Here are some thoughts from our own Howard Wolinsky. He is a Chicago-based medical writer and author. His new book is “Contain and Eliminate: The American Medical Association’s Conspiracy to Destroy Chiropractic.” For more information, go to Containandeliminate.com. He also contributes a blog, “A Patient’s Journey,” to MedPageToday.com. He has been on active surveillance for 10 years.
Active surveillance for men with low-risk cancers has been the Rodney Dangerfield of urology. We men on AS — close monitoring of our cancers — get little to no respect from men being treated for prostate cancer who can experience a host of serious side effects.
AS has experienced gains over the past five years. The American Urological Association in 2017 stated in new guidelines that clinicians should recommend active surveillance as “the best available care option for very low-risk localized prostate cancer patients. (Strong Recommendation; Evidence Level: Grade A).”
This is a far cry from when I was diagnosed in December 2010, and my first urologist told me he could cure my cancer — a tiny Gleason 6 in a single core — “next Tuesday” when he had an opening in his OR. Back then, 6–10% of men like me opted for AS. Or, to put it another way, 90–94% sought “definitive” treatments, mostly radical prostatectomies.
A new generation of urologists, following the guidelines, is increasingly resisting the urge to perform surgery and rather recommends that men with low-risk Gleason scores of 3+3 and some men with favorable intermediate-risk Gleason scores of 3+4 go on AS.
There has been a surge in the past five years in the proportion of American men opting for AS. Some experts estimate that as many as 50–60% of eligible men now choose AS. (Again, 40–50% still opt for prostatectomies or radiation, a contrast from 90% who opt for AS in Sweden and the Netherlands.)
In May 2017, I described in my MedPageToday blog the lack of support services for men on AS. The philosophy then was to combine men on the full range of diagnoses, from very low-risk to advanced cancers, and treatments.
However, the voices of men worried about their next biopsy or MRI could be drowned out by those of men with impotence or incontinence as collateral damage from radical surgery, to those with hot flashes from hormone therapy, or “brain fog” from chemotherapy.
Men with low-risk cancer attend these meetings and often don’t return.
Some think these side effects are their future. But they’re not. About 50% of men on AS eventually end up being treated, though frequently they switch to treatments because of anxiety rather than the disease progressing.
Some men experience anxious surveillance; they may have low-risk disease but they can’t co-exist any longer with a cancer that can be cut out or zapped with radiation or lasers.
I encountered outright hostility when I suggested in my blog four years ago that separate support groups be created for men on AS.
One group, known as the “warriors,” argued all men with prostate cancer are in this together in what they like to call the “reluctant brotherhood.” But these. men with aggressive treatments and diseases may not realize men with low-risk disease are being scared off and want to stay away from the brotherhood altogether.
It still isn’t widely acknowledged that there is a cultural divide between these groups of men with very different diseases and side effects, different views of their diseases, and different emotional needs.
Some of the support and advocacy organizations have been trying to meet this need for men on AS. Groups, including AnCan/Us Too, Active Surveillance Patients International, Cancer ABCs, Malecare, Inspire (a virtual group from Us TOO International), Prostate Cancer Research Institute, and ZERO — The End of Prostate Cancer have been making some strides with virtual, asynchronous and (until COVID-19) in-person support groups.
About a year and a half ago, I helped start a monthly virtual support group for AnCan and UsToo believed to be the first of its kind in the U.S. The group has grown to a weekly meeting. We hold webinars featuring leading experts on AS that draw hundreds of men virtually and hundreds more on video replay,
At last, AS seemed to be finding its place in the support sun. Then, I encountered negative attitudes on the part of people who ought to know better — support group leaders.
One impatient leader in effect asked me when men on AS would just grow up, “bite the bullet,” put on their big boy pants and stop whining about biopsies that could save their lives. But the man who said this had undergone hormonal treatment and didn’t quite understand that men on AS are not “whiners” or “crybabies” but rather are coping with their own problems.
I told him there is a cultural gap between men who were being treated and low-risk men like me. Men with more higher-grade cancers who are being treated may be fighting for their lives while those on AS are worrying about more fundamental issues such as “When should I have a confirmatory biopsy” or “Is gadolinium contrast dangerous?” that are just as real to them.
I was frustrated about another incident recently that demonstrates how little respect AS may be getting from some men with higher Gleason scores and collateral damage from treatment.
As an Us Too group leader, I got a note from HQ seeking group leaders willing to talk in pop-up support groups about such topics as surgery, radiation, hormone therapy, and helping the newly diagnosed and caregivers. Us Too made the request on behalf of ZERO, which wanted to include sessions at its annual Summit this year.
I read the list over. ZERO, a savvy organization I have worked with, omitted active surveillance as a topic. I pointed this out and ZERO graciously added a support “lounge” devoted to AS. An oversight, sure, but no slight intended. Three of us AS support group moderators volunteered to participate.
I was stunned at what happened at the session. We had about 25 attendees. Apparently, most had been treated or were considering treatment for more advanced cancers. We did what we could to help and refer the men to support groups more suited to them.
We suspected there were some men on AS lurking but not talking.
One very vocal group leader represented a prostate cancer support group for all-comers. He said he had undergone a radical prostatectomy decades ago. He said he knew about AS but admitted he wasn’t much of a fan.
I gather he thought that aggressive therapy was inevitable so why not get it over with. He insisted his group did what it could to support men on AS.
But he said he found these men to be scared rabbits (my term). I can understand why. They were attending a support group geared toward men coping with severe side effects and those fighting for their lives run by a leader who didn’t really believe in AS as an option.
Good intentions gone awry.
I suspect there is a lot of this going on in the support world. I wonder how many men with low-risk or favorable intermediate-risk prostate cancer attend these groups and are steered into undergoing prostatectomies or radiation therapy when none is needed — at least not immediately.
I contrast these AS skeptics with my friend Bob Allan, a support group leader from Prostate Cancer Support Canada/Burlington in suburban Toronto. Allan was treated with radiation years ago and has fared well. But he supports AS as an option and regularly attends our AnCan/UsToo virtual meetings to learn about the latest on AS to share with his members.
It’s time to end this undeclared culture war. I think many support group leaders need to be educated about AS especially since the proportion of men with prostate cancer opting for AS is on the rise. Or these support group leaders need to refer AS patients to support groups with expertise in active surveillance.
Men on AS will be better served by taking these approaches than suffering in silence in their groups.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021
Editor’s PickShould docs make overall survival predictions – it scares a newly diagnosed man, while an old hand laughs! (rd)
Topics Discussed
High-risk PCa treatment decision; recurrence – beware of overall survival preductions; durable remission and NED; experiencing spinal collapse; Spot Radiation; scanning for recurrence; ARV110 trial experience; can you add a drug to your trial; lymphedema issues; CBC questions; picking up rib lesions; 5 yrs out when the doc didn’t give you 5; record your medical meetings; estrogen patch for hot flashes; more chemo …. & more & more; gabapentin for neuropathy; PBRT vs IMRT; going off ADT to get a scan result; …. & lots of nutrition discussed in the Chat Log!
Chat Log
Jeremy (to Everyone): 5:21 PM: https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer
Ken (to Everyone): 5:24 PM: hey jake…. chemo #15 this past friday so dealing with the side effects. alk phos continued down 10 points and psa down 2
Ted Healy (to Everyone): 5:46 PM: record your meetings
Jake Hannam (to Everyone): 5:47 PM: Yes we do, Ted (this and several others)
Ted Healy (to Everyone): 5:48 PM: no, meetings with the dr
John I (to Everyone): 5:52 PM: Wow, Sylvester, that was inspirational!!!
Len Sierra (to Everyone): 5:53 PM: I agree with John – we need to hear more from Sylvester on these calls!
Jake Hannam (to Everyone): 6:26 PM: Radium 223 negates future use of lutetium?
Jake Hannam (to Everyone): 6:27 PM: Is that true?
Herb Geller (to Everyone): 6:36 PM: I don’t know Ra-223 negates anything but it doesn’t seem that promising compared to other therapies.
Rick Davis (to Everyone): 6:38 PM: radionuclide trials usually prevent particpation if you have already taken a radionuclide. check the Lu177 trials
Carl Forman (to Everyone): 6:52 PM: Thanks so much to Scott Hogan for being able to participate here tonight. Hope to see you here again. Best wishes.
Ted Healy (to Everyone): 7:06 PM: I’m sorry, have to go. thank you all!
Vanita Gaglani (to Everyone): 7:10 PM: walnuts, greens,soaked fenugreek seeds ( 1 tsp per day) real licorice roots, sunflower seeds, spearmint tea all help with hot flashes. Len Fenugreek seeds can be bought in any Indian grocery store.If you have an Indian grocery store near you they have the greens called Methi. Some of the anti carcinogenic ,anti inflammatory natural products include Turmeric, cummin seeds, cinnamon.
eric (to Everyone): 7:16 PM: is this for anti inflammatory
Carlos Huerta (to Everyone): 7:19 PM: Alpha Lipoic Acid
Vanita Gaglani (to Everyone): 7:19 PM: yes. But get real turmeric powder , not capsules.1/4 tsp each you can put all in mik and drink or in tea, warm water. I am happy to answer any questions. hello@vanitasrehab.com. These are natural anti inflammatories.
Rick Davis (to Everyone): 7:22 PM: IMRT vs PBRT side effects http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/
Carlos Huerta (to Everyone): 7:23 PM: Get a PSMA PET to target the protons
Vanita Gaglani (to Everyone): 7:24 PM: For all treatments try to keep the bladder filled 8-10 oz of urine.
Rick Davis (to Everyone): 7:24 PM: Not necessarily true Vanita – as we heard earlier
Vanita Gaglani (to Everyone): 7:24 PM: we do not need 32 oz of fluid because most men cannot hold it.or women.
John I (to Everyone): 7:26 PM: I needed a full bladder, but I believe it was 24 ounces (though I’m small)
Vanita Gaglani (to Everyone): 7:28 PM: 24 oz is difficult to hold
John I (to Everyone): 7:29 PM: They timed it–drank it 20 min before treatment & tretament was quick.It was hard to hold only if the machine went down & I had to wait a few extra minutes
Vanita Gaglani (to Everyone): 7:30 PM: if anyone can tolerate plain yoghurt eating that helps a lot too Agreed John.
Bruce Bocian (to Everyone): 7:39 PM: please type those letters of that stanford test in the chat box, not sure I heard it correct
Rick Davis (to Everyone): 7:40 PM: 17F DCFPyl
Peter Kafka (to Everyone): 7:40 PM: 17F DCF-PYL PSMA PET CT
John I (to Everyone): 7:42 PM: Great session, thanks Rick
On March 3rd, we had the esteemed Dr. Darryl Leong (Cardiologist and Director of the McMaster University and Hamilton Health Sciences Cardio-Oncology Program) at our Active Surveillance Virtual Support Group.
Dr. Leong, explained to men on active surveillance that his work on men on AS makes sense because many of these men are at greater risk of dying from cardiovascular diseases—such as heart attacks and strokes—than they are to die from prostate cancer. He said there is strong evidence for the benefits of exercise to reduce CVD risk. He said the research on a diet is not as strong because there are few randomized studies. However, there is recent research from MD Anderson that the Mediterranean diet may have some benefits for men on AS. Long warned that many cardiologists are now questioning the long-accepted practice of taking one baby aspirin a day. He also answered questions about cardiovascular disease issues in men with advanced prostate cancer who are taking hormonal therapy.
We want to thank Dr. Leong for answering so many questions!
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Mar 2, 2021
Editor’s Pick: We rarely discuss anesthesia – but we did tonight. Along with estrogen treatment! (rd)
Topics Discussed
Recurrence with multiple spots; signet cells; artifical urinary sphincter; anesthetic choices; estrogen therapy; elecrostimulation for incontinence; i-131 PSMA radionuclide trial; abscopal effec from spot RT; regulating your own LHRH; relugolix; Flomas and shortness of breath; metformin & statins
Chat Log
Jake Hannam (to Everyone): 6:35 PM: Genomic Loss of Heterozygosity (LOH) or genomic instability is often related to defective homologous recombination repair mechanisms.
Herb Geller (to Everyone): 6:38 PM: I did find that BRCA mutations can lead to LOH.
AnCan – rick (to Organizer(s) Only): 6:41 PM: aggressive Tx
Mark Perloe (to Everyone): 6:44 PM: But loss of heterozygosity is of uncertain significant unless it relates to BRCA2
Herb Geller (to Everyone): 6:45 PM: That’s true – BRCA can lead to LOH, but LOH without BRCA is not informative/
Mark Perloe (to Everyone): 6:45 PM: I did trelstar and abiraterone. It was rough at first, but with exercise it was quite tolerable. Darolutamide does not cross the blood brain barrier, so how one feels is less disrupted. I agree that over agressive treatment may lead to earlier progression to CR status or neuroendocrine disorder. Deferring immune approach without BRCA2 seems to be outside the standard of care. Is Darolutamide covered to the same extent as other receptor blockers?
Herb Geller (to Everyone): 6:49 PM: Darolutamide may have a more favorable profile of actions.
Carlos (to Everyone): 6:56 PM: signet cells
Carl Forman (to Everyone): 6:58 PM: Is anyone on Relugolix (Orgovyx) as a replacement for, or instead of, Luporn/Eligard? It is a pill instead of an injection, and lower risk of cardiovascular events.
Herb Geller (to Everyone): 6:59 PM: It is a histologic variant of adenocarcinoma that responds very similarly to hormone therapy.
John Ivory (to Everyone): 6:59 PM: I’ve been on Relugolix for just a week instead of Lupron.
Peter Kafka (to Everyone): 7:01 PM: I am not sure Relugolix is covered by insurance yet. At least that is what I have heard. Perhaps it is too new.
John Ivory (to Everyone): 7:02 PM: I’m on Medicaid (not Medicare) in Illinois. Was surprised I was covered. Expected not to be. Maybe since it avoids the need for a nurse for the injection?
Mark Perloe (to Everyone): 7:08 PM: Propofol is great. It is just not an at home disease. We loved it for egg retrievals. You won’t remember going to sleep. They tell you it might burn, and the next thing you are ready to get dressed.
Carlos (to Everyone): 7:10 PM: No one complains about Prpopfol or Versed either.
Herb Geller (to Everyone): 7:13 PM: For me, I always taught that you taste almonds and then go to sleep.
Jon McPhee (to Everyone): 7:13 PM: What is the stuff they are discussing?
AnCan – rick (to Everyone): 7:14 PM: estradiol
Carlos (to Everyone): 7:14 PM: Estrogen
Jimmy Greenfield (to Everyone): 7:17 PM: Wassersug said exactly this
Carlos (to Everyone): 7:20 PM: Yes Wasserburg is the source.
ALFRED LATIMER (Private): 7:20 PM: Dr E was very dismissive of my use of estrodiol. Said it was “old school”.
Jimmy Greenfield (to Everyone): 7:22 PM: everyone should know Wassersug is cool, very kind and approachable you can easily get his info he answers email
Carlos (to Everyone): 7:23 PM: Does anyone know a doctor that works with estrogen? I would like to explore that further. Are you using a patch?
AnCan – rick (to Everyone): 7:35 PM: Salivary Glands https://www.prostatecancer.news/2021/01/avoiding-radiation-damage-to-salivary.html
Carlos (to Everyone): 7:40 PM: UCLA and SFO are using gallium-68. Gallium-68 is for the PSMA PET scan. Oligometastatic is 5 or less metastatic lesions.
Herb Geller (to Everyone): 7:46 PM: The definition of oligometastatic is not so precise. Others use 3 and some would go further than 5.
Carlos (to Everyone): 7:50 PM: You are correct. Five is the cut off for getting focal radiology treatment.
Mark Perloe (to Everyone): 7:52 PM: Or you treat primary and the oligo mets respond. Dr. Kishan did not believe it exists in prostate
Mark Finn (to Everyone): 8:12 PM: folks – got to go. Thanks for an informative session.
Frank Fabish (to Everyone): 8:13 PM: I am checking off. See you next week. I have my 4th Chemo next Thursday.
Jon McPhee (to Everyone): 8:18 PM: On Flomax I noticed incidences of low blood pressure when exercising or hiking in hills. Have gone to Flowmax every second day and that helps
Mark Perloe (to Everyone): 8:18 PM: Take CO Q10 on statin
Herb Geller (to Everyone): 8:18 PM: I think I’ll try that – I am peeing fine, so I might ot need it at all.
Skip Maniscalco (to Everyone): 8:18 PM: What is too much Metformin?
Mark Perloe (to Everyone): 8:19 PM: I take 1000 mg bid\
Skip Maniscalco (to Everyone): 8:19 PM: Any difficulty? That is what I take
Did you know? It’s Multiple Sclerosis Awareness Month! We love our Team MS here at AnCan, and we love the MS community. I have such a soft spot for Dan and Jen Digmann. I’ve learned moderating tips that I use in my groups, and had the utmost pleasure of working with them to produce The TALK – MS. We loved this piece (Embracing Inclusion in Multiple Sclerosis Research) from Jen from their blog A Couple Takes on MS so much that we just had to share. We are in 100% favor of supporting inclusion everywhere in health, and love how Jen explains the importance. Thank you so much, Dan and Jen!
No one likes to be left out. Feeling excluded is the worst. It leaves you feeling such doubt. Wondering why was I ignored or overlooked? More often than not, it’s not you, it’s them. Seriously! They’re the problem, not you.
Speaking of problems, I will do pretty much whatever it takes to figure out my life’s biggest problem: Multiple Sclerosis. I imagine most other people living with this chronic disease of the central nervous system feel the same way. MS is a horrible disease, and I want to fundraise, educate people and be included as part of the reason this mystery is one day solved and we find a way to stop MS.
Thankfully, we are getting closer. Over the past two decades, researchers have made significant progress in understanding MS and even have developed numerous new treatments to slow its progression.
But, remember my earlier comment about how bad it feels to be left out? Imagine being a person of color and learning that you weren’t represented in the clinical research that led to the treatment’s approval.
That’s how it can feel for minorities who historically have been underrepresented in MS research.
MS affects everyone who is living with it differently (just look at Dan and me). The age of onset, how fast the disease progresses, and the severity of symptoms vary widely from person to person.
This is why it is so important that Genentech initiated the first-ever clinical trial that focuses exclusively on broadening our current understanding of MS disease biology among people who identify as Black or of African descent and Hispanic/Latinos living with MS. The Phase IV CHIMES study, or CHaracterization of ocrelizumab In Minorities with multiplE Sclerosis, currently is enrolling participants across the United States.
Genentech reports that minority communities living with MS, including people who identify as Black or of African descent and Hispanic/Latinos, experience more severe symptoms and a faster progression of the disease than their Caucasian counterparts. People who identify as Black or of African descent also have twice the risk of MS compared to Caucasians, while people who identify as Hispanic/Latinos have half the risk.
Such underrepresentation leads to limited data on the progression of MS, the effectiveness of treatment, and its genetic underpinnings. It also excludes people living with this condition from an opportunity to receive treatments that have the potential to make a difference.
Dan and I were thrilled to see that this effort includes the perspective of two powerful voices in the MS community: Dr. Mitzi Joi Williams, a neurologist at Joi Life Wellness MS Center, and our friend Damian Washington, an MS patient leader and vlogger we recently chatted with for our 7 Questions with A Couple feature.
Hear what they have to say about this important work:
For information on our peer-led video chat MULTIPLE SCLEROSIS VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.