Living with the Fear of Recurrence

Living with the Fear of Recurrence

Living with the Fear of Recurrence

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.

-Dan Gifford

Watch Here: 

 

Reel Recovery: Fly-fishing Retreat for Men with Cancer

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.

Hi-Risk/Recurrent/Advanced PrCa Video Chat, 4/6/26

Hi-Risk/Recurrent/Advanced PrCa Video Chat, 4/6/26

Hi-Risk/Recurrent/Advanced PrCa Video Chat, 4/6/26

Rick D presents AnCan at Houston Methodist https://ancan.org/ancan-keynote-at-houston-methodist-aug-2024-can-you-hear-us-amplifying-the-patient-voice/

Listen to our recent Estradiol discussion https://ancan.org/learn-from-ancans-emperors-of-estradiol-021626/

Recent article on AnCan in Rarity life. https://ancan.org/rarity-life-magazine-featuring-rick-davis/

Hear Founder, rick davis talk about how AnCan came to be in this 20-min podcast dropped this week on Empowered Patient Radio http://empoweredpatientradio.com/virtual-support-groups-remove-barriers-encourage-sharing-honest-experiences-to-fight-misinformation-with-rick-davis-ancan

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.

  • AnCan – Rick sent: 5:40 PM

  • Alfredo in Wimberley sent: 5:52 PM

    i have to leave in 30 mins

  • David D Seattle sent: 6:02 PM

    Acupuncture is working fairly well for me in reducing hot flashes and sleep disruption

  • Steve L sent: 6:03 PM

    I have pursued low dose estradiol add back but is was not approved by my Doc

  • AnCan – Rick sent: 6:21 PM

    Russell Szmulewitz U of Chicago https://www.uchicagomedicine.org/find-a-physician/physician/russell-szmulewitz

    Alan Bryce https://www.cityofhope.org/alan-bryce

  • Julian-Houston sent: 6:35 PM

    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

AnCan Keynote at Houston Methodist, Aug 2024 – Can you hear us? Amplifying the patient voice.

AnCan Keynote at Houston Methodist, Aug 2024 – Can you hear us? Amplifying the patient voice.

AnCan Keynote at Houston Methodist, Aug 2024 – Can you hear us? Amplifying the patient voice.

Can You Hear Us??       How AnCan helps patients make their voice heard – amplifying the patient voice!
Rick Davis gives keynote address at Houston Methodist Neal Cancer Center 12th Annual Cancer Symposium. August 2024.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, 4/6/26

Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 9, 2025

Hi-Risk/Recurrent/Advanced PrCa Video Chat, Dec 9, 2025

AnCan thanks the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, 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: Lotsa confusion throughout this week! To pick just one, Signatera MRD test.

Topics Discussed

Newbie has a great HCP team – but seeking more; Mayo bamboozles this Newbie – needs more and reliable information; another Newbie chose to leave himself on ADT for 5 years – and wonders about fatigue and weight gain he’s now shed w. GLP; muscle mass with low T; Regular finds Signatera MRD test – but it’s not yet FDA approved for prostate cancer… & Dr. Jack’s been following this test a long time; Epstein downgrades Gent from 4+5 to 4+3 – Kishan & MR Linac next; elevated liver enzymes after chemo; steady as he goes with 0.03 rise; what’s pituitary’s role for testosterone; PSA testing during Pluvicto

Chat
  • Alexander Lalov, Pendleton, IN

    sent: 4:13 PM

    Is the recording going to be made public?

  • Eric James; Tyler TX

    sent: 4:13 PM

    yes, on Youtube

  • AnCan – rick

    sent: 4:14 PM

    All our Recordings are posted on YuTube – over 700

  • Larry (Veteran, Alaskan)

    sent: 4:16 PM

    Check your camera shutter at the top of your screen

  • AnCan – rick

    sent: 4:19 PM

    877 582 7011 GoTo

  • Jeff Marchi – San Francisco

    sent: 4:28 PM

    free genetic testing PROMISE PCa Germline Project

  • AnCan – rick

    sent: 4:31 PM

    Tx Jeff – Doug has germline already

  • Jeff Marchi – San Francisco

    sent: 4:32 PM

    ok i hear you

  • Alexander Lalov, Pendleton, IN

    sent: 4:34 PM

    As far as I know PROMISE do Hereditary Cancer Test Only.

  • AnCan – rick

    sent: 4:35 PM

    Yes Promise is only germline

  • AnCan – rick

    sent: 4:35 PM

    Gents – I have poor bandwidth today . There’s an interent issue here.

  • AnCan – rick

    sent: 4:47 PM

  • Jim Marshall, Veteran, Alexandria, VA

    sent: 4:59 PM

    When you ask for the Promise test, do not specify any doctor. It is between you and Promise. Jim

  • Jay in MN

    sent: 5:10 PM

    👍

  • AnCan – rick

    sent: 5:15 PM

    Dr. Jonathan Epstein – https://advanceduropathology.com/ Tel: 516-760-2037 jepstein@imppllc.com

  • AnCan – rick

    sent: 5:16 PM

    Dr. Ming Zhou Mount Sinai Health System Department of Pathology, Box 1194 Annenberg Bldg. 15th FL 1468 Madison Ave New York, NY 10029 Email: Ming.zhou@mountsinai.org Telephone: (212)241-8881

    Jay – those are the 2 pathologists for a 2nd opinion.

  • Alexander Lalov, Pendleton, IN

    sent: 5:27 PM

    Bary, would you post the web address, please

  • Alexander Lalov, Pendleton, IN

    sent: 5:28 PM

    Oh, Withing is the name. Thnx!

  • John G.

    sent: 5:28 PM

    https://www.youtube.com/watch?v=Ado6dItMebE Yes, even on androgen deprivation therapy (ADT) with testosterone suppressed to near-zero (castration levels), you can increase muscle mass and strength through resistance training, though gains are typically modest and focused on counteracting atrophy rather than dramatic hypertrophy.[1][3] ## Evidence from Studies Multiple clinical trials show prostate cancer patients on ADT gaining muscle mass and fiber size after 12–20 weeks of supervised resistance training, including compound lifts like squats and presses, performed 2–3 times weekly. Progressive overload—gradually increasing weights—prevents fiber size decline in both type I and II muscles and boosts capillarization for better performance. These adaptations occur via mechanical loading and protein synthesis pathways independent of testosterone, such as IGF-1 signaling.

  • Larry (Veteran, Alaskan)

    sent: 5:28 PM

    YMCA “Livestrong” program is designed for cancer survivors. Look it up

  • Larry (Veteran, Alaskan)

    sent: 5:29 PM

    Government funded, so it is free and includes YMCA membership for the 12 week duration,

  • AnCan – rick

    sent: 5:29 PM

  • Eric James; Tyler TX

    sent: 5:30 PM

    Yes, muscle mass may be increased, if you haven’t already been doing resistance training.

  • Larry (Veteran, Alaskan)

    sent: 5:32 PM

    Lupron has been demonstrated to cause weight gain. I am not sure about lymphedema, though.

  • Larry (Veteran, Alaskan)

    sent: 5:33 PM

    Ask about going on an ADT “Vacation”. Stop the ADT and closely observe the PSA response.

  • AnCan – rick

    sent: 5:34 PM

    rick rd@ancan.org dr. john dr.john@ancan.org

  • Larry (Veteran, Alaskan)

    sent: 5:34 PM

    If you go on ADT vacation, do it with the supervision of your oncologist.

  • AnCan – rick

    sent: 5:35 PM

    Larry – he needs to find a new oncologist

  • Eric James; Tyler TX

    sent: 5:49 PM

    Did Dr. Epstein provide any other details? % 4 vs %3? Invasion, intraductal, etc.?

  • AnCan – rick

    sent: 5:56 PM

  • AnCan – rick

    sent: 5:58 PM

    RT machine is MR-Linac

  • Steve Roux, North Michigan

    sent: 6:07 PM

    sorry guys – I need to bug out.