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I'm new here. I've been diagnosed with prostate cancer.

Cory_777 profile image
26 Replies

About a week ago, I went to NIH to have a MRI-directed targeted biopsy of my prostate. It was done by one of NIH's top urologists Dr. Peter Pinto. (I'm enrolled in a protocol for prostate cancer at NIH with Dr. Pinto.)

A urologist working with Dr. Peter Pinto called me yesterday with the results. As I suspected would be the case (because of two MRIs I had some months ago which detected cancerous lesions), I have multiple areas where I have cancer. 6 of the 16 biopsy cores were positive for cancer.

Several places have a Gleason score of 7 (3 +4) plus a worrying "cribriforming" (which apparently is predictive of poor outcomes).

The doctor thinks they've caught the cancer before it has metastasized beyond the gland.

The doctor said that "watchful waiting" is no longer an option. I need to have surgery or radiation. If I did nothing, the doctor told me I would likely have a 10 year life expectancy.

My father died of prostate cancer. I have an enlarged prostate (79 cc), and my PSA has been steadily rising for decades (my most recent PSA is 7.38). I'm 73 and in very good shape physically and healthwise.

I'm reaching out to get advice. What should I do? Radiation or surgery? I am really unsure as to what path to take.

My goal is longevity and I'm willing to sacrifice quality of life. Without PCa, I'd be likely to live to over 100.

What about new treatments like TULSA PRO? Would that be better than either radiation or surgery?

Thanks for any guidance anyone can give me.

Best, Chris

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Cory_777
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26 Replies
Tall_Allen profile image
Tall_Allen

With your "unfavorable intermediate risk" prostate cancer, brachy boost therapy has the best results. With surgery, you can expect about a 50% chance of 10-year progression-free survival (probably less because of the cribriform); SBRT has about an 85% chance at 7-year recurrence-free survival, and Brachy boost therapy has about a 92% chance at 10-year recurrence-free survival.

prostatecancer.news/2018/10...

Unfortunately, with your large prostate, they either have to shrink your prostate with ADT for 9 months before implanting seeds, or you have to get a special kind called high dose rate brachytherapy where the size of your prostate is not an obstacle. If you are in the DC area, you can talk to Sean Collins at Georgetown about SBRT. At Fox Chase in Philly, you can talk to Eric Horwitz about brachy boost with HDR brachy.

You are not a good candidate for focal ablation with Tulsa Pro because of multiple cores, and recurrence rates are very high with whole gland ablation.

Steveo3312 profile image
Steveo3312 in reply to Tall_Allen

Tall, thank you for your contributions on this site.

Cory_777 profile image
Cory_777 in reply to Tall_Allen

Dear Tall, I'm so grateful to you for your helpful reply. Thank you!

Best, Chris

dentaltwin profile image
dentaltwin in reply to Tall_Allen

What in his history makes him unfavorable intermediate risk? I thought Gleason 3+4, confined to gland was considered favorable intermediate.

Tall_Allen profile image
Tall_Allen in reply to dentaltwin

Yeah, I thought long and hard about that. It's a judgment call, but I think the cribriform pattern puts him over the edge. Unfavorable intermediate risk is, in part, defined by "Multiple NCCN intermediate risk factors," and I don't think he should be treated as favorable risk with the cribriform pattern. If his % pattern 4 is less than 5%, maybe.

dentaltwin profile image
dentaltwin in reply to Tall_Allen

Thanks!

Cory_777 profile image
Cory_777 in reply to Tall_Allen

Hi Tall, I just checked my pathology report. My cribriform at 3%, so perhaps I am favorable intermediate risk. Do you still recommend SBRT?

Cory_777 profile image
Cory_777 in reply to Cory_777

PS Oops, sorry, Tall, I was not recalling your recommendation correctly. I meant, do you still recommend brachy boost therapy? Sorry for the confusion.

Tall_Allen profile image
Tall_Allen in reply to Cory_777

Talk to your radiation oncologist. I'm not an expert at cribriform. If the risk is small, you have the option of being treated as favorable intermediate risk. If so, SBRT would be a good choice and you would not need ADT with it.

Cory_777 profile image
Cory_777 in reply to Tall_Allen

Hi Tall,

You wrote: "You are not a good candidate for focal ablation with Tulsa Pro because of multiple cores, and recurrence rates are very high with whole gland ablation."

I had 6 cores out of 16, but the doctor told me I had "two hot spots" and perhaps one other spot with a Gleason 3+3. Does that change your assessment of "multiple cores"?

Another question, and please forgive my ignorance. If I use TULSA PRO for whole gland ablation (which I presume means the whole gland is destroyed), how can PCa reoccur?

Thanks for helping me understand this.

Best, Chris

Tall_Allen profile image
Tall_Allen in reply to Cory_777

You have a misguided notion of what thermal ablation is and does. That's because the proponents are deliberately misguiding you. Please read this article:

prostatecancer.news/2016/12...

The FDA rejected HIFU (Tulsa Pro is just HIFU done with MRI guidance) as a prostate cancer therapy in the US. (The HIFU manufacturers got them to approve it for removal of prostate tissue (like a TURP) which is a completely different thing. Canada once allowed it, but they rescinded it. If it were effective against prostate cancer, they would have permitted it.

If you want to do it as part of a clinical trial, where you are explained the risks, that may be reasonable.

in reply to Tall_Allen

Mayo is doing Tulsa-Pro now. Doesn’t seem reasonable that they would be doing it if it was dangerous. I do think the Intermediate favorable cutoff is recommended.

Tall_Allen profile image
Tall_Allen in reply to

You think Mayo is immune to profit-mongering? Just look at how they are still pushing C-11 Choline PETs long after it has been superseded. I didn't say it was dangerous. I said it hasn't been proven to be effective in long-term trials. It has never been appoved as a treatment for prostate cancer.

labrat1 profile image
labrat1

I also was diagnosed by Dr. Pinto and am being treated at NIH. Have you talked to the other members of the prostate team at NIH? They are all outstanding.

Cory_777 profile image
Cory_777 in reply to labrat1

Thanks for your message. Who else at NIH do you recommend I speak to?

Have you had your prostate removed by Dr. Pinto? If so, how did it go? Is he a highly experienced surgeon?

labrat1 profile image
labrat1 in reply to Cory_777

I did not have surgery. But I am curious as to what the prostate team recommended. Did you meet with Pinto and others after the results were presented to you?

Cory_777 profile image
Cory_777 in reply to labrat1

A young urologist who works with Pinto recommended SBRT. I haven't yet met with Pinto and his team.

What treatment did you opt for?

What do you think of SBRT?

ODave profile image
ODave

I’m also 3+4 and my original biopsy didn’t show any cribriform. But when I sent the panels to Epstein they saw it in one of the cores however it was equal to or less than 5% so I was able to hold onto “favorable”

Cory_777 profile image
Cory_777

Thanks, ODave.

SpecialName profile image
SpecialName

Similar situation. 6 of 12 cores positive. I've have a total of 3 reads of my slides.

Dr. Epstein see 2 cores 3+4 less than or equal to 5% pattern 4. "Pattern 4 has in areas a cribriform morphology." One of these shows evidence of PNI. The other 2 pathologists saw 1 core with pattern 4 and neither mentioned cribriform.

MRI positive for 6mm lesion. Latest PSA if 6.75.

It's hard for me to determine whether this is favorable or unfavorable intermediate risk. It's also hard to decide if surgery or SBRT+ Brachy Boost would be the most effective therapy.

I've been advised to have surgery from surgeons, radiation from radiation oncologists and Active Surveillance from Dr. Scholz.

CHPA profile image
CHPA

Tall certainly knows what he is talking about. My circumstance a year ago was a little more straight forward. 58 years old. G8 (reduced to 7 when biopsied after removal). PSA 7.something and like you, longevity was the goal. . I'm in good health otherwise and surgery was really the only option I considered and I'm glad of that. I made this choice after talking to my urologist as well as a few friends who are MD's. No regrets. Surgery was straightforward. I recovered as predicted. PSA is undetectable. Bladder no issues. Sexual function still recovering but I'm positive things will work out. If you are at NIH, what do they say?

Cory_777 profile image
Cory_777 in reply to CHPA

They recommend SBRT. What do you think?

Have you heard of TULSA PRO?

CHPA profile image
CHPA in reply to Cory_777

Generally yes. But I was pretty focused on surgery as opposed to radiation.

Cory_777 profile image
Cory_777

Thanks for your fascinating comments. Dr. Scholz seems to be amazingly helpful -- and unbiased.

Have you considered TULSA PRO?

Garp41 profile image
Garp41

I would ask NIH if you are a candidate for focal therapy.

Doug

Cory_777 profile image
Cory_777 in reply to Garp41

Thanks, Doug. Good idea. I will.

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