Considering Tulsa Pro or Proton radiation (full gland)
I was diagnosed with stage two prostate cancer a year ago. Biopsy showed 11 cores of 3+3 and one core of 3+4 )less than 5% of 4). Bilateral No perineural invasion . That biopsy was an ultrasound. Decipher of 0.32. So I went on Active surveillance.
I had a repeat biopsy This year.
It was an MRI guided biopsy (not sure why I didn’t get an MRI guided biopsy last year ??) and I had an additional core of 3+4 (35% of 4) and the urologist re-sampled one of the tumors and it came back 3+5 (but less than 5% of the 5). On this biopsy I also had perineural invasion. No cribaform. I am sending the 3+5=8 for another decipher test
I’m afraid that my cancer didn’t grow in that year, but it was due to the better sampling of the MRI guided biopsy.
PET scan showed no escape
ED an incontinence is very important to me.
I had a consult at a newer Tulsa pro site and they stated that since I needed a whole gland ablation that I was not an ideal candidate due to the possibility of recurrence in 2 to 3 years. I like the advantage of Tulsa pro gives with reduced side effects and the availability of further treatment, including another Tulsa Pro procedure or radiation.
I am considering getting a second opinion from the Texas Prostate Institute, which is a higher volume Tulsa Pro site
I am also considering proton radiation consults at the university of Cincinnati . (I think they use a Varian machine with gantry) at the University of Cincinnati. I am leaning towards the proton radiation and the 28 sessions to reduce effect on the rectum and bladder and other organs . I have severe diverticulosis and generate many polyps during each colonoscopy. The downside of radiation seems to be in 2 to 3 years some of the same side effects start to appear as surgery.
I just read about getting the Prostox test for sensitivity of radiation
My questions
1) is it worth it to get a second opinion from the Texas prostate Institute on full gland ablation by Tulsa pro or is it too risky?
2) I’m considering 28 sessions of proton therapy. What is your opinion of that for my cancer
3) and is it worthwhile for me to get the Prostox test for radiation sensitivity?
4) any other advice?
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@oldgreenpaint
Was this photon radiation treatments? SBRT 5 sessions or 28+?
Did you use the Space Oar gel
Did you investigate proton or doing the 28 sessions vs 5?
@clevelandguy Proton is a fantastic treatment, but it is still radiation and still has to hit the prostate/bladder junction.
And just like photon SBRT, it has to have a marginal diameter built in to be sure it is hitting all the prostate tissue (2-3mms or more).
So even accounting for the Bragg Peak, that peak will occur, unfortunately, in some undesired area due to the inherent anatomy.
Proton is great, but far from foolproof.
Phil
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Hug
1 ReactionHi,
Proton therapy is more targeted, resulting in less damage to surrounding healthy organs and tissue. This often causes fewer side effects, such as reduced fatigue or lower risk of gastrointestinal issues.
X-ray therapy is effective but can damage healthy tissues in the path of the beam. They are two very different types of external beams. Based on your comments on 2-3mm overlap, that why it is wise to use the spaceAOR gel as extra insurance in my humble non medical opinion. By using the gel and in the hands of an experienced technician the bladder damage should be minimal or non existent.
@jaygk I was offered 5 sessions of proton, and took it. I looked at a lot of radiation treatment modalities. The five were in two weeks. An M-W-F. then three days off followed by a Tuesday Thursday finish up. Saw the Radiation oncologist on Tuesday and they reviewed my urinary impact issues. One thing I did not do was access the Prostox test for sbrt radiation. I am not certain it would have applied to the proton format?
I had gotten complacent with what I viewed as steady state cancer while on active surveillance and had not kept up with advances in treatments the way I should have. Then the PC ramped up rapidly and I had to make decisions quickly, while undergoing back surgery. Where I live providers offer the photon sbrt 5 treatments spread over 5 weeks and I think that would have been a better fit for me.
Some people think the proton is the Magic Pill. I think both proton and photon are about equal in curative abilities. The Meridian MRI real time guided sbrt sounds good? But few facilities have that and for sure you want to go where the providers have great experience.
One other thought. Some people seem to think that if radiation is delivered On Target perfectly, then there will be no side effects. I can tell you from my experience that my prostate yelled just as loudly as my bladder did when radiated.
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Hug
1 Reaction@oldgreenpaint Yes, proton radiation can hit the bladder - if they do the (very complex) calculation wrong. Proton’s Bragg-Peak characteristics come into play with these treatments. This can be further minimized using a rectal spaced, but the Bragg-Peak is an inherent characteristic of protons that photons (X-rays) do not have.
Yes, radiation side-effects have a way of sometimes happening months or even years after treatment. Again, if they do it wrong and hit otherwise healthy nearby tissues and organs with radiation, there can be those late side-effects. But, what radiation doesn’t hit, it doesn’t damage.
I’m 5 years post-proton radiation treatments (28 sessions) and so far, nothing has gotten any worse than I had going into treatments.
@brianjarvis
Brian. I have an appointment with Dr Struve at UC in 2 weeks to discuss the proton therapy. I read were UC is a leader in proton therapy and has one of the largest grants in the country.
To summarize your 28 day procedure was mostly uneventful?
Were you put in the gantry?
Was the prep each time of full bladder and empty rectum difficult to repeat each day?
Did have to wear a catheter for some time after?
And at 5 years your ED and urinary system is at baseline as before the procedure?
My decipher testing on my 3+5=8 should be complete in 2 weeks.
I am thinking of sending the samples out for a come opinion binder Epstein…although I know if have 2 cores of 3+4 and 8 of 3+3 so I am bilateral.
Again….
Thanks for all the advice.
I had Proton 28 sessions. I too suffer from diverticulosis. I did prostox and would recommend it. They did not design prostox for 28 session proton but my rationale was that if it revealed sensitivity to radiation I would not proceed. I have no ed yet at 16 months at 70 years old. The diverticulosis during radiation caused a pocket to burst and I had some bleeding from that but not a big deal. In your shoes I would hit this hard, radiation plus ADT. While focal therapies can work I think grade 5 will be a problem. Don’t neglect the SBRT mri guided option either, that is showing low side effects. Be sure and have a spacer of some sort. This is all my opinion, listen docs from quality centers.
@neilmartin
Thanks so much.
Did you have any urinary leakage or pain?
Was your grade group 4?
I really hate to think about hormone therapy and all the side effects. I had rotator cuff surgery last year and finally got back into shape.
I watched a PCRI video and 1/3rd of mean having proton therapy decline the hormone therapy.
Hopefully my decipher will come back low risk for my 3+5=8.
@brianjarvis
I wish brainjarvis was the rad onc I have been talking to. I can't convince any that proton and prostate is a worthwhile combo. They all say something like the new x-ray/photon tech is just as good, or there is no proof proton does anything better in any way, and this is places that have the proton machines so they should care. I don't know how you got in, but I am batting zero on proton, and I am talking places with proton machines. I am tulsa pro recurrence, recurrence still in gland, turned down for repeat since suddenly Dr Scionti thinks sound waves will bounce all over from scar tissue, where-as before he said he could do it as often as needed. Anyway, I don't think rad onc are taught anything about proton, outside maybe it is used in special brain tumors or something. Otherwise they think it worthless just about, and I am doing everything I can to connect to places with proton, just batting zero is all I can say.
@jaygk By “mostly uneventful” I mean that I only had 1 day of adverse side-effects during treatments. On the 3rd day of treatment, I had urinary difficult issues. My RO told me that with some men there’s an inflammatory response to the radiation, and if that inflammation is near the urethra can cause the issues that I was experiencing. He recommended that I take 2 Tamsulosin/day for the remainder of the treatments. Everything cleared up by the next day; I haven’t had any issues since. My “recovery” from the radiation treatments was uneventful.
If being “put in the gantry” you mean placed on the treatment table in the radiation room, the answer is yes.