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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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@jaygk
Definitely get Orgovyx, For no other reason than it allows, your testosterone to return more quickly within three months most men get a significant amount back. While on ADT, if you can use an estradiol patch, it can allow you to have the desire for sex and it will reduce your hot flashes and help with other things What you’re not all that relevant with only six months.
As I already mentioned, if you are a five and have a high decipher, it is really important to have it. If they are able to reduce that five to a four and your decipher is low than you could consider not doing it.
It might make sense for you to have your biopsy reviewed by an expert. The top guy in the country for doing biopsy reviews is Dr. Epstein. You can call him before having the Evaluation and you can call him after and he will talk with you and explain everything to you. It will cost $500 however Insurance usually does not cover it. This guy has seen hundreds of thousands of biopsies.
Another thing you might want to do if you’re not going to Send it to Epstein is find out if the pathologist Who does the second review of your biopsy is a specialist in prostate cancer. If they are not, then you are not having it reviewed by the right pathologist..
Dr. Epstein biopsy
https://advanceduropathology.com
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3 Reactions@jaygk Someone with WellCare part D (prescription) posted complaining that WellCare would only approve 30-day supplies of Orgovyx. Since this stuff is expensive that is true of all the brand ADT pills from all insurers. They do not want to pay when you might quit taking them, change insurers, or die. It is different with a generic that costs $10-$30 per month. At that point they get labor savings from fewer fills. My commercial insurance was the same way. Heavily stress mail order 90-day fills but for Orgovyx I had to pick it up every month and only specialty pharmacies can carry it.
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1 Reaction@jim18 Do you find or have read that the generic works as well as the original Orgovyx?
@jaygk
There is no generic Orgovyx Yet. It hasn’t been out that long. You have to wait until 2036 or 2037 to get a generic version.
@jaygk That was a general comment about generics and insurance. You will hit the Medicare part D max out of pocket so more of an issue a few years ago. Will probably be close to the max even with Lupron.
@jim18
Lupron is not covered by part D.
That’s one reason I switched from Lupron to Orgovyx.
Hi @jeffmarc, I’m a bit confused. I did proton, whole gland, was on Orgovyx for 14 months (before & after treatment). Was Gleason 8. After months of no libido, started getting minor erections. Tested it out and not only orgasmed, but had fluid, presumably semen. Is this even possible? Does this mean the Proton didn’t work?
@jeffmarc I should also add that I finished treatment mid-sept and been off Orgovyx since March 3rd
@robertov
It is possible that a small amount of semen could be produced still. More likely the following.
Reduced/No Volume: Radiation causes tissues in the prostate and seminal vesicles to scar or become fibrous. Since these glands produce \(90\text{--}95\%\) of the fluid in semen, this damage results in little to no liquid being produced.What comes out? If any fluid is produced, it is likely only a very small amount of clear "pre-cum" (fluid from Cowper's glands), which are less likely to be damaged by radiation than the main prostate/seminal vesicle glands.
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2 Reactions@robertov
my research shows that if testosterone level was 400+ before
on Orgovyx for 6 months it can take 3-6 months to get testosterone up to 300, with chance of getting to your baseline 50-65%
If on for 18 months it can take 1-2 years to get to 300 and only 20-40% recover by 12mo and 50-70% recovered by 24 mo.
My radiologist oncologist said there are unicorns that do much better. You may be one of those.