Gleason 6 Decipher 0.64. Photon, proton, AS, TULSA?

Hey, @pdcar4756
thanks for the reply..... I understand your reasoning for Tulsa, I think my tumor location is good for Focal One or Sonablate. Otherwise it looks like our numbers are similar.

Can we continue to talk ? Hope you are doing well after your treatment. Please give us an update on your story if you are up to it.

@robertov
You have not had any treatment yet?

If you have had a Gleason 8 it means you had biopsies done. Those same biopsies can be used to do a Decipher test. You do not need to undergo another biopsy. Those samples are stored for futher testing, etc.

My biopsy was done and got my Gleason Score of 7. I then met with R/O. It was at that time my R/O suggested the Decipher and he ordered it using the same biopsy samples taken with my original biopsies.

Some times not enough is there, or an issues exist and need to do another biopsy for Decipher but I think that is rare and would be the only reason to have to do another biopsy.

My Gleason 7 was first given an intermediate risk level. When I had the Decipher done it came back low risk. I am not familiar with being classified as favorable or unfavorable so can't answer that question.

Very good your PMSA came back clear. Which radiation treatment did you decide on. Where you offered photon or proton radiation and the pros and cons of each. Which dose was recommended and were you given option of high dose or low dose and pros and cons of each?

I think I misunderstood that you had a RP and were asking about Decipher test being done after RP. I think most posters will agree that the Decipher test is very valuable for not only you but your R/O or urologist. It gives a more precise diagnosis of your cancer being low risk, intermediate or high.

In cases where has already metastasized outside prostate it would be at high level risk and Decipher would not be applicable. But not a R/O or urologist just giving my experience with the test and benefits.

Thanks jc76, I thought only photos were left. I’ll immediately call for a decipher test. The only treatment is that I was put on Orgovyx because I was leaving for a few months, with treatment to follow on my return.
Gleason 7 can be 3+4 or 4+3. The first number says what the predominant cancer cells look like, the 2nd is the 2nd most common. A 3+4 says most cancer cells look like normal prostate cells and is considered “intermediate favorable” (Grade group 2). A 4+3, says the predominant cancer cells are more aggressive and is considered “intermediate unfavorable” (Grade group 3).
Note I’m parroting what I read.

I ruled out surgery (personal decision). My 1st RO said IMRT. He believes he can cure me. On my 2nd opinion I was offered Proton Beam either 5 fractions or 28 fractions. The RO suggested 5 fractions would be fine.

The pros/cons of both is what I am trying to discern. It just seems sensible that protons with a lower energy profile going in and then stopping at the cancer would be a good choice. But how do they know exactly?
It also seems sensible that lower doses should do less damages, although studies say that yes, but you recover quickly from the high doses.
Honestly I’m wavering. The Protons are offered at a CofE 3 hrs away. The IMRT is 5 minutes from my house and claims to have more modern equipment than the CofE.
Have read/seen Canadian and US conferences and studies but am leaning heavily on hearing from others here. Phil has been helpful, Marc and Think-Feynman have really been helpful.
There you have the whole store 🙂

@robertov
With so much information out there and getting different perspectives it can be hard. My first consultation was at Mayo Jacksonville and could only offer photon. My Mayo PCP asked me to consider getting a second opinion at UFHPTI which has been doing proton radiation treatments for almost 20 years.

PCP was at Mayo had been doing a lot of research on prostate treaments so he could be knowledable recommend to his patients. I decided on proton thinking if I could do anything to help lesson the damage to surrounding organs and tissues (proton) I was going to do it. My PCP concurred best decision for me.

There has been a lot of research on photon and proton radiation. UFHPTI was given a 25 milliion dollar federal grant to study this long term. I am part of that research program.

Photon radiation treatmens have been advanced and are excellent. The success rate for both radiation treatments are bascially the same.

My UFHPTI R/O did not like to do the high dose saying his research was showing increased degree of side affects. My Mayo PCP said the same with his research. It make sense since higher dosage more damage but then it gets over quicker and healing process would start sooner.

I got 30 rounds of proton radation that was given to me over a 7 week period. UFHPTI went through a complete upgrade of all there gantries and equipment. It was like going to star wars. I can say they are outstanding professionals, courtesy, and the staff is great.

They offer a great information packet free for asking. It contains tons of research on photon and proton radiation, two books you see mentioned (one is the Walsh Book), and thier complete treatments plans. Absolutely no pressure to come there. They are all State employees and are salaried.

They get so many referrals from other medical facilities (Mayo Jacksonville is one) especially for children when very specific radation area must be treated. One side of the complex is for children only with great rooms for them to play, recover and wait.

Everyone is going to be different in how the respond to radiation. Some will have minor side affects and others will have significant. Pros and cons. It is the long term damage done to other tissues and organs that is the difference between the two. With proton it is not going to continue through body like photon. Some of long term studies will show if there is significant risk of additional cancers and damage from side affects of photon versus proton.

My Mayo R/O, UFHPTI R/O and my Mayo PCP that the success rate of both are the same.

Yes, we can continue to talk if you wish. I am doing well following my treatment. I'm only about 7 months out from when I was treated. My PSA has remained stable at 1.3 for both 3 month and 6 month tests. My first MRI showed nothing of consequence. I still believe my body is healing from having the trauma of half of my prostate ablated. Doctor said it could take up to 18 months for all of the ablated necrotic tissue to be processed by my body. I'll be under the watchful eyes of Mayo Clinic for upwards of 2 more years. So I am in good hands as I see it. Given half of my 100cc prostate has been ablated, my urinary function has drastically improved. My urine stream is great. I have no incontinence or loss of sexual function. This procedure for my situation was what I believe to be the best option to balance quality of life with efficacy of treatment. My only concern is a high Decipher score and the risk that it may present for recurrence. My mental mindset is...........it will not come back. I'm also watching my diet more, exercising more, staying physically active, and supplementing with Vitamin D, ad daily multivitamin, and Omega 3 supplements. I've also nearly eliminated alcohol from my diet, but for a beer or glass of wine now and then. I still have some pelvic floor discomfort. I don't know if that is from the procedure or from the fact that I had chronic prostatitis prior to all of this. Since I still have a functioning prostate, I'm thinking I might still have the prostatitis symptoms. So maybe this is just my new normal. It seems to be slowly getting better. I'll see how I am by my next visit to Mayo in October. Best to you as well.

You don't need another biopsy. They don't dispose of the samples for a number 9of years.

One other point to add in terms of radiation. My salvage protocol traditionally called for 39 IMRT sessions. However, research showed equal results with 25 sessions at higher doses and SE’s equal for both groups after 6 months.
So perhaps a bit more urinary/bowel in the 25 session cohort early on, but then dissipating and being equal to those men in the 39 cohort - who also had symptoms BTW.
My SE’s were minimal - 2 weeks of mild diarrhea and actually, improved urinary function.
So your SE’s from 5 treatments, at higher doses than IMRT - even if it’s proton - are probably going to be greater but it is impossible to know how much greater or if you’ll even have them at all.
Phil

Thanks Phil, that is very helpful and I’m begging to hone in on my solution. I’m thinking with my numbers, the 5=fraction Proton may work out better. I want to make sure that they have some image guidance - Mayo has one integrated CT and is converting another to it. Stands to reason they think it works better.

My IMRT RO seemed to imply the degree of freedom is less with Protons machines. Will check that out next.
Roberto

Proton radiation at Loma Linda Hospital in 2010. Loma Linda was a pioneer in proton radiation for children with brain cancer. Proton is precise and low risk. Then commenced with proton radiation for prostate cancer commenced sometime late 1990's. I had 2.5 months of weekday gantry visits with a half-body case. Gleason 3 plus 3 with slow growth prostate cancer.
had absolutely no side effects; in fact, played racquetball most days. Bottom line: for men with the option of proton radiation, please consider the option. Don't depend on one recommendation, but do your homework and ask any and all questions. EVERY PROSTATE CANCER CASE SEEMS DIFFERENT IN INTENSITY, GLEASON SCORE, AND LOCATION OF THE CANCER.

@westernflyer
Yes, I have read about Loma Linda. It was a pioneer in proton radiation.

I think I have mentioned several times seeing so many children at UFHPTI. They get referred there exactly what you posted. Proton radiation is precise, can be stopped at where you want to end treatment and not continue through body.

I agree with you on exploring the option if you have that option and second opinions if any doubt at all about what to do that is best for you.