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 Your research suggests a 10% increase in metastasis free survival with the addition of 6 months of ADT.
Yet, you don’t see that as a big enough reason to take it…
How about a financial investment that garners a 10% return for 10 years…How does that sound?🤗
Phil
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I wish that was enough.
In 2023 my medical provider decided to charge for Lupron shots. I was charged $800 for a six month shot. The three month shot would be $400.
Yeah, if I ever exceeded my part B minimum of about $8000 I wouldn’t have to pay anymore, but I have never reached any thing even close to half that.
Part D on the other hand exceeds the $2100 limit with the first order of Nubeqa In January. And from then on all my drugs are free.
I switched from Lupron to Orgovyx Because of that. Then I found it gave me a fewer hot flashes.
@jeffmarc I’m familiar with Medicare Parts A, B, and D. I also have a supplement (Medigap) plan. I’m unfamiliar with any “minimums.”
When I had my two Eligard injections (April & July 2021), Medicare Part B covered 80% of the cost; the supplement plan covered the rest. (I had no out-of-pocket costs.)
The supplement plan provider cannot “decide to charge for…..shots.” Whatever Medicare determines is covered, the supplement plan provider must cover their 20%.
Do you have Medicare Part B + Supplement plan? Or do you have a Medicare Advantage plan (that contains Parts A, B, & D)?
@brianjarvis
I’m on Medicaid advantage there are no supplementals.
For the first six years, I had no payment for the Lupron shot then they decided to start charging the 20%.
That’s why I switched to Orgovyx. Good move.
@jeffmarc I see. Advantage plans have their own underwriters and can pretty much make up their own rules (within certain limits). Supplemental plans have to pay if Medicare pays.
@brianjarvis
It’s $15 for me to see a doctor for any issue. Check up is free of course.
$275 for an MRI or CT scan,
Blood tests are free. X-rays are free.
Any type of surgery is no more than about $200
I pay $119 a month And that covers a gym membership and $300 toward glasses every 2 years.
ER visit is $175
I think supplemental insurance is a lot more.
@jeffmarc True - Supplementals are a lot more. But, I prefer no surprises, rarely need for a referral, and no networks. That access comes at a price$$$ (With multiple gym and Y memberships that accept SilverSneakers.)
I had a 3+4 I sent it to Dr Epstein he graded it to a 3 +3 but my urologist at Nebraska Med Center continue to call it 3+4 doing Watchfull waiting for about 4 years going back for another biopsy in July the last one was 2 years ago
Thanks.
Hoping Epstein regrades my <5% of the 5 to an4.
@rice Remember that a Gleason score is a pathologist’s educated, experienced opinion of what he (she) sees under a microscope. Much of the interpretation of tissue slides (as well as scans) is often as much an art as it is a science, and depends on the skill and experience of the person interpreting them. What one sees as a 3+4, another might see as a 3+3, and another as a 4+3.
In my case, when I got a 2nd opinion on my 3+4:
> if the 2nd opinion came back a 3+3, I was still going to be treated to a 3+4;
> if the 2nd opinion came back a 3+4, I was going to be treated to a 3+4 (of course);
> if the 2nd opinion came back a 4+3, I was going to be treated to the 4+3.
As it turned out, the 2nd opinion came back a 4+3. Not knowing which one was “right,” I chose to be treated to the 4+3.
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