AnCan respectfuly notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussion 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!
Editor’s Pick: Understanding toxic exposure risk activities (TERA) and what its gets you in secondary medical insurance coverage and how do you qualify. (bj)
Topics Discussed
Understanding toxic exposure risk activities (TERA) and what its gets you in secondary medical insurance coverage and how do you qualify; collecting Special Monthly Compensation (SMC) for loss of use of a creative organ when you have a prostate cancer diagnosis; heart disease and Vietnam veterans and getting access to Pluvicto; dealing with biochemical recurrence of prostate cancer and submission of claim; learning how to become your own agent and advocate for submitting VA claims; free lodging when traveling for cancer treatment available through the American Cancer Society (ACS); 90% VA disability rating but paid at 100% based on Total Disability Individual Unemployability (TDIU); what is the criteria for VA disability pension for surviving spouses; understanding the claims process.
AnCan respectfuly notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussion 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!
Editor’s Pick: It’s important to work with a Veterans Service Office (VSO) that has your best interest in mind and is working on your behalf. (bj)
Topics Discussed
Claims for Prostate Cancer (PCa) and Chronic Kidney Disease (CKD); PSTD; pension for surviving spouse; problems with VSOs; VA decision process; staying on top of your claim paperwork after submission; submitting a claim for prostate cancer; how to get a second opinion; lessons learned using VA community care — keep your paperwork for bills management; understanding VA appeals; living with Parkinson’s disease and secondary conditions.
Chat Log
Alexa Jett – AnCan Foundation
That’s considered High Risk
Bill O’Brien, Northern VA
Mark, good info! Thanks so much!
Bob Schwartz, USN, Venice FL
Good Mtg., have to go, take care.
Carl Friedrich
A great meeting but I will take my leave. See you next time and many thanks for all the help. Fantastic! Many thanks to all
AnCan – rick
Going to leave you Gents – hope to see you again later in the month. Watch this space for our Vets Speaking Freely. O&U
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 11, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostic.
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
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: A long discussion on dealing with ADT-induced edema. (bn)
Topics Discussed
Swollen ankles and face, “incredible pain in my hips,” spiking blood pressure — these are common with ADT, and the medoc should be taking charge; a fruitful exchange follows about blood pressure, bone strengtheners, and edema; radonc we like surprises us by treating 7 tumors with spot radiation; osteoarthritis doesn’t seem a likely cause for a positive PSMA; Tennessean likes Dr. Antonarakis, who’s great — but Dr. E’s closer; what are the right questions to ask his radoc before starting treatment?; you can’t know how much ADT will affect you — but exercise definitely helps.
Chat Log
Steve Roux, North Michigan · 6:26 PM
abiraterone and prednisone can both raise blood pressure.
AnCan – rick · 6:31 PM
Boniva or Reclast are the injectable bisphosphonates
Gary V Portland, Oregon · 6:35 PM
Would recommend Sectral as Beta blocker much more effective at controlling heart rhythm issues.
Jim Marshall, Alexandria, VA · 6:37 PM
For my heart Bypass follow on and the Edema in the legs there are Compression Socks.
Wes – San Diego · 6:43 PM
Yes, elevation above the heart, which can be hard to do even at night, or hard on the hips. But compression socks or anklets are both helpful.
Wes – San Diego · 6:45 PM
Good compression socks are expensive, $30 each. But well worth it. Huge door I did not know after 10+ years of eroding my foot bones and pain via gout, with near constant edema, especially in my lower left leg.
Jim Marshall, Alexandria, VA · 6:45 PM
Compression socks from the VA come from “Ames Walker” retailing for around $34. Be sure to get the meausrement right. They work well. Jim
Dr Jeff · 6:46 PM
$30 for a good pair is on target. Have your family and friends buy them for you for your birthday. Well worth the $
Dr Jeff · 6:48 PM
You probably need 20-30 mm Hg
Jerry Grimes, Brighton, MI · 6:53 PM
Search Dr. Richard Wassersug online for information about estradiol therapy for recurrent/advanced prostate cancer.
He has spoken here before:
AnCan – rick · 7:08 PM
Estradiol Session recording with Richard Wassersug https://ancan.org/talking-estradiol-e2-for-recurrent-and-advanced-prostate-cancer/
david opp · 7:25 PM
I was attacked by a cow and had bruised and 1 cracked ribs, 2 weeks later a PSMA scan lit up those bruised ribs but the radiologist did not give a suv number saying this should be confirmed by patient information.
Michael – TN · 7:41 PM
I had trouble getting in touch with Dr E and noticed there was a typo in the email address provided in the emails and other groups.
Here is the right contact gdeliguori@imppllc.com
Craig Christensen · 7:51 PM
Recommended rad oncs at Irvine City of Hope for MR guided RT?
AnCan – rick · 7:52 PM
Percy Lee GU RO https://www.cityofhope.org/percy-lee
AnCan – rick · 7:53 PM
Kishan UCLA RO https://www.uclahealth.org/providers/amar-kishan
TonyFig · 8:02 PM
Dr. Sholtz thoughts on radiation versus surgery https://www.youtube.com/watch?v=aGEVAWx2oNs
Craig Christensen · 8:04 PM
Decipher range is 0 to 10
Len Sierra · 8:04 PM
Just be aware that Scholz has a strong bias against surgery.
Wes – San Diego · 8:12 PM
Note should take K2 with D3; I take 5K-10K/day and finally got back to normal range, took years; and I live in SD and see the sun routinely.
With Open Enrollment starting on October 15, two AnCan’rs asked for advice this week on Medicare plans – and yes it’s complicated. AnCan recommends you watch the webinar we held last October to help understand the difference between traditional Medicare and Medicare Advantage. The dollar details are different for 2025 but not the principles.
Lastly, my own health insurance broker, Kim Umphres, is licensed to write in 15 States. He offered his help to all in last year’s webinar, so take him up umphres100@yahoo.com
Since the same questions are likely in the mind of many others, I have written this Blog Post. I am no expert but this may illustrate how I think about my own health insurance. Sadly, I cannot help you all individually – consult with your own Medicare health insurance for the best advice.
Onward & upwards, rick
Many of us on Medicare are faced with renewing our plans – or buying a plan for the first time. If you choose not to buy a plan to supplement Medicare, it leaves you exposed to roughly 20% of your medical costs. That can amount to very big bucks!
The main choice is whether to opt for Traditional Medicare + a Supplement (Medigap) Plan + a Drug Plan. Alternatively, a Medicare Advantage Plan can look attractive but comes with warts.
If you are low income and cannot afford the available plans, there are Medicaid alternatives for Medicare supplements.
Advantage Plans (Plan C) restrict your choice of Health Care Providers since they are based on Provider Networks. If you need a particular type of specialist, for example a genitourinary medical oncologist, or a neurologist who specializes in MS, this can be a problem with Advantage. Community Standard of Care is often the byword. If you choose an Advantage Plan, be sure it covers HCPs who practice at a Center of Excellence.
Advantage Plans usually have small monthly premiums, sometimes zero. They also include co-pays when you visit a Provider. Co-pays can be anywhere from Zero dollars to several hundred for fancy scans like PSMA, so you have to look carefully at the coverage. The more you use the plan, the more you pay. Some may include coinsurance – avoid those altogether. It’s a nuance we won’t get into here.
You can also go out of network to a Provider of your choice, but copays will be significantly higher. For example, you may pay $50 for a visit to a specialist in-network. Out-of-network, the cost can be significantly higher – often 40% of the approved Medicare fee for the service sought.
Advantage Plans often have a Gatekeeper who must approve any referral. You may not be able to self refer. Also there can be stricter intervention by the Plan to pre-approve procedures.
Drugs are included, however there is also a co-pay for some generic and all branded drugs that depends on the tier in which they are classified in the Plan’s drug formulary. List the drugs you use and find the cost. That said, the good news in 2025 is that drug out-of-pocket costs cannot exceed $2,000.
Traditional Medicare with a Supplement (Plans F,G,K,L,M,N) may not restrict your choice of HCPs – you can go anywhere in or out of state provided the Provider accepts Medicare.
Traditional Medicare Supplement Plans cover the 20% not covered by Medicare A and B. You pay a monthly premium that varies according to the plan chosen. The different supplement plans have different features. The more you pay in monthly premium, the less the restrictions and the lower the deductibles.
In addition you will need drug coverage (Plan D). Again that includes a monthly premium, plus a charge for each drug, so you have to shop plans against your Rx. For 2025, drug out-of-pocket costs cannot exceed $2,000.
As long as your chosen Provider accepts self-referrals, there may be no Gatekeeper. Procedures and protocols may still be subject to pre-approval.
Since Advantage Plans can be more profitable for the Payer, they offer lots of bells and whistles to sell the plan – for example subsidies for OTC products. One plan I was offered recently, actually pays the Holder $5/month!
I’m trained as an economist so I look at risk reward. I compare the annual maximum out-of-pocket cost between the Advantage Plan and the Traditional Medicare Plans (inc. the drug plan).
For traditional Medicare There is a required monthly premium for both the Supplement and the Drug Plan. Add those together and multiply by 12. In addition you can have out-of-pocket drug costs, especially if you are using expensive cancer drugs, but that cannot exceed $2,000 in 2025. Btw, the $2000 will decrease in subsequent years.
Each Advantage Plan has a stipulated maximum out-of-pocket cost for in-network and out-of-network Providers. In-network will be less. I look at the out-of-network max, and add to that any monthly premiums that are usually minimal. Drugs are included with a co-pay, but that co-pay cannot exceed $2,000 in 2025.
Now that I know what I HAVE to pay with Traditional + Supplement vs what I could pay with Advantage depending on my usage, I can compare whether I want to roll the dice to save money.
If the Traditional route costs me $500 in monthly premiums, I know I am out-of-pocket $6,000 plus my drug copay costs capped at $2,000.
Say my Advantage Plan has a monthly premium of $25, then for sure I am out of pocket $300. The rest depends on how much medical care I use. Assume ( the economist’s favorite word) the out-of-pocket for out-of-network in my plan is $8,000, that is my max. I still have to consider up to $2,000 for drugs.
Let’s compare!
IN THE WORST CASE I am spending $6,000 (+ drugs) for Traditional Supplement versus $8,300 (+ drugs) for Advantage. The Advantage could be $2,300 more pricey.
IN THE BEST CASE, I am out-of-pocket $300 (+ drugs) for Advantage vs $6,000 (+ drugs) for Traditional Supplement, so I could save $5,700 with Advantage.
Risk-Reward… do I want to roll the dice to save up to $5,700 that could cost me an extra $2,300??
Each person has to make that decision.
There’s more to it than this. For example HMO’s like Kaiser Permanente may make it even harder to go out of network. And with KP, you are guarantied to only get community Standard of Care medicine . As I often say, KP is great as long as you don’t get seriously ill.
AnCan strongly suggests finding a local Medicare Health Insurance Agent to help you sort through this morass. Plans change by State, so your agent must be licensed in your State.
And one last thing. The first time you enter Medicare there is NO underwriting. No matter your preconditions, you are accepted to any Traditional supplement or Advantage Plan. In subsequent years, you may be subject to underwriting should you choose to switch plans. You can be restricted from changing between an Advantage and Traditional Supplement Plan.
AnCan recommends watching our webinar from last October to help understand the difference between traditional Medicare and Medicare Advantage. 2025 details are different but not the principles.
We also recommend you visit the Triage website and attend its free webinars. Many of their Medicare resources can be found at https://triagecancer.org/medicare-cancer
For differences between the Traditional Supplement Plans, consult with a specialized Medicare Health Insurance agent. F and G are the best options. There are also high deductible options. An agent can also help you compare Advantage plans by various criteria, like maximum out-of-pocket for out-of-network care.
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
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:
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.
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.
Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
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:
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…
Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
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.
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:
N = the number of participants: be wary of studies with a very low N.
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.
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.
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..
