My Story

Jason, My stats would suggest I was an ideal candidate for active surveillance; however, recent joint replacements due to arthritis had me very concerned about additional biopsy infection risks. I ruled out prostatectomy quickly for having high risk for urinary and sexual function. Any of the radiation treatments offered much lower risks than surgery for my situation. It was on this forum that I found SBRT. Unfortunately none of the hospitals in Western PA offered for PCa at the time of my diagnosis. Cleveland Clinic (CCI) was only about a two hour drive from our home and they had considerable experience with SBRT so we went there to see if I was a good candidate.

I took my biopsy slides to CCI for evaluation and the thoroughness of that first trip made my wife (an RN) and myself completely comfortable choosing SBRT following this first visit. On the second visit I had three metal markers placed in my prostate (no big deal and local anesthesia). This procedure was similar to a biopsy except markers are left instead of samples taken. These small precious metal beads/markers act as a reference point and are key to precisely guiding the radiation later with sub millimeter accuracy. The third visit was called ‘simulation’. During the simulation visit they place you on a radiation table, give you three small freckle size tattoos, build a body cast under you to very accurately identify your exact position for future actual radiation treatments and do extensive imaging of all the organs near the expected radiation area and of course use the metal markers placed earlier for guidance. This third visit was the longest taking a couple hours. Following this visit your RA oncologist and his team creates the unique radiation plan for your situation. The fourth through eighth visits were the actual radiation treatments and were very short. At your scheduled time they pull out your unique body cast and you lay very comfortably on the table using that cast. They adjust the table using the tattoos to bring you very closely to your simulation position. A quick imaging identifies the exact location of your metal markers and precisely where your prostate is and the table adjust again for height, pitch, etc. They cover you with a warm blanket, give you a headset and ask you what kind of music you like. Two Country Western songs later you’re done. During the radiation a large mechanical beam travels 360 degrees around the table you are positioned on stopping every 60 degrees to image you and your markers, adjust the table and precisely deliver a dose of radiation to the exact location. The prostate itself as well as the area around the prostate receives varying amounts of radiation according to the plan developed by the RA and his team. High technology for sure.

The radiation days were M, W, F, M, F and five total. I was told to arrive with a full bladder and an empty bowel. For myself those simple instructions were easy since the time of day for treatment was always the same. From initial evaluation to end we had eight actual visits. Followup was virtual with CCI and very easy as well.

A simply amazing experience. Following the third fraction I did experience some mild burning with urination. Same during sex. Yes I was able to maintain my normal life. The burning resolved on it’s own in a couple weeks. My orgasm is significantly reduced in seminal fluid volume but feels exactly the same as before treatment. I had no bowel issues prior to, during, or following treatment. I did not have SpaceOAR and at the time of my treatment CCI used an endorectal balloon for simulation and at each treatment.

Normal beam radiation (EBRT) would have taken 42 radiation days (fractions). Since insurance typically pays based on the number of fractions we actually saved our insurance about 10K with SBRT vs. EBRT. We treated our treatments to CCI as an adventure and explored new lunch places with each visit.

A good website to explore SBRT is Sloan Kettering. I believe MSK calls it precise. Do a search for precise MSK. The best treatment choice is always an informed one. I’m glad to see you doing your research and I’d be glad to help with any questions you may have. I’ll always be grateful to those that helped me. Terry

Post Edited (Terry's Cellar) : 6/5/2024 4:29:56 PM (GMT-8)

Jason, We each have unique circumstances that need to be applied to our treatment choice. One size fits no one regarding treatment choice in PCa. It pays to do your research and select the best treatment for your particular situation. One other suggestion is to seek out the very best practitioner and team for the treatment you select. You want that first treatment choice to offer the very best chance for a cure and with side effect risks that are acceptable. The best can make a big difference in outcome. Glad to see you making an informed decision. Keep us informed as we all learn from one another’s experiences. Terry

halbert said...
s.

It's hard to explain, but it's one of those things that most of us have experienced, and it comes from doing our diligence, learning about the options, seeking the experts, and then relaxing into the decision and being ready to move forward.

Amen, bro.

Jim

I just got back from seeing a radiation oncologist with Lahey. I think at my stage of favorable intermediate grade prostate cancer, I've now come to accept that there is going to be a lot of ambiguity. I have no regrets about following the advice of several forum members and getting opinions from multiple radiation oncologists. Having said that, my visit today only seems to muddy the waters some more for me.

The RO actually recommended surgery rather than radiation given my age of 52 and being very fit. I have to admire the candor but it, of course, doesn't make my decision making process any easier. Like the first RO, he was concerned about the area where I had the rectal fistula and subsequent anal abscesses. He was felt it was enough of a complication that he ruled out SBRT and brachytherapy. I would not be a candidate for the Space Oar gel because it could fill that area where I've had the abscesses and that could be a problem. He recommended the IMRT but in its latest iteration which only involves 20 treatments at a higher intensity than the traditional longer period. On the plus side, I could have the treatments at the facility only 10 minutes away from my house.

He confirmed I would not need hormonal therapy at my current stage but said that would change if I progressed to 4 + 3. He didn't right out come and say it but the implication was that if I want to avoid hormones, AS may be limited for me. They could proceed with the 20 treatment radiation by late summer without needing additional testing.

He mentioned the traditional thought of having radiation as a backup to surgery as part of the reason he recommends surgery. He went through the comparative analysis of symptoms between the two therapies saying that my odds of not having erectile problems are about 10% better with radiation. Urinary issues would be more frequency and urgency connected to radiation. On a positive note, he gave odds of about 80-85% that I would at least make it 10 years with no cancer reoccurrence with radiation.

I still have my video appointment with the other facility on 6/14/24. That doctor will be advising about brachytherapy but now I'm really wondering if that would be safe for me regardless of what she says.

The other component is that I have a PSA test scheduled for 6/13/24. Where will it be in comparison to my last one at 5.1...? If it's unchanged do I continue AS for at least another six months knowing that I would need another MRI and biopsy at that time should I want to pursue therapy then?

I'm going to ruminate on things and weigh the PSA results in my calculus.

Jason - Definitely go ahead with the next visit and see happens. Too much information is a good and bad thing, just depends on ability to reach a mental conclusion that you can live with. I went round and round with doing Adjuvant Radiation and finally decided to go with survival odds and screw the side effect possibility. Something has to trump something else to arrive at a solution.

The logic of surgery for a young man has been around for a long time and radiation oncologists will recommend it from time to time. The long term effects of radiation are always a question and unknown since PCa is typically an older man's treatment. You could live 40 more years and the database of those men would be based on those treated with 40 year old technology so who knows if it would mean anything.

It will start making sense next week and I agree with halbert about having discussion with spouse and any family that could help with the process. I took my wife to a few of the meetings and it really helped.

Thanks for the responses and those are good questions to ask myself. I did feel very comfortable with the RO I saw today. I appreciated his honesty, the time he took, and how thorough he was. I was basically the one who ended the appointment. The Mass General and Lahey facilities are both so close by that either would be very convenient to do the more traditional radiation. That's obviously not the most important factor but he showed me enough for me to accept that my previous anal surgery could be a problem. I could see on the scans he showed me where the indentation is in that area so I could actually follow along with his reasoning that SBRT and brachytherapy are probably not my best choices.

In addition to the positive comments about radiation here, I've been watching a lot of Dr. Scholz's videos connected with the Prostate Cancer Research Institute. He is very much in favor of radiation over surgery given the advances of the last 15 years. He seems very knowledgeable without an ax to grind for either treatment. Have any here looked into this resource? Is he considered a reliable expert?

Again, I'll need the PSA results later this week but my gut is starting to tell me that I may not be cut out for much more AS. I saw my father die a horrible death from prostate cancer. That leaves a mark and the last thing I want is to leave it too long and have more problems. I do understand about overtreatment but peace of mind is worth something as well.

jason,

In your situation (G7, rising PSA) you are definitely NOT in the potential overtreatment category. Overtreatment, which was really a thing some years ago, is much less common than it was 10-20 years ago.

I also hear you about your father's history impacting your own decision process--it did mine too.

There was a time, not long ago, where someone on AS that moved from G6 to G7 was automatically off AS and in the aggressive treatment track, so that's something as well.

After you have this video appointment, I suspect it's time to make a decision and then get it set up--whatever that decision is. What I know is this: when I made the decision, and picked up the phone to set the schedule, I actually relaxed and got ready.

JasonB176 said...


In addition to the positive comments about radiation here, I've been watching a lot of Dr. Scholz's videos connected with the Prostate Cancer Research Institute. He is very much in favor of radiation over surgery given the advances of the last 15 years. He seems very knowledgeable without an ax to grind for either treatment. Have any here looked into this resource? Is he considered a reliable expert?

.

As noted, Dr. Scholz has a clear bias for radiation over surgery. Having said that, many of our members over the years have been successfully treated by his practice (Drs. Scholz and Lam). I have read all of his books and seen most of his videos. If I needed a top prostate oncologist he would clearly be high on my list even though he is about 3000 miles away.

Jim

I just got my PSA results back. My PSA dropped from 5.1 to 3.8!!!!!

December 2021 - 5.1
April 2022 - 3.5
November 2022 - 3.6
November 2023 - 4.9
December 2023 - 5.1
June 2024 - 3.8

I am taking a mushroom supplement that is supposed to be anti-cancer but beyond that, nothing else has changed. The tangled mess just got messier. I'm going to at least consider doing another 6 months of AS and getting a repeat MRI and biopsy at that time.

I still have my video appt for tomorrow with the radiation oncologist specializing in brachytherapy. I'm going to take some time to just think.

I might add....

https://www.medicalnewstoday.com/articles/326285

https://www.endocrine.org/news-and-advocacy/news-room/featured-science-from-endo-2021/white-button-mushrooms-could-slow-progression-of-prostate-cancer

The problem is whether things you take just depress PSA and otherwise hide the cancer via lowered PSA test results. Some common prostate problems are treated with drugs that depress PSA (reduce by 50%) but do not materially change the cancer situation so adjustments to reported PSA values have to be considered (3=>6)

Diet and supplements may be very helpful if one does not have prostate cancer but once you have it, you may just slow it down for a while which might be good or bad depending on point of view. ADT would do a similar thing until the cancer mutates to resist it.

Google states that Saw Palmetto does not effect the PSA, unless it contains biotin.

Jason, I agree with all the other comments above regarding your PSA drop. As well as the comment about supplements not curing a cancer you already have.

With that said, knowing you have cancer, thats quite a drop, and pretty unusual in the presence of a positive cancer diagnosis.
Questions... Did you use the same lab? Was there anything you might have done the day before your last PSA that might have bumped it up, like sex, lifting weights, riding a bike?