My Story

I think you have got enough opinions from everyone, me included. All decisions are yours to make and being well informed is the first step.

I suggest that you review the Johns Hopkins AS guidelines I previously referenced as best as you can. Another biopsy is a great idea given the limitations of actually “hitting” the center of a small nasty lesion with any 12-13 needle samples. Lots of examples of misleading biopsy results causing later problems are common and some have been expresses. Good luck.

Thanks for the comments. I did review that AS guide again. I meet a lot of the criteria for AS but am certainly on the riskier end. I note that they recommend a follow-up biopsy about a year out from the first one. When I see my urologist on 8/2/24, I'll definitely be asking about this.

I left a message with PCRI and they already got back to me. They concurred about radiation being out. So it's all about surgery when I'm ready.

Oh well, I guess. I'm a surgery patient, treated at age 56, and I've done really well. I'd echo the other opinions, and find a well regarded surgeon who has done thousands of procedures. Ask them directly what their patient satisfaction reports are like in terms of ED and continence.

We're all individuals, and here is where the stats break down. IMO, it's best if your surgeon has done many robotic as well as conventional surgeries--because with broad experience comes better experience dealing with the unusual.

If you're going surgery, make sure (a) to get your core and pelvic girdle in as fit a condition as possible, (b) learn how to do kegal exercises, and start doing them now. Every day. (c) ask prospective surgeons about when they start penile rehab, and what they proactively do to make good recovery more likely.

From that, plan on a month of recovery time, at minimum. You'll likely have a minimum weight limit of lifting of 10-15 lbs for a few weeks, and gradual increases. It takes time--it took me several months to really start feeling good.

Excellent, sounds like you are in good hands. Doctor's experience and reputation matters more than organization ratings. Many top tier places have lots of branches which ride on the flagship's reputation but are clinics like any other.

You can get into all the questions and details relating to surgery later when you have it scheduled. halbert gave you the general idea above but it will not seem real until you set the date and the countdown starts.

Jason, Sorry to hear your choice of treatment is limited; however, you’ve done a great job of exploring your options. As others have pointed out, find a skilled surgeon and one you have confidence in. Best wishes…Terry

Indeed a good recliner after surgery like this will do wonders! If you dont have one, rent one for two weeks.

Jason, smart to start the kegels now

I understand you have a specific issue with the anal assesses. With that said, I will just say, I had pretty bad constipation after surgery, even with Dulcolax, which was recommended to me by the surgical team. On day 4 I took matters into my own hands, and asked my wife to go out and pick up a jar of Prune Juice. One glass and it was bombs away. Just something to keep in mind if you prefer a natural solution. Of course everyone is different.

I just had my follow-up appointment that I mentioned would be today. This was with my original urologist who has been following me for the last few years (see first post for full details).

To briefly recap, my prostate was biopsied in January 2024. One sample was 3 + 4 with 5% 4. One urologist recommended immediate surgery, the other strongly recommended AS. I fully explored the radiation option but unfortunately due to my previous rectal problems, multiple ROs recommended against that.

I didn't expect another DRE exam but apparently they're still important even after a positive diagnosis. Today's exam showed nothing new and he went so far as to say that it almost felt normal. It was his more experienced colleague who recommended AS and he generally backed up the plan. His only comment on the drop to 3.8 PSA was that it's important only in that there wasn't a significant jump from the 5.1.

He ordered the decipher genetic test which I still haven't done. He also ordered another MRI. My concern was that insurance will not cover a repeat MRI before a year's time (last one was in January) but he said that because I'm already diagnosed as a cancer patient, that shouldn't be a problem. He felt like a repeat biopsy is probably also in order but that we would wait to have the MRI results before deciding on that. He also felt that insurance would provide a PA for that despite it not having been a year since my last one.

I'm generally happy with the visit. I'm still wallowing around in that sea of uncertainty but am prepared to continue with the very active AS for the time being even if that means MRI/biopsies every 6 months. I think what helped was that he didn't say the 3 - 5 year timeframe that was mentioned to me had to be the limit. If this close monitoring doesn't show progression, I could carry on indefinitely with AS.

I pressed him about missing my opportunity to catch it all and also the added risk of not having radiation to fall back on but he was confident that with this level of vigilance, I would not miss that window. I still think there's some dice rolling going on but for now, I'm not scheduling surgery.

halbert said...
Jason, In reality, it sounds really good. Your PSA went down a bit. Having another MRI will provide some guidance, if something changed, it likely will show up there.

This is the whole deal about AS: watch for something to change, and if it does, do something. It's often been stated in here that some long term studies on AS indicate that there is statistically no difference in longevity between patients who could have done AS and did not, and those who did AS for a time before aggressive treatment.

That 'window' you speak of is still open. It may stay open for years.

I do feel better about proceeding with AS after this visit. Those studies have always impressed me but having my urologist confidently assure me that I should be fine with AS for the time being definitely eases my mind some. So, I will continue living in the "now" enjoying the life I have and cross the next bridge after my MRI results.

See my last post just above for the latest from last month. I had my follow-up MRI done this morning and the results have already come back. I'm cautiously optimistic that I not only can continue AS but hopefully will not need another biopsy at this time. I see my urologist in 6 days so will know definitively then what the recommendation is.

From the MRI report:
"Extraprostatic extension/ Neurovascular bundle: No evidence of
extraprostatic extension....

Seminal Vesicles: Normal bilaterally.

Rectum: Unremarkable, no involvement

Pelvic Sidewall: Unremarkable, no involvement

Lymphadenopathy: No significantly enlarged or abnormal appearing
iliac, obturator, or inguinal lymphadenopathy is identified

Osseous: No evidence of osseous metastasis is identified.

Other findings: None

IMPRESSION:
1. Stable PI-RADS 5 lesion in the right peripheral zone
posterolateral at midgland. No new suspicious lesions in the
prostate.
2. Mild BPH. Prostate volume is 50 cc.
3. Findings of prostatitis in the peripheral zone."



I, of course, expected the PI-RADS 5 lesion to still be there. It's not going to magically disappear despite my taking the Turkey Tail mushroom supplement BUT the fact that it says no new suspicious lesions and that it's described as stable would seem to indicate the cancer hasn't spread since January.

I'm really hoping I get a 6 month reprieve without having to do another biopsy. Am I hoping for too much...?!

My genetic test unfortunately was denied a prior authorization by Blue Cross.

Hi Jason, you should have been given a color Decipher report with the findings for your specific cancer. If you weren't given a copy of your Decipher report, you should request it from the doctor who ordered the test. It's an important document you should keep in your records.

To see a Sample Report, click on this link.
Then to download the appropriate report, click on the Leftmost: Decipher BIopsy, which is the test that was done on your biopsied tissue.

Your report will differ from the Sample Report as to the numbers, but the blue/orange/red scale on the left still applies: Decipher scores range from 0.0 to a maximum of 1.0, The high-risk (red) zone starts a score of 0.6 and goes up to 1.0. You mentioned that your score was 0.61, which as you can see is at the low end of the high-risk category. Each score corresponds to a 5- and 10-year risk of having metastatic disease. You can study your personal report for explanations of your numbers, but the bottom line, to the best of my knowledge, is that a guy who gets back a high Decipher score needs to come off AS and seek primary treatment in the coming weeks.

IMO, you should definitely appeal the insurance decision not to cover your test:your high-risk result attests to the test's necessity. If you should lose the appeal, contact the Decipher test maker, Veracyte--you may be able to work out a reduced fee (I was able to).

Until the advent of genomic testing, it was thought that there was a direct correspondence between Gleason score and tumor aggressiveness, or the propensity to metastasize. We now now that you can be low-, average-, or high risk for metastasis with any Gleason score. The only thing that changes are the percentages of men in any one category, which skews toward more men in the average- and high- risk groups as the Gleason score increases.

Unlike DNA testing, which tells you if you have genetic (familial) gene mutations that increase your risk of getting certain diseases/cancers, genomic tests like Decipher look at your specific cancer's RNA, so it's not telling you about conditions you may or may not get at some point, but rather about the cancer that you now have.

Keep in mind that primary treatment has the potential to put even high-risk cancer in the rear-view mirror. Obviously the chances of this go up considerably if the cancer is still prostate-confined at the time of primary treatment.

Djin