Please welcome new member Wall Guy

Wall Guy, At the time of my diagnosis, I found the very same thing in Pittsburgh. Although they had the equipment they didn’t treat PCa with SBRT. I found out that a lot more goes into it then simply having the ‘machine’. The RO’s, and the entire staff have to be trained in using that equipment for PCa. I guess a lot more goes into the details than we understand. I would recommend finding a center where SBRT is used for PCa. My entire treatment took a total of eight visits including my initial evaluation. I found it much more convenient and time saving than 45 visits typical of IGRT. Terry

Post Edited (Terry's Cellar) : 9/26/2022 9:57:06 AM (GMT-7)

It has been a while since posting. Making the decision is a tough one. I got the Luperon shot this morning, so heading down the radiation route (still have maybe a month before radiation treatments, so still open to surgery).

My gut tells me "surgery", just get the darn thing out and be done with it, live with the incontenence for a while until things heal. After talking with both the Urologist and the RO, both methods yield the same results, it depends on what suits my life style.

I met with Mayo Clinic two weeks ago thinking that maybe SBRT would be the way to go, 5 treatments and I'm done. The read the MRI reports themselves and verifiied the vesicle intrusion, moving me up a "high risk" category (bummer). Their recommendation was 18 mo of ADT with 20 radiation treatments. The RO locally said 6 mo. of ADT with 5 wks of radiation treatments. I definitely liked the approach from Mayo, they looked at everything before making a recommendation. However their closest center is 35 miles away (so a long drive for 20 sessions). The MRO center here is 4 miles away, 10 minutes even on a snowy day.

So what were my choices:
1. Surgery
a. health impact from surgery (possible infection, heart attack, etc.)
b. incontence for 1 to 3 months (maybe longer depending on the surgon).
c. ER for sometime, but at my age not a big deal
d. horror stories
i. they cut something they shouldn't have
ii. incontence does not go away. The maybe more surgery to try and fix that, or pads for the rest of my life.
2. Radiation
a. 6 months to 18 months of Luperon
i. lack of motivation
ii. loss of mucle
iii. weight gain
Iv. hot flashes
b. radiation "burns" something it should not have
i. uranary problems
ii. bladder issues
iii. bowel issues

Just no "good" way out of this problem. As the surgen said "you have cancer". I guess I will be fighting this for the rest of my life. Hopefully the PSA stays low and we are only checking it every 6 months to a year, a good thing. The Urologist did a good job of getting the testing done (PSA test, MRI to confirm, biopsy to confirm cancer, PSMA Scan to be sure no metastatic cancer). I think we know all the answers.

I am fortunate that I live in the Twin Cities. There are A LOT of resources here with the University of Minnesota, Mayo Clinic 75 miles away, a lot of hospitals and many radiation treatment centers. I grew up in Update New York (Canton) and when my father had heart problems or my mother had an embolism in the brain, we had a local hospital but no specialists in those areas. (When the embolism created problems for my mother, they had no idea locally. She was transfered to Syracuse and the intern on duty said she probably not survive the night. The next morning she was setting up eating eggs!!! What the heck. The surgeon came in and identified the problem immediately, they did surgery a week later and she lived on into her 80s, 30 years) It was a 2.5 hour drive to Syracuse of Burlington for treatment. I can see if I lived there surgery probably would have been the option versis driving a long distance to a cance treatment center.

I'll let you know how this goes. My worry yesterday was this luperon was going to be "trip from hell" for the next 6 to 18 month. The surgion said in his experience every individual is different, but nothing too bad. I hope he is right. Everyone said stay active, some mornings with Luperon you get up and don't feel like doing anything. He said keep with a routine. I have run two half marathons the last two years and set up for two more next year (June in the Teatons). That should keep me in shape. I came in 5th in Lake Powel last year, don't know where I came in Maine this year. I didn't train hard enough with this distracting me, so I should have done better. It was a beautiful course with a lot of hills.

Wall Guy, Given your diagnosis I believe you’re making a good treatment choice. Had you chosen surgery as a monotherapy; it’s very likely that the seminal vesicle invasion (SVI) would have resulted in later treatment with radiation and ADT leaving you with a higher risk of long term treatment side effects. This cancer that none of us wants is so much easier to treat while it’s fully contained. The SVI unfortunately suggests a higher probability of lymph node involvement and rogue cells may have escaped. The ADT should put an immediate stop on progression and the radiation treatment offers the best chance for a cure. The longer course of the RT allows them to treat a broader field without damage to important organs in the area than SBRT might offer.

In the long run we hope this is just a bump in the road with ‘June in the Teatons’ your goal for the future. Good luck and keep running. Terry

As I keep thinking about this, my Urologist said surgery and radiation were a wash, they both worked. Ok, given that and everything else I have read, if the Urologist is concerned about getting the margins why not suggest radiation as the first line of treatment? Sure it is hard to do surgery after radiation due to scare tissue but it seems that sure beats surgery and ART for eight weeks if you don't get the margins.

One of my RO sort of laid out the facts as did the book by Dr. Welsh, Guide to Surviving Prostate Cancer it is all about revenue. 30 radiation treatments make more money than 20 treatments, surgery makes more money for the hospitals than RT. Sure they want to save your life, but they want to make money doing it.

I think I am up to$29,000 already and no treatments done yet. This is an expensive venture. Thank goodness for Medicare.

I seem to recall that my hot flashes started a week or two in. But not everyone gets them...or for some folks they're not too bad. Glad you're hitting the gym as that can be very helpful in fighting off any fatigue or "creakiness," which is another way I characterized how I felt during that period. Good luck to you!

Interesting the RO suggested surgery. All of my ROs suggested radiation, especially with the vesicle intrusion. I think with surgery I would have need radiation afterward anyway. My RO now likes 44 treatments, but with the good results of shorter treatments he is suggesting 28. Mayo suggested 20, but he feels with the higher power there is more of a chance of damage. Mayo wants to get patients out faster so they go with shorter treatments

Mago suggest 18 months of ADT with their reading of the MRI, where my first RO suggested 6 month. the current RO wants to get any microcells so he is sticking with Mayo's suggestion.

thankyou. The RA center is next door to the YMCA so my plan is to combine the effort, cure the cancer and reduce muscle loss.

Taylor, why did your RO suggest surgery? All of mine were good with RA. With my SVI it seemed like the margins would not have been there, so radiation followup after the surgery was almost a given. I figured both (surgery or radiation) had the some result at 10 years so for me just do the one treatment. Mayo was good with RA and 18 mo of ADT, (I had hoped for 5 treatments of SBRT.) After reviewing my MRI slides the moved me to high risk, that is why they recommended 18 mo of ADT and SBRT was off the table. They wanted more coverage the IMRT offered and getting the lymph nodes.