on biopsies, imaging, and DNA testing. Dr. Jonathan Epstein, the guru of Gleason scores from Johns Hopkins, has agreed to meet with Larry and Nancy, too.
AS 101 is sponsored by the Active Surveillance Coalition, which includes Active Surveillance Patients International, the AnCan Virtual Support Group for Active Surveillance, Prostate Cancer Support Canada, Prostate Cancer Research Institute, and TheActiveSurveillor.com newsletter. We encourage you to share this series with anyone you know who is dealing with this issue, including your family physician.
Prostate Cancer Support Canada meets virtually. Yanks are welcome.
The Prostate Cancer Support Canada is holding its 2022 Prostate Cancer Virtual Conference September 17-18 in honor of Awareness Month.
Day 1, The ‘New Normal’ for Support Groups, will focus on facilitation and communication skills for those in, or interested in, leadership roles in the prostate cancer support community.
Day 2, Prostate Cancer Realities will more broadly address issues of interest to our community including managing anxiety and stress throughout the cancer journey, genetics and prostate cancer, upcoming research, how to find trusted information about prostate cancer, and more.
Dr. Brian Goldman, best-selling author and host of White Coat, Black Art on CBC radio, will be speaking about The ‘New Normal’ for Support Groups.
Check for details in the conference program ‘flipbook’ with session + speaker details and registration link: https://bit.ly/2022PCVCprogram
Prostate Cancer Foundation is looking at physical and mental illness.
For Prostate Cancer Awareness Month, the Prostate Cancer Foundation, the 800-pound private prostate cancer researcher, is holding a webinar on “Physical and Mental Wellness in Prostate Cancer.”
Here are the details:
Join us for the first in a series of monthly webinars hosted by PCF President and CEO Dr. Charles J. Ryan.
During Prostate Cancer Awareness Month, PCF challenges everyone to Get Healthy. Dr. Ryan and guests will discuss key aspects of nutrition, exercise, and mental health in prostate cancer.
The event will be Sept. 20, 2022 04:30 PM in Pacific Time (US and Canada).
Sign up to join here.
Following each segment, there will be a live Q&A.
• Prostate 8: Simple lifestyle changes that work (Dr. Stacey Kenfield, UCSF)
Dr. Kenfield is Associate Professor in the Department of Urology and is the Helen Diller Family Professor of Population Science for Urologic Cancer. She is an expert on lifestyle, exercise, nutrition, and their impact on prostate cancer. She'll discuss research showing how specific lifestyle factors improve outcomes after prostate cancer diagnosis, and practical ways to incorporate these changes into your life.
• Mental Health and Prostate Cancer (Dr. Andrew Roth, Memorial Sloan Kettering Cancer Center)
Dr. Roth is an Attending Psychiatrist and is board-certified in Psychiatry, Geriatric Psychiatry, and Psychosomatic Medicine. He is focused on caring for the mental health needs of patients with prostate cancer and other genitourinary diseases. He'll provide an overview of the challenges patients commonly face, as well as strategies and resources for coping and living well during treatment and survivorship.
Here’s hoping Dr. Roth will cover AS as well as advanced prostate cancer.
Please send any questions for the speakers in advance to: webinar@pcf.org
View the ASPI session on genetics
Men and their families can learn valuable facts from a cancer genetic test. While the use of genetics testing for cancers is still growing, the existing state of the art for prostate and related cancers is a powerful tool for identifying men and persons at risk. This 60-minute expert presentation features Robert Finch, MS, a certified genetic counselor, of Myriad Genetics, and medical oncologist Michael Glode, MD. The video is available at https://aspatients.org/meeting/
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BLACK OR WHITE - There are several very good reasons why ALL men should be skeptical about the "science" of prostate cancer detection and treatment.
> the PSA is neither specific for prostate cancer or for the prostate itself and associated with a false positive rate of 78%.
> urologists own studies have shown that PSA testing FAILS to save significant numbers of lives - see the PLCO study referenced in my articles on this site.
> the grossly unscientific and risky ultrasound-guided needle biopsy (whether trans-rectal or trans-perineal ) samples blindly and randomly about 0.1% of the prostate - meaning that we are clueless about what's going on in the 99.9% rest of the prostate. Surveillance biopsies therefore, are a shameful recommendation.
> the Gleason grading and scoring system is complex and troubled by significant amounts of errors of interpretation amongst pathologists. What do you really have?
> the Gleason grade 3 as in the 3+3=6 "cancer" lacks the hallmarks of a cancer on both clinical and molecular biology grounds. Those in the prostate cancer industry have known this fact for some years but continue to work hard to keep this fraudulent cancer label for the grade 3 in place. There is an urgent need to correct this immoral misrepresentation so that we stop freaking out our patients.
> radical prostate cancer surgery FAILS to save significant numbers of lives - see urologists own PIVOT study cited in my articles on this site.
> most if not all treatment studies - whether whole gland or focal - cannot be trusted as they are invariably corrupted by mixes of various Gleason grades and scores, incorrect diagnoses, various tumor volumes and arbitrary treatment of participants with testosterone suppression.
> there is no urgency as the 10 year survival whether treated or not is similar.
"Insanity is doing the same thing over and over and expecting different results" - Einstein
Anyone stepping into the treacherous prostate cancer arena should read the 2 books exposing its rotten underbelly - before getting injured;
The Great Prostate Hoax - Ablin and Piana
The Rise and Fall of the Prostate Cancer Scam - Anthony Horan MD
Very clearly then, there is very good reason for all men - black or white - to be very skeptical of much that is recommended in the prostate cancer arena.