Low/Intermediate Video Chat, Sept. 9, 2024

Low/Intermediate Video Chat, Sept. 9, 2024

Low/IntermediateVideo Chat, Sept. 9, 2024

 

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.

WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.

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 https://ancan.org/veterans/

AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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

AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.

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/

Editor’s pick: The use of different labs to measure PSA, can lead to inconsistent results. CE

Special Note: Note: Rick Davis and Alexa Jett enjoyed being “live” with Dr. Mark in person for this meeting, also Andrew makes an appearance.

Topics Discussed: High PSA with biopsy; research of treatment protocols; active surveillance; MRI guided biopsy; PI-RADS 4&5 lesions; positive cores not showing up on MRI; anxiety with regards to active surveillance and treatment; elevated PSA – standing alone does not necessitate biopsy; use the same lab for better consistency in lab results; change in tumor size; diet; inflammation; IRE clinical trials; focal treatment; radical prostatectomy; cardiovascular risk factors and pacemakers; risk of infection while wearing a catheter; Decipher score; PCRI Conference; Centers of Excellence; PET scans; potential of cancer spreading outside of the prostate; abnormalities in bladder and rectal wall; SBRT; ProAct adjustable continence therapy; hyperbaric oxygen therapy and its application to prostate cancer treatment; Prostox score; reminder of the other groups such as Men Speaking Freely.

Chat

Eric M. Atlanta
Theranostics I believe is the name?

John A
Igancio, there are several ways we deal with scanxiety. Behavior: exercise, other activities ie yoga, attending groups and sharing. Cognition: distraction, cognitive therapy techniques, mindfulness, meditation. Medication: as needed short term antianxiety meds for panicky anxiety or sleep, or antidepressants which block panicky anxiety. Therapy: behavioral, psychotherapy. Time can lessen it though as rick said even us oldtimers get it, but it’s not so fresh and harsh.

Ignacio
Thank you John! Actually, I do not believe I have “scananxiety” as much as “results anxiety”, not only from scans but also from PSA tests. However, time and experience have helped quite a bit. I have accepted my situation and am willing to take actioin if needed!

Ignacio
Thank you!

John A
MedGasRes. 2018 Oct-Dec; 8(4); 167-171. doi:10.4103/2045-9912.248268 Further application of hyperbaric oxygen in prostate cancer. Lu et al

Gregg – Metro Detroit
Adios guys – gotta go!

John A
clarify spelling/pronunciation: SpaceOAR hydrogel is one brand of the 3 Mark mentioned

Ignacio

Thank you all! Gonna catch the rest of the 9ers…

 

 

Low/Intermediate Video Chat, Sept. 9, 2024

Low/Intermediate PCa Video Chat, Aug 26, 2024

Low/Intermediate PCa Video Chat, Aug 26, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.

WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.

Join our other free and drop in groups:
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!

Editor’s Pick: Leverage second opinions when in decision making mode (bj)

Topics Discussed

Following PSA levels after prostatectomy — how low, how fast, how often; understanding undetectable PSA following surgery; newly diagnosed seeks second opinion; active surveillance; getting the most out of in-person medical conferences; focal vs definitive treatment; germline (inherited mutation) testing and the Promise Study; Post radiation urinary issues — irritation and flow; managing symptoms of long covid during radiation treatment; importance of getting a second opinion from a prostate cancer center of excellence; attending PCRI conference — visit AnCan

Chat Log

Boykin Jordan (DC Metro)
A lot of fun!

Jerry Grimes, Brighton, MI
Oops, I had the wrong meeting!  All the best, and I’ll show myself out…  😊

AnCan – rick
Trends in Active Surveillance for Men With Intermediate-Risk Prostate Cancer   https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2822716

AnCan Barniskis Room
This Weds 7:30 pm PT Kelly Spillman a comedian who does a stand-up comedy routine about living with cancer will perform online at ANCAN Solo Arts Heal. Please share this if you know someone dealing with cancer. Kelly Spillman is a psychology professor, stand-up comedian and storyteller based in Los Angeles. Kelly has performed at The Comedy Store, The Improv and many comedy festivals around the country. She is currently touring her solo show I Blame Florida which is a humorous, hopeful show about her quest to beat her stage 4 colon cancer diagnosis. To Watch: Click On :https://themarsh.org/soloartsheal/ Scroll down to mid-page where you can click to view in Zoom or YouTube

AnCan – rick
Promise study https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar

AnCan – rick
Darryl – here’s our phone number to dial in 646 749 3129   #222 583 973

Jim Stewart   Reno, NV
have to sign off to get grandkids, goodnight everyone

AnCan – rick
Is he new??

AnCan – rick
ancan.org

AnCan – rick
NCI Centers  http://www.cancer.gov/research/nci-role/cancer-centers/find

AnCan – rick
NCCN http://www.nccn.org/members/network.aspx

Low/Intermediate PCa Video Chat, Aug 12, 2024

Low/Intermediate PCa Video Chat, Aug 12, 2024

Low/Intermediate PCa Video Chat, Aug 12, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.

WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.

If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box 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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/   Next Men Speaking Freely is July 18 – best place to meet if you’re feeling a little anxiety. In this room at 8.00pm Eastern https://www.gotomeet.me/AnswerCancer    Next Vets Group for healthcare and benefits navigation – Thu July 25 @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!

Editor’s Pick: We learn about focal zapping (bj)

Topics Discussed

Newbie not sure whether to attend AS, Low/Int. or both; Post radiation/ADT treatment schedule; Comparison of radiation treatment options; SBRT and fertility; When should you get a PSMA PET scan test?; Understanding biopsy results; Preparing for IRE ( electrical focal zapping) and SBRT clinical trial – is this the best option; Pros and cons of participating in a clinical trial; PCRI Conference — largest patient centric conference in the world.

Chat Log

AnCan – rick · 8:24 PM
Gents – please feel free to share your emails with each other to follow up
AnCan – rick · 9:11 PM
IRE ???
AnCan – rick · 9:16 PM
Electroporation – electrical focal zapping

Preserving Fertility for Men with Cancer: Options and Overcoming Barriers

Preserving Fertility for Men with Cancer: Options and Overcoming Barriers

Preserving Fertility for Men with Cancer: Options and Overcoming Barriers

By: Mark Perloe

For men facing cancer treatment, the risk of infertility is a major concern that is often overlooked. While fertility preservation options exist, studies consistently show that a significant proportion of patients are not adequately informed or offered these choices by their healthcare providers before undergoing potentially sterilizing cancer treatments.

The main barriers to men being aware of fertility preservation include limited knowledge and training among providers, discomfort discussing the sensitive topic, low referral rates to reproductive specialists, logistical challenges, time constraints before treatment initiation, perceptions about appropriateness based on prognosis, and patient-related factors like lack of awareness and financial concerns.

It is crucial for men to understand their options for preserving fertility, which include:

Sperm Cryopreservation (Sperm Banking)
This standard and most effective method involves collecting and freezing sperm samples before treatment for future use through assisted reproductive techniques like intrauterine insemination (IUI) or in vitro fertilization (IVF) with intracytoplasmic sperm injection (ICSI). It is well-established and successful for post-pubertal males.

Testicular Tissue Cryopreservation
An experimental approach where testicular tissue is removed and frozen before cancer treatment. The frozen tissue may potentially be used later to extract sperm stem cells for reimplantation or to induce in vitro spermatogenesis. However, no live births from this method have been reported in humans yet.

Gonadal Shielding
Protecting the testicles from radiation damage by using lead shields during radiotherapy. Its effectiveness is limited by patient anatomy and radiation field requirements.

Sperm Retrieval
For males who cannot produce a semen sample, sperm can be surgically retrieved from the testicles or epididymis through techniques like testicular sperm extraction (TESE) or percutaneous epididymal sperm aspiration (PESA). Retrieved sperm can then be used for IVF/ICSI. This invasive option is appropriate when a male cannot produce a semen sample due to conditions like anejaculation, obstructive azoospermia, or prior to puberty.

While sperm cryopreservation is the most established and successful fertility preservation method, sperm retrieval combined with IVF/ICSI can be an option when cryopreserved sperm is unavailable or inadequate. However, IVF/ICSI is more invasive, costly, and has lower success rates compared to using cryopreserved sperm for insemination.

Overcoming barriers to awareness and utilization of fertility preservation options requires improved education and adherence to clinical guidelines from organizations like the American Society of Clinical Oncology (ASCO) and the American Society for Reproductive Medicine (ASRM). Establishing formal fertility preservation programs with multidisciplinary teams, patient navigators, and educational initiatives can help ensure that men with cancer have the opportunity to make informed decisions about preserving their fertility before undergoing cancer treatments.

For questions, please contact Mark Perloe at mperloe@outlook.com

Helpful tips to be Your Own Best Medical Researcher

Helpful tips to be Your Own Best Medical Researcher

Helpful Tips to be Your Own Best Medical Researcher

AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.

Here are a few tips ensure the medical information you are researching is reliable and accurate

Book Research

Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves

Professional Presentations

Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.

Google Web Searches

Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu.  For example, type: latest NCCN guidelines for prostate active surveillance  site: .gov OR site: .org OR site: .edu

Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.

Articles, Online Posts

Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.

Anecdotal Evidence

Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:

  1. Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
  2. Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
  3. Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
  4. Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports

The phases of medical trial studies cited by published medical papers are:

  1. Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’  means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice.  Then studies move on to humans…
  2. Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
  3. Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
  4. Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
  5. Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms

Some terms regarding statistical data cited in medical journals are explained as follows:

  1. N =  the number of participants: be wary of studies with a very low N.
  2. HR = hazard ratio:  HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
  3. CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
  4. P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..

 

Editor:  Advisory Board Member and The Active Surveillor, Howard Wolinsky reminded us of another presentation AnCan presented a few years back A Layperson’s Guide to Reading Medical Research – watch it!

Low/Intermediate PCa Video Chat, Aug 12, 2024

Low/Intermediate PCa Video Chat, July 22, 2024

Low/Intermediate PCa Video Chat, July 22, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.

WELOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.

If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box 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… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/   Next Men Speaking Freely is July 18 – best place to meet if you’re feeling a little anxiety. In this room at 8.00pm Eastern https://www.gotomeet.me/AnswerCancer    Next Vets Group for healthcare and benefits navigation – Thu July 25 @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!

Editor’s Pick: You rarely get out of cancer Scott-free; and treatment decisions complicated by other chronic conditions  (rd) 

Topics Discussed
Evaluating treatment plan options (radiation, surgery, and hormone therapy) and quality of life issues associated with treatments; Participating in the RTIRE trial for treatment; Understanding different medical reports and tests for prostate cancer; Getting a third opinion to decide between surgery and radiation while seeking the best quality of life outcomes; Life after treatment and having the right mindset; Choosing a treatment option when other chronic conditions/diseases exist; What makes focal treatment a good option.
Chat Log
Jim Stewart Reno, NV sent: 6:25 PM
have to pick up grandkids so signing off….see you all next time!!
AnCan – rick sent: 6:46 PM
AnCan – rick sent: 6:49 PM