8/31/2026 – Genetic Counseling for Families Touched by an Inherited/Germline Mutation Webinar
8/31/2026 – Genetic Counseling for Families Touched by an Inherited/Germline Mutation Webinar
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 11, 2026
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 11, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, 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: Toss up between the silver lining in HT treatment, and slow T recovery.
Topics Discussed
Originally AS Newbie graduates to T3 maybe T4 treatment; mono daro working but dental issues arise; Alaska doc needs a solid GU QB; pros and cons of tolerating hormone therapy; post-RP PSA still going down; … and post RT/HT PSA declining for our Poet; whole body MRI vs PSMA scans for monitoring; still getting the runaround for GU MO at Sibley – but RO set; follow up PSMA now negative for younger Gent; leg pain and fatigue likely not from HT drugs; MRI on T10 prior to spot RT; heavy brain fog suggests switching ARSI but Pluvicto follows; T recovery slow but after 7 months – don’t panic
Chat
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Steve Schuler (Seattle) sent: 3:30 PM
My Rad Onc at Fred Hutch was Jonathan Chen, and I felt like he provided competent care. My oncologist was Evan Yu; he’s been bumped up, and now it is Rajitha Sunkara. I like her.
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Jim Ekrut, Ft. Worth TX sent: 3:33 PM
I recommend Biologics by McKesson or Onco360 as specialty pharmacies with access to financial aid. I received a grant from PAN through Biologics that covered all costs for one year of Orgovyx.
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Steve L sent: 3:36 PM
UW Northwest is the location for Proton Therapy. They may also do other radiation treatment.
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Steve Schuler (Seattle) sent: 3:45 PM
I talked to my oncologist (Rajitha Sunkara). and referenced the PATCH study.
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AnCan Barniskis Room sent: 3:49 PM
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Jim Marshall, Vet Sup Grp. Moderator sent: 3:58 PM
CASODEX = Bicalutamide Jim
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Jim Ekrut, Ft. Worth TX sent: 4:12 PM
I finished eighteen months of Orgovyx June 19. It did exactly as intended alongside radiation, with my PSA <.01 and testosterone <10 for a full year. My PSA was measured Friday 8/7 , almost seven weeks post-treatment, still <.01 but testosterone has risen to 48. That said, I experienced every side effect listed on the Orgovyx website and more.
Sorry to leave, but I have another meeting commitment. Thanks for the support. All the best!
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Jeffrey G sent: 4:21 PM
How old is he?
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AnCan–John A sent: 4:21 PM
64
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Dave Lied – Pittsburgh sent: 4:23 PM
Thank you all for the informative discussion tonight. Sorry to leave early.
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AnCan Barniskis Room sent: 4:24 PM
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Bruce Schrimp sent: 4:27 PM
Thank you for the ADT article!
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Pierre D., Olean, NY sent: 4:46 PM
How reliable are PSMA PETS if PSA is undetectable?
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AnCan Barniskis Room sent: 4:50 PM
Dr. P…. not that reliable if recurrent; may be reliable if you know you have a tumor burden
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AnCan Barniskis Room sent: 5:03 PM
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Jim Marshall, Vet Sup Grp. Moderator sent: 5:12 PM
Was on ADT for 5 years, did not budge for 3+ years. Then and now less than 50, Jim
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Steve Schuler (Seattle) sent: 5:15 PM
thank you for the feedback, exactly what I wanted!
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Barry Blomquist sent: 5:15 PM
Thanks guys good information – next week.
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Steve Schuler (Seattle) sent: 5:16 PM
I had been on Zometa when I had teeth removed, and my oral surgeon gave me Pentoxifylline 400mg + vitamin E 450mg for 60 days, which is apparently a protocol that increases blood flow (perfusion ?) and reduces risk of jaw necrosis
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Jim Marshall, Vet Sup Grp. Moderator sent: 5:18 PM
When Abi caused Liver issues, I got dropped from 4 to 3 pills a day and good for the next 5years.
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Steve Schuler (Seattle) sent: 5:19 PM
EMBR worked for me moderately well, but I dropped it when I started E2, which was a great help to me
Inherited/Germline Mutations Video Chat Support Group – July 9th, 2026
Inherited/Germline Mutations Video Chat Support Group – July 9th, 2026
Welcome to AnCan Foundation’s Inherited Mutations Virtual Support Group. This is a quarterly, free, and drop-in video chat support group that takes place at 8 pm Eastern on the 2nd Thursday of January, April, July, and October at https://ancan.org/schmier.
Our group is open to anyone touched by an inherited mutation of any type. That includes carriers, family members, and previvors. We are peer-led and discuss any and all issues surrounding inherited / germline mutations. Our group may include health care providers, but they’re always there as peers.
Educational presentations are made separately – we are planning a webinar for Monday, Aug 31st, addressing “Genetic Counseling for Families Living with Inherited Mutations”. For more information on the group or upcoming webinar, please write info@ancan.org.
To sign up for a Reminder for the meetings, please sign up at https://ancan.org/contact-us/
AnCan thanks Novartis for making this event and recording possible. Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators, and Participants.
Topics Discussed:
Robust discussion around the experience of sharing a diagnosis with family members. How do you get others to test, especially offspring?
What follow-up is your Provider ordering? Is it sufficient?
Chat Log:
AnCan – Rick sent: 5:37 PM
We are definitely sponsored by Novartis as part of our Survivorship sponsorship. We’ll include it on the web page and the reminder.
David in Portland, OR sent: 6:20 PM
“Cancer Risks Associated With BRCA1 and BRCA2 Pathogenic Variants,” 2022https://ascopubs.org/doi/full/10.1200…
AnCan – Rick sent: 6:24 PM
From Bill H….. The BRCA1 mutation has an increased risk for breast, fallopian tube, ovarian, primary peritoneal, pancreatic, and prostate cancers. (from FORCE).
The Role of Genetic Testing
By: David Sharp
Finding out whether you’ve inherited a cancer-causing genetic mutation from a parent can add an important puzzle piece to your prostate cancer diagnosis. That information can affect whether you should be screened for other cancers, whether blood relatives should also consider getting tested, and even which prostate treatments you might want to pursue.
The genes most closely associated with harboring inherited mutations that cause prostate cancer include BRCA1, BRCA2, HOXB13, ATM, CHEK2, PALB2, TP53, PTEN, MSH2, and MSH6. As they pass from one generation of a family to the next, these harmful mutations (also called pathogenic variants) put recipients at increased risk of developing other types of cancers, such as breast, ovarian, endometrial, colorectal, pancreatic, and melanoma.
A germline (inherited) genetic test can reveal whether you carry any of these variants. The test will check your saliva, a cheek swab, or your blood for inherited mutations. If you have one, it exists in every cell of your body. Testing positive doesn’t mean you’ll necessarily develop another cancer, but it indicates that extra monitoring will be warranted. Aside from any cancer-causing variants you might have acquired from a parent, cancer cells can make their own mutations. A separate analysis of your biopsied tumor tissue—called a somatic test—can show if that’s happened in your case.
Learning that you have a germline variant is a red flag that other blood relatives who may have inherited the same mutation should consider getting tested, too. A positive result could also influence your treatment choices. If you carry a BRCA2 mutation, for instance, your treatment options may expand to include PARP inhibitors, drugs that tend to work best in prostate cancers with changes in that particular gene.
Having prostate cancer raises the chance that you carry an inherited variant. One analysis found germline BRCA1/2 variants in 4.47% of prostate cancer patients overall and 5.84% of those with metastatic disease, compared with roughly 0.25% to 1% in the general population.
Family history matters, too. If blood relatives have had prostate, breast, or other cancers linked to inherited variants, the case for testing is stronger. The same is true if your ancestry is associated with higher-than-normal rates of certain variants. For instance, the incidence of BRCA-related variants is significantly increased among Greenlandic Inuit, Ashkenazi Jews, and people with ancestry from Whalsay, Shetland, or Orkney in Scotland. Breast cancer studies also suggest elevated inherited BRCA1/2 rates among patients from the Bahamas, Nigeria, and Trinidad and Tobago.
If you test positive, AnCan is ready to help. We host a quarterly online support group for people with inherited pathogenic variants. It meets on the second Thursday of each quarter at 8 p.m. Eastern in the AnCan Schmier Room. AnCan also offers an email list that makes it easy for men with prostate cancer and inherited mutations to share information.