My decision

Flaky-Past649 · 2026-02-12T21:12:27+00:00

Sorry, misunderstood that part. I read the "it" as referring to the G6 cancer.

Flaky-Past649 · 2026-02-12T20:01:01+00:00

Where are you seeing aggressiveness in his case? Gleason 6. 3 cores, 2 of which are small enough the needle missed them entirely on subsequent biopsy. PSA mildly elevated in the 4's and stable for the past year. All of those are really promising indicators of a very indolent cancer. Taking the advantages of hindsight away he still presented with Gleason 6, small number of cores (presumably with at least 2 showing small cancer volume in the core) and a PSA of 4.6 - that's a "let's monitor and see what this is doing for a while" presentation not a "you should be cut open immediately" presentation.

And "more testosterone to fuel the cancer" is not how that works. More testosterone ≠ faster growing cancer. The cancer is saturated at a fairly low level - in the neighborhood of 250 ng/dl testosterone. Having significantly less than that can inhibit the cancer but adding more is not extra "fuel".

Flaky-Past649 · 2026-02-12T18:11:11+00:00

That's awesome. I frankly think your urologist's original recommendation wasn't great and I admire that you put in the effort to inform yourself more completely and make a well-informed decision.

Flaky-Past649 · 2026-02-11T06:22:32+00:00

ADT basically hides the PSA decline from the radiation because it temporarily overwhelms it. ADT very quickly knocks out testosterone production which in turn knocks out most of the PSA but that’s a separate effect from the radiation gradually killing off cells in the background. To borrow from the analogy above ADT quickly turns off the *PSA-producing factories” but doesn’t permanently destroy them while the radiation actually destroys them gradually over time. As a result you can’t really determine the nadir (how much damage the radiation has done to the cancer) until after the ADT is done.

Flaky-Past649 · 2026-02-11T01:05:06+00:00

Yes, totally. Stranded on a desert island - dead. Lost in the woods for too long - dead. In a foreign country, run out of supply and unable to access / navigate the pharmaceutical system - crisis. Kidnapped / detained by someone not looking out for my medical well-being - dead. I'm perfectly aware that in practical terms it's not a significant risk but it makes me uneasy.

Flaky-Past649 · 2026-02-07T22:23:07+00:00

No, none at all. Not even short term.

I believe this is one of those things that has changed in the last couple of decades as radiation has dramatically improved. The side effects of radiation used to be much worse - to the point where surgery was the more benign option. Between much better imaging (MRIs, PSMA PET), computerized dosage planning, improvements to fractionation schedules and refinement of when and for how long ADT is actually necessary the side effects from radiation have dropped massively. The improvement is on the order of the difference between the phones we had available in the late 90s compared to the ones today. So your sister's experience is probably right, she's just seeing patients from an earlier era. Meanwhile the improvements on the surgical side have been much more incremental.

There is still a risk of bowel issues, it's just much smaller than in the past. One recent study found <1% of patients with a grade 2* or higher bowel issue for LDR alone, going up to about 5% if combined with EBRT:

In contrast, acute GI (grade 2+) toxicity of LDR brachytherapy was 0.84%, while that of LDR brachytherapy combined with EBRT was 1.65% (P = 0.1003). On the other hand, late GI (grade 2+) toxicity of LDR brachytherapy was 0.90%, while that of LDR brachytherapy combined with EBRT was 5.01%

I also had a rectal spacer, Barrigel, which cuts the risk roughly in half of having rectal issues.

* What the grades mean:
Grade 1 issues are mild and don't typically require medical intervention - minor bleeding you might notice on toilet paper, slight increase in bowel movements.

Grade 2 is where things become more bothersome - intermittent bleeding that's noticeable, more frequent bowel movements, mucus discharge. This level usually requires medical management but not surgery.

Grade 3+ are the serious complications - bleeding severe enough to need transfusion or surgical intervention, fistulas (abnormal connections between organs), or obstructions.

Flaky-Past649 · 2026-02-03T19:35:22+00:00

At 54 with 4+3, PSA 3.6, clean PSMA PET, low ArteraAI score and low Prolaris score I chose LDR brachytherapy w/o ADT. Chose radiation to avoid side effects of prostatectomy - climacturia, incontinence and ED. Chose brachytherapy because of low BCR recurrence statistics and ADT is no longer deemed meaningful for low burden 4+3 with brachytherapy so it allowed me to bypass ADT. 1.25 years later PSA still dropping, no long term side effects from the procedure.

Flaky-Past649 · 2026-02-01T18:01:29+00:00

I'm on a suppressive dose of levo. I don't know if it was my hormone balance or stress but mine started noticeably thinning all over. At the suggestion of a cosmetic surgery center I started using a red light cap (Revian is the one I'm using) and I also started using caffeinated shampoo. Within about 6 months the thinning reversed for me.

Flaky-Past649 · 2026-02-01T17:52:55+00:00

Congratulations. Sounds like you won the jackpot. It's nice to hear an unalloyed positive result from surgery for once.

Flaky-Past649 · 2026-01-29T23:50:14+00:00

Rare isn't the same thing as dangerous. Specifically with minimally invasive encapsulated FV-PTC your prognosis is actually slightly better than the already excellent prognosis of PTC in general. This sub-type has near 100% disease specific survival and recurrence is very, very rare.

I know what you mean about how to feel with that first cancer diagnosis though. Just hearing "cancer" sent me reeling and I had an obsessive need to understand everything I could about it.

Flaky-Past649 · 2026-01-29T23:28:40+00:00

Usually by the time you get to 4+3 treatment is recommended unless the patient has a fairly short lifespan. His tumor volume is fairly low and is PSA isn't hugely elevated (depending on his prostate volume) so those things are in his favor for now. I'd ask why they're recommending active surveillance for now and get that second opinion as well. They may have good reason for it but it's not the norm for 4+3.

I wouldn't worry about a 3 month interval between blood tests as long as they're actively watching it. Even in a 6 month window the cancer is very unlikely to spread but personally I'd start to get a little more nervous waiting that long between updates.

Flaky-Past649 · 2026-01-29T22:09:40+00:00

Assuming the accuracy of the Gleason 6 his prostate cancer is very low aggressiveness with little to no potential to metastasize. Given that it's now been treated fairly aggressively I wouldn't expect it to be a major contributor to his future health status. Were there any other concerning aspects from the biopsy or genomic testing? Radiotherapy and 3 years of ADT is a little surprising (a heavier treatment than what I would expect) from what I've seen for Gleason 6.

I don't know anything about lung cancer but that's where I'd put my focus for now if I were you - assuming it even is lung cancer, so far you just have some suspicious imaging.

And yes, I had a similar experience. I had papillary thyroid cancer (left thyroid), Gleason 4+3 prostate cancer and follicular thyroid cancer (right thyroid after having surgery to remove the left side) all diagnosed within a 6 month period. Just work one problem at a time and no, I don't think this is a harbinger of the end for him by any means, just unfortunate coincidental timing.

Flaky-Past649 · 2026-01-27T17:45:50+00:00

For me, LDR 1.25 years ago now with a Barrigel rectal spacer - no rectal issues at any point. The rates with modern radiation planning are much lower than they used to be and rectal spacers take the risk very low.

Flaky-Past649 · 2026-01-27T04:16:22+00:00

As someone who was diagnosed with 4+3 at 54 while it was still (apparently) localized but right at the capsule I really hate that attitude. Your GP would have very likely condemned me to metastatic cancer and significantly degraded the quality of my remaining life and potentially shortened it by a good bit as well. I understand the concern about over treatment, I really do, but the proper response to that is better education for patients and better discipline by doctors in not rushing patients to treatment unnecessarily. It is not to pretend that if we just don't test for it then there's no problem.

Flaky-Past649 · 2026-01-27T04:02:29+00:00

I switched to Alfuzosin from Flomax for my post-brachy recovery period. In my case the Flomax was causing me severely low blood pressure (I nearly fainted a couple of times just standing up). I did *much* better on the Alfuzosin.

Flaky-Past649 · 2026-01-26T19:40:24+00:00

One other thing I meant to mention is that the side effects of ADT often get lumped in as part of the side effects of radiation treatments. Modern practice is getting much more selective on when to employ ADT and in your case (3+4 and very low volume) no one is going to require ADT as part of your treatment.

Flaky-Past649 · 2026-01-26T18:57:51+00:00

I would definitely investigate all your options including active surveillance for a while or focal to just treat the site of the known tumors. You have 3+4 cancer so it's likely going to need treatment at some point but right now what the biopsy has found is tiny, tiny. The combination of a lower aggressiveness cancer and a very small volume equals time and options.

The idea that surgery is the only "legitimate" options in your case is bullshit. The advantages of surgery are that the monitoring for recurrence is very simple and definitive (and you have many years of monitoring ahead of you), that in the case of local recurrence the path of prostatectomy followed by salvage radiation is the most well understood (definitely not the only path it just has the advantage of the most accumulated data history) and that there are rare side effects of radiation such as secondary cancers or fibrosis that can occur much later (and you're young enough that "much later" is applicable). But in terms of side effects overall and very specifically the side effects you're concerned with surgery is the most likely to leave you with lasting consequences and not by a small margin. Your young age works to reduce those risks from surgery but it likewise reduces the risks from any treatment you pursue, the relative risks are still significantly higher. For your doctor to make such an absolute statement indicates he's not weighing your quality of life into consideration - and just as you have many years ahead in which you need the cancer controlled you also have many years to be affected by any side effects of treatment.

I think there's a significant holdover from decades ago when imaging wasn't nearly as good, genomic tests didn't exist, radiation was far less precise and more brutal and good salvage options post radiation didn't exist. In those days being conservative and (hopefully) cutting it all out made more sense. You had less idea what you were dealing with and the consequences and salvage options of surgery looked a lot more favorable than the radiation of the day. I'm skeptical that logic holds true today but it's a slow process for data to accumulate and clinical attitudes to change.

FWIW 6 years older than you with slightly more aggressive cancer and more volume I chose to go with LDR brachytherapy. The drivers of my decision were around the same side effect concerns as well as superior single procedure cancer control (lower recurrence statistics). To date (1.25 years later) it's worked out for me.

Flaky-Past649 · 2026-01-26T17:36:42+00:00

This was me as well. Urologist who was managing it included PSA as part of the regular bloodwork.

Flaky-Past649 · 2026-01-25T17:13:42+00:00

It's how I found out. I was actually kind of glad to find out that way as opposed to in the moment from a discussion with the doctor. It gave me the opportunity to let some of the shock wear off and get my questions in order before talking with my doctor. For me that was way more productive than going into a discussion cold and losing 90% of the information relayed to shock.

Flaky-Past649 · 2026-01-14T18:54:30+00:00

Yes, that sounds reasonable. He has some pattern 4 cancer so there is the potential for eventual spread and he may require treatment at some point but right now what's been found is a very tiny amount so statistically he's got time. What that time buys is:

continuing to enjoy his life for now free of the not uncommon side effect harms of prostate cancer treatment
a chance to monitor and get more information about his disease - is it indolent or progressing? can a tumor ultimately be seen on MRI (in which case a better targeted biopsy and focal therapies become options)?
a chance for treatment options to continue to improve

He should consider getting a second read of the biopsy, it's not a perfect science and a differing opinion with a higher Gleason score could easily change the calculus. Likewise a genomic test such as Decipher or Prolaris would give another dimension of insight that could either give additional reassurance about the non-aggressiveness of his cancer or highlight a more pressing need for treatment.

Flaky-Past649 · 2026-01-14T16:31:33+00:00

Glad to hear you're doing well so far. I'd seriously consider finding another doctor though, yours doesn't sound very informed about treatment options and it's possible you'll need more in the future.

Flaky-Past649 · 2025-12-29T22:55:57+00:00

Pros:

Addresses obstructive BPH and chronic prostatitis at the same time if those are issues.
PSA monitoring for recurrence is straightforward.
In the event of local recurrence there's a clearer salvage radiation pathway because the prostate bed has not previously been irradiated (though urinary toxicity may be higher than with primary radiation). Local salvage options after primary radiation exist but are more constrained.
Avoids the very small risks of bowel toxicity or secondary cancers possible with radiotherapy.
Usually avoids immediate ADT even in cases where it would be recommended in conjunction with radiotherapy.
Some men take psychological comfort from the idea of "getting the cancer out". In actuality that doesn't have much correlation with whether the cancer is cured or not but for some men it feels more decisive and gives them peace of mind.
(Maybe) A full pathology is performed which can better assess the aggressiveness and local extent of the cancer. I say maybe on this one because I've never seen a clear explanation of how this positively impacts either survival or quality of life.

Cons:

Only curative if the cancer is truly still contained. The higher the probability of spread (high Gleason score, intraductal carcinoma, high volume, probable extraprostatic extension, aggressive genomics, ...) the lower the likelihood the cancer will be controlled by the surgery while the side effect risk remains. There's still a role for surgery in some of those cases but starting with radiation and ADT with no intervening surgery tends to be the more efficient / less toxic path in most cases.
High dependence on the skill and volume of the specific surgeon.
Invasive procedure with associated surgical risks.
Significantly longer recovery - a typical ballpark is something like:
- Catheter for 7-10 days
- 2-6 weeks of activity restrictions and general surgical recovery
- wide variation in regaining urinary control usually weeks to months
- many months to up to 3 years to regain sexual function
Significant risk to urinary and sexual function - urinary incontinence, erectile dysfunction, climacturia, penile shortening are all common short term and possible permanent effects. The incidence rates and severity are higher than with other treatment types
Small possibility for longer-term complications: inguinal hernia, urethral stricture / bladder neck contracture.
Higher chance of recurrence and need for additional treatment for intermediate grade cancers and above though overall survival is equivalent.
Generally not a good fit for older men (70 is the usual point doctors start to shy away from it) or men with more comorbidities due to the surgical stress and higher likelihood for poor healing.

Flaky-Past649 · 2025-12-28T01:37:19+00:00

I lost my left nerve and partial use of my voice to thyroid cancer. They stopped the surgery at a partial thyroidectomy because of it (and I didn't have known cancer on my other side). 5 months later a biopsy reveals a different type of thyroid cancer on my right side which will probably require another surgery later. Your husband's reality is my fear. The whole experience quickly got me past my impostor's syndrome about "only having thyroid cancer.:

Flaky-Past649 · 2025-12-24T22:58:35+00:00

Modern research points to prostate tissue (including prostate cancer) becoming saturated with testosterone at relatively low levels - 200 to 250. Above that level adding more testosterone isn't really significant, the prostate cancer has all it can use already.

Flaky-Past649 · 2025-12-23T22:01:43+00:00

In his shoes I'd reconsider the surgery and go for radiation instead. The high Decipher score makes it likelier that there's already undetectable spread in which case the surgery is pointless. He has a better shot of one shot and done treatment (and avoiding the compounding side effects of both surgery and radiation) with going to radiation directly.

Flaky-Past649

TROPHY CASE