Not that you would want to but if you could do it all over again?

Hmm, what would I do different? I’ve written elsewhere about my ‘journey’. Lots of serendipity. I think I may have bypassed a normal meetup conversation on all the modalities of treatment. Before and after my Mayo fusion guided biopsy I asked about freezing ablation treatment (experimental in 2020). I was ‘accepted’ but opted out when I heard the reoccurrence rate. I opted into PBT at Mayo Rochester which was doing (for my situation) 5 treatments over two weeks (prelims the week before.)

Probably the thing that I wish I had known was how to counter the side effects of my 4 month ADT shot. (Remember, about an equal amount of time to have it leave the body). Things like more focused regular strengthening exercises, maybe something else for low spirits, and possibly a routine to maintain penis size. Some of these are mentioned by others who write in this prostate cancer forum. Also several pretty good videos available through the prostate cancer research institute http://www.pcri.org (video’s on YouTube) talking about this.

Also, I didn’t know about the differences in the number of PBT treatments at different sites. Mayo Rochester was using the five treatments over two weeks protocol. I almost opted into Mayo Scottsdale (seemed like a more ‘fun’ place in January than Mayo Rochester.) I didn’t know that, at that time, that MScottsdale was using the ~25 treatments/five weeks. As it happened I finished my treatments in early Feb 2020, probably just before there was a Covid shutdown. Who knows what would have happened if I started five weeks of treamment at Scottsdale in early Feb 2020.

So all of us on this journey have made decisions based on the knowledge that we have at that time. It’s not a bad thing to do lots of asking, try to closely examine our ‘fears’ and assumptions and to proceed cautiously. It can be tricky to ask medical professionals about the side effects and efficacy of their suggested treatment. American medicine makes that more complicated when some doctors make more money delivering their ‘preferred’ method of treatment.

I think there was a joke about the patient asking the doctor about the impacts of treatment.
Patient: “After this treatment will I be able to play concert quality piano?”
Doctor: “Yes”
Patient: “After this treatment will I be able to run a five minute mile?”
Doctor: “Yes”
Patient: “Well then I definitely want this treatment because I can’t do those things now, so it must be quite miraculous. “

That is what makes prostate cancer such an interesting area of discussion. The treatment road is paved with many forks.

ozelli, this is such a great question for those of us still deciding. Thank you.

Your situation might be different, but while stage 4 prostate cancer is "incurable," if the number of bone metastases is small (e.g. < 5) and your health is reasonably good, your oncology team might consider it to be "oligometastatic" and still treat it with curative *intent*. At least one of the doctors who pioneered that approach practices at the Mayo Clinic, although it is quite widespread now (including at my local Cancer Centre here in Canada).

You won't live forever (who does?), but in a situation like that you might still get "lots of years", as the lead of my team told me early on. If you don't have too many metastases, it's worth asking your team what different treatment options are available. Note that "curative intent" means stronger treatments with more side-effects, so it comes with a physical and emotional price tag.

So much THIS!!!

I'm getting sick and tired of docs not recommending what they know is appropriate testing/treatment because they also know the insurance company is either not going to cover it or fight them on it. (certainly not limited to this issue but happened once, see below)

This is what happened with my PET scan. "You should have this but, oh well, your insurance won't cover it".

I went deep in to pay for it, then fought the insurance company for about 6 mos and they finally paid up.

I can site examples of incredibly inexpensive things in this realm as well. It's nuts. How about you tell me what is appropriate and I'll decide if it's worth the fight? or the cost?

Ditto ! My dumb urologist stopped doing psa blood tests on this old man. Primary doc said blood numbers are a little off, see a hematologist! Did. Psa had shot up to 985 and a radiologic bone scan showed metastatic prostate bone cancer. Incurable. Am on hormone suppressants. Putting my affairs in order. GET THE DAMN psa TEST REGARDLESS OF WHAT THE numb-numb government agencies and slip-along docs tell you.!!! It's YOUR life!

-I should add that I would watch Dr. Eugene Kwon’s prostate cancer videos on YouTube immediately. Very helpful in evaluating your options and approaches.

-Would have gone to Mayo Rochester/Dr. Kwon first.
-Wasted 5 months going to major university system (while I had Gleason 9 aggressive PC) only to be told the likelihood of cure was “very low”. Told chemo wasn’t effective.
-Liked/would repeat the aggressive approach by Mayo to eliminate cancer and try to keep clear for 10+ years. By the way, they did include same Lupron dosages and added chemo (6 Docetaxel sessions at MN Oncology-Dr. Vladimir Hujec) right away, followed quickly thereafter by 20 fractions of radiation therapy (atMayo Northfield). I am now clear (previously stage 4) and have been clear for 11 months.
-would do again my cold cap (Paxman System) for chemo. I had no hair loss that I could tell. I would note that I almost discontinued due to severe brain freeze. However an chemo nurse said that it gets easier after the first 20-30 minutes. She was right. It was tolerable after that first 20-30 minutes.
-Do again: ice trays to cool hands and feet during chemo. I had mo neuropathy. (Had to request this at chemo office.
-I would read Jane McLelland’s book How to Starve Cancer immediately.

In terms of what I would have done differently, I would have done an MRI Fusion biopsy, not because the biopsy was not done right but better imaging helps with the process and reduces errors.

I would have looked at a couple of more urologist choices. Mine had 25 years of experience but as I learned during "my research stage", there are inherent bias's in the medical field and doctors are not infallible.

Although, I tracked my PSA for 12 years in a chart, doctors have varying opinions. Different doctors can react to "high or low markers" in your blood tests, in general. Now I track a little bit more than in the past and make sure that I have more of a discussion with my PCP of anything that shows up out of sync as well as additional research to stay informed on the issues associated with that discussion.

Great explanation of the process. Thank you.