Living with cancer often means living with uncertainty, and for many patients, that uncertainty shows up as fear of recurrence and the very real stress of upcoming scans, tests, and follow-up appointments. In his introduction for the most recent Men Speaking Freely on June 4th, Dr. John provides a great summary of the Fear of Cancer Recurrence:
I thought I’d take a new look at a favorite topic of ours, Fear of Recurrence. Here is an update from recent literature.
Not that we need a definition, but FCR is defined in the literature as the fear, worry, or concern that cancer will return or progress. It’s among the most common and persistent concerns for cancer survivors, including men with prostate cancer. It seriously affects our quality of life, mental health, and even relationships.
Recent studies confirm that at least half of cancer survivors experience moderate to high FCR, with 10–20% experiencing severe, disabling FCR. Younger age, female gender, recent diagnosis, low social support, poor physical condition, and previous psychological difficulties are risk factors for higher FCR in general. For prostate cancer, younger patients and those with PSA increases or ambiguous test results are at higher risk. Of course, men may underreport FCR due to stigma or stoicism (fancy word for being stupid).
Cognitive Behavioral Therapy (CBT) and Mindfulness-Based Interventions are still the most evidence-based approaches. New trials support the efficacy of both in reducing FCR, including when delivered via telehealth.
Structured interventions like ConquerFear (iConquerFear) and SWORD (Survivors’ Worry Reduction) are scientifically validated in multiple countries and are worth looking at. There’s supposed to be an Australian intervention called iCanADAPT for prostate cancer, but I can’t seem to navigate to it from icandapt.adaptcancer.org.au. Meta-analyses show modest benefit for these interventions, with high patient acceptability.
Medications addressing fear of recurrence are still not supported as primary treatment, but they sure got me by those early months without adverse effects.
The International Psycho-Oncology Society and ASCO survivorship guidelines, as well as recent research, recommend regular assessment and referral for FCR. Tools like the Fear of Cancer Recurrence Inventory (FCRI), FCR-7, and Cancer Worry Scale are available, but I’ve never heard of anyone being screened. Wake up, docs.
On the horizon, studies are examining genetics, inflammation, and personality traits as predictors of FCR. Interventions are becoming culture-specific.
So, FCR is normal, and severe/persistent FCR is treatable. Routine discussion and screening for FCR should be part of survivorship care. Effective interventions (CBT, mindfulness, research-based web-based programs) are available and increasingly accessible. Patients should not hesitate to raise FCR concerns – help is available.
-Dr. John Antonucci MD
With thanks to one of our own, Andy Douglas, a recent webinar from Smilow Cancer Hospital at Yale, part of its Survivorship Series, goes into far more detail and is worth watching. In Unraveling Fear of Cancer Recurrence: Realities and Tools for Coping (https://www.youtube.com/watch?v=27aHVlFsgN4), presenters Gabriel Cartagena, PhD, Angela Khairallah, MSW, LCSW, and Susanne Lee-Baldassini, LCSW, examine fear of cancer recurrence and “scanxiety,” explaining how common these experiences are and offering practical coping strategies for managing them.
Not everyone will experience fear of cancer recurrence or scan-related anxiety in the same way, but these concerns are common across the cancer community. This webinar will not make uncertainty disappear, but it does offer grounded, practical tools that can help patients and families navigate it with more confidence. If you’re struggling with anxiety, read the recent Substack post by Howard Hertz: Anxiety and the Miscalibrated Mind. Hertz breaks down how our brains are evolutionarily hard-wired to prioritize survival over factual accuracy, meaning your brain would rather make the mistake of feeling anxious than risk being caught off guard.
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Don’t blame it on the prostate cancer… two Gents report tenderness but is it something else?
Topics Discussed
Newbie prescribed singlet HT when doublet was SoC – don’t switch w.3 months left but change docs; is cystoscopy the right procedure?; IHT after 3 years – but what bout shortness of breath; is tenderness from exercise or cancer?; is HT the right first step on BCR; insurance declines Axumin; starting AMG509 xaluritamig trial; stable on mono daro at 86; just finished 6th Pluvicto for foamy cell PrCa; don’t fret over tiny PSA moves; is chest tenderness down to HT or a previous cancer?; not eligible for Capitello trial – needs 2nd opinion on intensification
Chat
AnCan – Ric sent: 3:04 PM
GoTo Help 877 582 7011
Danny sent: 3:13 PM
Have to duck out for a couple of minutes.
David D Seattle sent: 3:14 PM
David joined by phone, I have an update
Len sent: 3:31 PM
Yes, my brother in arms, I was at the beach today. Water temp was 73. Re: your email – did you complete your chest RT?
Hello Steve! Yes, I’ll need to step up my sunblock to spf 50. UV index is high every day. How’s by you?
Adrian (Tony) Bruno sent: 3:51 PM
ask him what his hemoglobin level is
Steve Roux, Up North, Michigan sent: 4:00 PM
I got to run gang. So good to see you all. Great meeting as usual!
Joseph (Sean) Siry – Laguna Woods, CA. sent: 4:04 PM
Dinner is on the table, so I will have to go also– & I can report next time the good news.
AnCan – Rick sent: 4:06 PM
For everyone – Please tell us if you think you need to leave early…(should have added, “and you asked for time’:rd)
Bob Y — Los Angeles sent: 4:13 PM
I also need to leave early. Happy to see all of you.
Jim E., Ft. Worth T sent: 4:17 PM
While I haven’t had “Germline” testing, I had a complimentary gene testing through a group called Color, and they indicated no concerns for increased risk. I have logged in and opened my biopsy and PSMA PET results.
Bruce Schrimpf sent: 4:27 PM
I may have b e to leave there is a tornado warning for areas just to the South of my home. BDS
Reel Recovery is an international non-profit organization that conducts free fly-fishing retreats for men living with all forms of cancer. Their retreats offer the peace of the outdoors and the healing power of fly-fishing, while providing a safe, supportive environment for participants to connect with others sharing similar cancer journeys.
The organization provides all meals, lodging, and fly-fishing equipment at no cost, and no previous fishing experience is required. To maintain an intimate and supportive atmosphere, a maximum of 12 men are invited to participate in each retreat.
Two of our own, AnCan’rs Bill and Herb, had the opportunity to participate in the retreat.
The organization’s mission is built on the idea that nature has a profound power to heal. Their retreats aren’t just about fishing; they are about providing a safe space for men to share their stories. Since its founding in 2003, Reel Recovery has served thousands of men across the United States and abroad. If you or a man you know is living with any form of cancer, at any stage of treatment or recovery, consider looking into their upcoming retreat schedule.
To learn more, apply for a retreat, or donate to support their mission, visit ReelRecovery.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Telix, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Dr. Kwon… either overtreating or undertreating! And… Crestor & Nubeqa don’t mix!
Topics Discussed
Repeat recurrences since 2019 may be down to shorter periods of HT; Gent pushes for Axumin and gets it; should he debulk?; add back E2; is Kwon overtreating with triplet? – get thee to a GU med onc; stable but needs a new GU med onc – or does he?; HT is doing exactly what it should; doing well on mono daro but needs help with back pain; rosuvastatin doesn’t play well with daro; numbers good after stopping HT but fatigue/weakness persists; RT requires self catheterizing; fatigue/weakness could be recent covid; experience with PCPEP
Chat
Alfredo in Wimberley sent: 5:24 PM
UW-OncoPlex™ is a multiplexed mutation assay for tumor tissue that assesses mutations >400 genes related to cancer treatment, prognosis, or diagnosis (listed below). UW-OncoPlex™ is intended for solid tumors.
Sorry Fellas, I need to leave early. I will pose my question next week. Thanks!
“Thomas” M Vancouver,WA sent: 6:45 PM
Pregabalin (Lyrica)
Jim Marshall, Vet Support Grp. Moderator sent: 6:48 PM
Might want to look at PRAVASTATIN as an alternative. I could not handle Crestor or Lipitor. Jim Marshall
Bruce Schrimpf sent: 6:52 PM
The worst thing about a colonoscopy is the prep not the procedure itself. During the procedure you’re in La-la Land!
Jeff Marchi – San Francisco sent: 6:53 PM
exactly
Bruce Schrimpf sent: 6:54 PM
Indeed!
Jeff Marchi – San Francisco sent: 6:55 PM
👍
david opp sent: 6:56 PM
I am going to call it a night, I will try for next Tuesday.
Peter M sent: 7:05 PM
Great meeting! Good night!
“Thomas” M Vancouver,WA sent: 7:07 PM
Excuse me, gents. Leaving the meeting. Thanks to all.
Pierre D., Olean NY sent: 7:14 PM
I joined PC-PEP a week ago and find it helpful.
Bruce Schrimpf sent: 7:15 PM
I had COVID during the time I was on Lupron. I was retired so I took noon time naps. I believe in the less medication the better! It makes me feel better and improves my bank account!
Joseph (Sean) Siry – Laguna Woods, CA. sent: 7:17 PM
Have a healthy week
Bruce Schrimpf sent: 7:18 PM
Always good seeing and hearing all of you. Good night (Guten Nacht Auf Deutsch). BDS
