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

Hi jc76,

By five high-dose, not sure what you’re mean. I’m familiar with HDR (high dose rate) brachetherapy—is that what you’re referring to?

Also, I know about spacers like SpaceOAR.. But I hadn’t heard of balloons. Is that another method to protect the bowel from radiation burns?

jamesharriosn, The high dose I am referring to is the 5 dose a lot of facilities are using instead of the lower dose long term ones. The lower dose ones can range from 20-40 over 5,6,8, weeks or even higher depending on facility, your treatment and your oncologist/radiologist. Mine was 30 treatments over 6 weeks.

Mayo Phoenix and Mayo Rochester have been providing (depends if qualify for them) the high dose 5 treatments. There is 3 treatments first week and week two, 2. It is higher dose but a lot less time and days to complete your treatments espeically if you are traveling to the provider. I am not sure if there is high dose 5 treatments using photon but know they are doing them with proton. This high dose 5 treatments is what I would have preferred to do but when I was making decision there was not much information on the high dose. It has now moved to I think from what I am reading almost to the standard.

Space/Oar is a gel that hardens after being put in (and is left) and is placed at rectum to move and help protect it from radiation. If you cannot have the Space/Oar, or don't want it, the radiation techs insert a baloon in rectum before each radiation treatment. It is kind of hard to describe. It is not the type balloon you blow up. It kind of looks like a very large wide pencil with fluid in it.

The balloon is yes a method to HELP protect rectum from radiation. Proton radiation ends at target but like my treatments they did margins. Thus you can have some radiation exposure to rectum. Anything you and radiologist can do to help lesson radiation damage to other organs and tissues is worth it in my opinion.

Drinking water prior to radiation. To help move bladder away from prostrate and radiation a common technique is drinking water prior to treatments. This suppose to help move bladder away from prostrate.

I did the water (16 ounces) each time. This was determined at my Simulation test where they look (xrays and CTs) at your bladder, rectum, and prostrate to determing how much water to drink and can look at Space/Oar, or the balloon, and the Markers. The simulation helps them make a "BED" that you lay on each time to get you in the position for radiation treatments. They also use low dose xrays each time to see your "Markers" and ensure your prostrate has not moved (normal for it to) each time prior to radiation treatments. The tech will re-position the table, or make sure you are in correct position in bed, to correct anything out of tolerances.

Hope this helped.

Great explanation of the process. Thank you.

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.

-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.

-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.

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!

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?

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.

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