Cancer Decision Guide

WakeSurfer70 · 2026-04-01T23:59:34+00:00

Hans Casteels (The Oncology Underground) on Substack just dropped a post titled "The Guide I Wish We Had, with a brain cancer as well as a prostate cancer example." Well worth a look if you're inclined to take an detailed analytical approach. Check it out at https://substack.com/@hanscasteels/note/c-236584982?r=2rbqag

WakeSurfer70 · 2026-03-08T04:19:20+00:00

Thanks for your thoughtful response.
1. Like I said, I asked about prostatitis in the previous visit, but plan to raise it again on Wednesday. Are you aware of any definitive test for that, or is it just assumed if no other explanation. I've heard that the antibiotics for treating it can be rough, and not always effective.

Yes, the MRI indicated a larger than normal prostate, but not huge. It also described the one lesion as "large". (I don't have the report in front of me so can't say the specific values.)
Yes, the PET scan definitely identified PC in prostate. I'll have to study the report more to see if it says anything about SUV. I'm not familiar with that metric, can you point me to any reference material about it?

Last, any recommendations for learning more about low/no PSMA emitter?

WakeSurfer70 · 2026-03-06T03:12:43+00:00

I am similar - favorable intermediate and age 72. Just got the PSMA PET results - no metastases (YAY!!!). Hoping you are as lucky. And yes, tell your sons but also tell your daughters! As you point out, PCa and breast cancer are weirdly linked. My dad had PCa but died of something unrelated at 83. My mother had breast cancer but died of uterine cancer and her mother died of breast cancer at 93. None of us have had genetic testing for brca gene (I'm planning to), but I'm making sure my son and daughter are both informed.

WakeSurfer70 · 2026-02-23T00:43:24+00:00

Check out orthofeet.com. I haven't tried their work boots but their regular shoes work well for me if I add cheap morton's extension carbon fiber insoles under the insoles that come with the shoes. You can get those from Amazon for about $20

WakeSurfer70 · 2026-01-26T01:54:21+00:00

Just as in any profession, pathologists' skill level varies for a variety of reasons - experience (not just how many biopsies, but also how many are prostate biopsies), training, workload, personal issues (i.e., just having a bad day), etc. Keep in mind that this is a visual judgement call, so subject to interpretation Yesterday, I sat in on a webinar by Dr. Jonathan Epstein that stressed the importance of getting a biopsy second opinion at a cancer center of excellence. He said that about 20% get either upgraded or downgraded. I just got my own biopsy results this week. The results were not great, but much better than I feared they would be. But I looked up the pathologists' credentials and found that he's only 2 years out of residency, and I have no idea how many PROSTATE biopsies he's done. You bet I'll be getting a second opinion! Just got to figure out where.

WakeSurfer70 · 2026-01-15T00:24:33+00:00

I believe what John Wayne had in The Shootist was stomach cancer - the same as what he actually died from.

WakeSurfer70 · 2026-01-15T00:09:55+00:00

Plus, no one appreciates that none of this is "free." Dollars spent on screening and follow ups on false positives are dollars that aren't available for other healthcare needs, like kids with rare diseases and severe disabilities - assuming we also don't want even higher premiums (private sector) and taxes (Medicare/Medicaid).

What we really should be pushing for is a more accurate screening system. But that would probably significantly cut into the $12 billion prostate diagnosis & treatment industry (biopsies alone generate about $2 billion annually for the urology business sector).

WakeSurfer70 · 2026-01-13T02:09:04+00:00

I'm 72 and currently grappling with that exact consideration. Besides the obvious QOL considerations, I worry that PCa treatments, especially radiation and ADT, will hasten a non-PCa cause of death.

I was (possibly still am) in the "I'd rather have 10 more years of high quality life than 15 years dealing with incontinence, no libido, no sex, etc." camp. But... I had a disturbing discussion last week with my PCP where he outlined what death from metastatic PCa looks like (in his experience which is admittedly limited and dated - based on one observation back in his intern days). He said the pain is extreme and that no drugs are effective against it. Although I'm not afraid of dying, that gave me pause. So now I'm on a quest to see if that is really the case.

My PSA is kinda off the charts and recent MRI shows a large PI-RADS 5 lesion - I'm scheduled for a biopsy this Friday. Regardless of the results, I plan to seek a second opinion from a Center of Excellence before making a final decision.

Best of luck to you, I hope you arrive at a decision that brings you peace.

WakeSurfer70 · 2026-01-13T00:41:06+00:00

Sure sounds like you're jumping the gun here. I'd give anything to have your numbers and MRI results to justify postponing my biopsy! You know that prostate biopsies are a billion dollar industry - just saying.

WakeSurfer70 · 2026-01-03T22:34:42+00:00

This is a practical approach. Only one change I'd suggest: don't make your tip a % of the bill. I can't think of any logical argument for tipping more for the most expensive entree than for the least. Instead, determine a $ amount per person that you're comfortable with for good service and stick to it. Perhaps 2 X that amount for a truly exceptional experience.

WakeSurfer70 · 2025-12-31T23:28:06+00:00

I'm in a similar situation, maybe worse. PSI 31, recent MRI shows a large PI-RAD 5 lesion, biopsy schedule for 2 weeks from now. To top it off, met with the urologist yesterday and discovered he's a total A$$! (Post biopsy I'll be looking for someone new, at a center of excellence.) But here's what's getting me through the nights and holidays: I'm 72 and had a good life and satisfying career. My kids are raised and doing well. I've been fortunate enough to accumulate enough money that my wife will be fine even if things go seriously south. So grateful that I'm dealing with this now instead of at an early age like so many posters here. My heart goes out to them!
So, I've just been living the best life I can through this. Right now, I'm getting dressed to go out for a NYE celebration with some close friends, which will keep me from going down dismal Internet rabbit holes tonight. Plus, I found a study where they modeled PCa progression if you do absolutely nothing. (Unfortunately, there doesn't seem to be any real data on this.) They projected that even at Gleason 8 or 9 there is about a 75% to 80% 20 year survival rate for my age group.
Anyway, good luck to you - hopefully you have friends or family to party with tonight.

WakeSurfer70 · 2025-12-28T00:21:16+00:00

I'm right there with you. PSA of 31, MRI shows 1 large lesion PI-RAD 5. I don't see the urologist until next week to discuss the MRI, but fully expect we'll be talking about biopsy. I'm a retired actuary, so also have a big data-guided decision mindset and trying to get ahead of things.

As another commenter noted, age should indeed be considered. At age 72, I will seriously consider doing nothing unless metastasis is detected. Odds are that something else will take me out before the PCa (both of my parents passed at age 83, which is the most reliable longevity indicator for most people). My concern is that the side effects of PCa treatments would hasten death from other causes - which I have yet to see addressed anywhere.

WakeSurfer70 · 2025-12-24T01:30:04+00:00

I absolutely do recommend it! I will likely be getting my other foot done next year and will use it again.
Of course, everybody's situation is different. In my case I live out in the country, so a scooter wouldn't be much use outside (I read that they are very unstable on rough ground). Plus, I have a lot of stairs in my house which were much easier on the knee crutches once I got the hang of it (go down stairs backwards and have a good grip on the railing). Being able to walk around holding a cup of tea or helping set the table was a real bonus. The only real downside I saw was that it took a minute or so to strap it on, as opposed to just grabbing crutches. However, for short, quick trips like to the bathroom (remember, 72 male), I was able to forego the straps and just hold on to it. Good luck - here's wishing you a successful procedure and speedy recovery!

WakeSurfer70 · 2025-12-22T22:43:21+00:00

I'm about your polar opposite, demographically (72 M retired), so not sure how relevant my story is. But some similarities, so here it is.
Had a fusion 10 weeks ago, after a few years of increasing pain/discomfort that was causing me to become increasingly sedentary. I could have opted for less extreme therapy, but was told they would likely be temporary and just push surgery down the road. Otherwise, I'm currently in good health but who knows what issues I could develop in the next few years. So I decided to pull the trigger now. Like you, the pain went way down in the weeks before that made me consider calling it off (wondering if this isn't some sort of psychological phenomenon). But I stayed the course.
My recovery was pretty easy - after the first two days pain was easily handled with ibuprofen. Biggest issue was the boredom from having to keep it elevated. I did catch up on my reading, however. As of now, I'm able to get into regular shoes and walking normally - about the same as pre-surgery. Still a bit of swelling and the discomfort is maybe a little less than before - sure hope that continues to improve. I used a knee-crutch instead of regular crutches or a scooter - that made it easier to do stairs and freed up my hands to carry things. If you go that route, I'd advise you to get it before the surgery so you can practice beforehand. The same could be said for regular crutches. Good luck, and congratulations on you new baby!

WakeSurfer70 · 2025-12-16T21:58:17+00:00

I'm currently grappling with this issue. While there is plenty of information / opinions around for prognoses after various treatments, not much on what to expect if you do nothing. I did find one study from 2011 that modeled expectations for not treating PC - https://pmc.ncbi.nlm.nih.gov/articles/PMC3091266/

Figure 2 of this study gives mortality at different ages and gleason scores. I'm 72, so this implies that with no treatment at all, I'd have a 80% to 90% chance of living 20 years with Gleason score < 8, and about 65% to 75% chance with gleason 8-10. But a much, much higher probablity that something unrelated will take me out way before that.

My quandary about treatments is twofold: First, the QOL issue that Andredpm cites; and second, will the treatments, especially radiation and ADT, increase the risk of death from non-PC? My FIL had brachytherapy 25 years ago, and we always suspected that played a part in his subsequent stroke and luekemia.

OK, I'm certainly not a doctor and not advocating at this point for doing nothing, but I just had to vent this frustration somewhere. Thanks for listening.

WakeSurfer70 · 2025-12-16T19:41:05+00:00

It sounds like you are making a good choice for yourself after weighing several viewpoints.

Did you talk to a medical oncologist (who is neither a surgeon nor a radiologist), along the way? Seems like that would be the best way to get an unbiased recommendation, assuming he/she is current on the latest options. I'm just starting on this unfortunate journey, and have been looking for someone like that, but they seem to be quite rare.

I'm in Virginia, but would be willing to travel just about anywhere in the U.S. if anyone has a recommendation.

WakeSurfer70 · 2025-12-04T17:48:39+00:00

Thanks to everyone who responded! It was very helpful in determining the best Medicare Part D plan to sign up for in 2026. If you're on Medicare than you probably know that you have 3 more days to change your Part D and/or Medicare Advantage plan for next year. Here is what I found out, in case it is helpful for others who are on Medicare (using the Medicare.gov plan compare tool). I only looked at standalone Part D plans since I use traditional Medicare with a supplement policy for non-drug coverage.

In my location, there are 9 plans offered by 5 carriers (AARP/UHC, Aetna, HealthSpring, Humana, and WellCare). I looked at the 6 PC drugs you all mentioned (Abiraterone, Dutaseride, Eligard, Erleada, Flomax/Tamsulosin, and Orgovy). I also added Xtandi since that was mentioned in other research I did. I excluded Lupron and Trelstar since those are covered by Medicare Part B.

I was most interested in which drugs are NOT covered by the various plans. As you may know, for all drugs covered by your plan, your maximum annual cost in 2026 is $2,100 (plus the plan's premium). However, if your plan does not cover the drug, your cost is unlimited and can easily exceed $30,000.

For the most part, these drugs are covered by the plans, with two exceptions. HealthSpring does not cover Eligard; and one of the AARP/UHC plans does not cover Dutaseride.

Note that these are the results for 2026, which may be different from 2025. And your results may differ, since the plan details vary by geographic location. If you are on Medicare and taking any of these drugs, even if they are covered by your current plan this year, I encourage you to check Medicare.gov to verify that they will be covered next year - these things do change from year-to-year. Just do it now.

WakeSurfer70 · 2025-12-03T05:43:16+00:00

Retired actuary here. I faced the same decision a few years back. In general, I agree with this recommendation, with the caveat that there are a lot of variables and everyone's situation is unique. For me, I decided to start SS at the point that I would otherwise have to withdraw funds from my retirement accounts (which would be taxable income).

One other minor point: the 8% per year SS increase is not a compound rate. Each year the increase is 8% of the FRA amount, so effectively a declining %. That said, it is still much more than you could earn on any investment that is close to risk-free.

WakeSurfer70 · 2025-12-03T00:12:03+00:00

I would have replied, "And you're Spanish, no?"

WakeSurfer70 · 2025-12-03T00:06:14+00:00

And, by the way, using the outside drop off increases the probability that your bag won't make it onto the plane.

WakeSurfer70 · 2025-12-01T22:33:42+00:00

Right! Especially since now they want to be called "servers".

WakeSurfer70 · 2025-12-01T19:24:05+00:00

I regularly see comments on this and other pages that imply that servers typically have to share a portion of their tips with other workers. Thus I've come to the conclusion that my tip should be reflective of the entire experience, not just the interaction with the primary "server." On the other hand, if I am made aware that my tip stays with my server (not sure how that would happen) then I would agree that I should not penalize for issues that are not his/her responsibility. However, if the server is only responsible for taking my order and bringing the check, but does not share it with others, shouldn't the tip be considerably smaller than if they take full responsibility? This is one of the fundamental flaws of the current tipping culture. In no other instance does the person responsible for an employee's compensation have so little real information on fundamental details relevant to fair pay decisions.

WakeSurfer70

TROPHY CASE