Decision Time

[WilsonPickett]

Vitals: PIRADS 5, Gleason 3+4 = 7, 1.8 cm lesion right anterior abutting capsule, involvement in 5 out of 12 cores, perineurial invasion is identified in two of the 12 cores, . Decipher Score 0.49. Overall intermediate risk group 2.

Hi All,

I haven't posted in a while as I've been waiting for appointments to occur. I have finally met with two top surgeons (Laudone, Tewari) and one radiation oncologist (Zelefsky) at Memorial Sloan-Kettering & Mount Sinai, both in New York City.

As can be expected, treatment recommendations by surgeons speak highly of surgical outcomes, while the Radiation Oncologist speaks equally high of his offerings (5 treatments of MSK Percise-SBRT, no Hormones or additional drugs at this stage).

Almost all the data and clinical study results I’ve read via this site show the outcomes are basically the same in terms of reoccurrence. This has made my treatment decision quite difficult, as compelling arguments have been made by all, especially the RO (Example: ”Why would you have an invasive procedure when you could have a non invasive procedure if both offer the same success rate?”)

I have a favor to ask of this community. Could those of you who are post radiation (SBRT preferred), treated for similar diagnosis, share your outcomes and how you are feeling, whether your radiation is six months out or six years. I have friends and family who have been through RP, so I think I’ve received sufficient first-hand feedback, but I don’t really know anybody who’s been through radiation with my similar prognosis. Sharing your quality of life experiences would be extremely helpful.

My surgery is scheduled for September 22, so if I’m going to switch to radiation I have to change course pretty soon.

Thank you all!

[Tall_Allen]

Those are some very good doctors.

Of course, I agree with Zelefsky, which is why I chose SBRT 11 years ago. No lasting side effects. Treatment was a big nothing - lay on a bench 5 times for 5-10 minutes, and I was done.

Here are questions to ask yourself:

prostatecancer.news/2017/12...

While the oncological results will be the same, the side effects of treatment are quite different.

Perhaps it would help you to lay out in writing what you see as the advantages and disadvantages of each for you?

[WilsonPickett in reply to Tall_Allen]

That is one hell of a testimonial. Thank you for sharing. The fact that you’re 11 years out and doing fine it’s a pretty serious corroboration of everything that he said to me. I’m assuming at the time that you did this, there were no markers inserted into the prostate nor was a spacer (Space OR) used, and still you came out unscathed. Impressive.

[Tall_Allen in reply to WilsonPickett]

Of course I had gold fiducials. They've been used since prostate SBRT began in 2003. They've been used well before that for IGRT/IMRT. SpaceOAR does little.

But anecdotes like mine should not be persuasive. It's just one man's experience. Instead, here are the outcomes of 560 men treated with 12 year results:

redjournal.org/article/S036...

For me, the decision was all about retaining sexual potency (given that all treatments have equal oncologic outcomes for my risk level). That eliminated surgery right off the bat. For me, it came down to a choice between SBRT or HDR brachy. I chose SBRT because it was so easy and cheaper.

What is important to you in your decision?

[WilsonPickett in reply to Tall_Allen]

Certainly sexual potency is right up at the top. But I also want to not have chronic pain and discomfort as a result of the treatment. I’ve had prostatitis on and off for 40 years, and was very concerned that the biopsy would be a major irritant. Much to my surprise the opposite occurred. So I’m hoping, although it’s not directly related, if I go with SBRT that it will not have any affect on the prostatitis. PS-where I would certainly never make my decision based on one man’s outcome, it is nonetheless encouraging to know that such positive stories exist, especially since my contact with folks like yourself who have been treated with radiation has been limited.

[Tall_Allen in reply to WilsonPickett]

It's called "the availability heuristic." You do it because you're human. It took me 20 years of working with statistics to keep myself from doing it. But I still do, from time to time.

Prostatitis won't get better or worse with radiation. But there is an effect you should be aware of. It never really goes away, and it makes your PSA fluctuate as it relapses and remits. If you are prone to anxiety, the bounces it causes in your PSA can drive you crazy. We are all comforted by a PSA pattern that goes steadily down, but with a history of prostatitis, it probably won't be a steady pattern. Maybe knowing that up front helps. If you have surgery, and it is successful, you will be rid of your prostatitis forever and your PSA will be undetectable, which is comforting. So it depends on how anxiety-prone you are. I practice mindfulness, which helps overcome anxiety.

[WilsonPickett in reply to Tall_Allen]

I meditate and practice my yoga as much as possible along with swimming. I don’t think you can have PC and not come to some sort of grip with your own mortality, and then make peace with it. I find myself more disturbed with the finality of RP than the idea of a fluctuating PSA, although I feel that would also require some kind of “zen” to keep you from running to an MD every time it goes up. Incidentally, in 40 years of prostatitis my PSA never went up. Only in the past two years…and slowly, from 2.7 to 6.4 when the internist suggested an MRI and the rest, we’ll…..

[Hidden in reply to Tall_Allen]

Well put.

[doc1947g in reply to WilsonPickett]

I am 74 y.o. and had a G(4+3=7) Grade 3 PCa. WITH A LOT OF OTHER CHRONIC DISEASES, I was not fit for RP so I was treated with VMAT-RT 3Gy X 20 = 60Gy and Lupron Depot 45mg/24weeks. Latest PSA 0.04 μg/L (2021/05/28)

And my nadir was <0.01 μg/L (2021/02/11)

[Hidden in reply to doc1947g]

👏👏👏

[JVARA in reply to Tall_Allen]

Hi Tall Allen, just wondering if I could ask you a few questions, interested to compare your history to mine as I am keen on SBRT. I will apologise for all the questions now and just feel free to reply to the ones you feel comfortable with.

How old are you and what year age did you have your treament.

What was your Pathologic stage, was it on both sides of the Prostate.

What size were the Tumours

What was your Gleasom score

Wat was your Protate size

What was your PIRADS score

What was your PSA and Free PSA

What are your thoughts on having a bone scan or PET scan

Thanks in advance

Joe

[Tall_Allen in reply to JVARA]

See profile. Looking at yours, you seem to be an ideal candidate for active surveillance. Why aren't you doing that?

[JVARA in reply to Tall_Allen]

Hi Tall Alan, thanks for your reply..I just saw my Nurse today and she went through the biopsy report. out of 16 cores they found 3 that have tumors largest was 2.5mm. 3+3=6 for all three.. and 3 where found to have High-grade dysplasia. and thats if its correct as they cant be 100% until its actually out and biopsied. My concern about AS is if another one grows or if they grow outside the prostate and then nerve sparing can be a problem. Im not sure what to do so I will seek another opinion.

[Tall_Allen in reply to JVARA]

You sound like the perfect candidate for active surveillance. You have what is called "very low risk" prostate cancer. NCCN, an organization that establishes the standard-of-care for all cancers, says active surveillance is the preferred action in such cases. Frankly, any urologist who recommends anything other than active surveillance for you should not be your doctor. Consider finding a doctor a a major tertiary care hospital in your area that has an active surveillance program.

Active surveillance means that you will watch it very closely. There will be a multiparametric MRI and a confirmation biopsy within a year, also one or two PSA tests. A second biopsy will give you more confidence that your cancer is indeed the low risk type. Depending on what they find, they will adapt your surveillance plan.

In the longest running clinical trial in North America, 55% of patients have been able to stay on AS without progression for 20 years so far.

Do not make any hasty decisions, and do not let this doctor rush you. Prostate cancer is usually very slow growing with characteristics like yours, and waiting a year to make a decision is never a problem. See how you feel a year from now, after you have a confirmation biopsy.

[JVARA in reply to Tall_Allen]

Thanks Tall allan..im definitely not rusing into anything..I also am looking into the effects of a vesectomy and PS..I have seen a lot of reports stating some connection..I have had ongoing I have had ongoing epididymis problems since I had mine 18 years ago..been to the doctors so many times but been told thats the way it is, had a few ultrasounds but had no resolution. Plus my PSA was always elevated since and been going up . I think its definitely something to do with the vasectomy. there was another post I read that said "Scientifically the prostate fluid is acidic and semen alkaline. After a vasectomy the volume and alkaline is reduced so the prostate has an increase in acidity. As we know acid is corrosive!"

[Tall_Allen in reply to JVARA]

This is irrelevant, isn't it?

[Hidden]

I can say that where I went the group of surgeons and radiologists got together and made the decision. Surgeon called me personally and gave me his opinion. It was I’ll do it but don’t recommend it. His exact words were , It will be bloody.

While I was doing my radiation,which they recommended, there were 2 doctors in my group. Both had opted for surgery.

Be nice if it was cut and dried. It isn’t. Hope you can stay away from ADT.

[Hidden]

I was stage 4 over six yrs ago I wasn’t a candidate for surgery . Prostate broke out pc tumors in pelvis and blocked urethra and bladder. K failure then tubes out of my back and a foley for a yr and a half. I did imrt , Lupron and a test adt drug that I’m still on . That drug failed and was dropped . It worked for few guys like me. Ive had no signs of pc and psa .1.. Good luck

[Hidden in reply to Hidden]

Pretty cool. What was/is the drug? Amazing how things work for some and not others.

[Hidden in reply to Hidden]

Tak-700 and I’m the only one of us on HU that’s used it ..

[rocketman42]

Hi - My case which was discovered and treated 5 years ago was similar to yours since I was also 3+4 and classified as intermediate. I spoke to several surgeons and Dr Zelefsky at MSKCC as the RO. For me it was an easy decision since statistically the success rate was the same for both modes of tx but the side effect profile with SBRT was much more favorable. Seemed like a no brainer to me. Since the outcome is highly user dependent it is important to choose your doctor wisely and Dr Z has a tremendous reputation.

I had both the fiducial markers and SpaceOar placed by Dr Z. The radiation procedure itself was a non-event and easy to undergo. I experienced no side effects at the time nor do I have any of consequence now.

In summary, if you're a candidate, I recommend Dr Z, MSKCC and SBRT.

Good luck.

[Hidden in reply to rocketman42]

Great results rocketman!

[1Ubspaine]

Age 64, G7(3+4), Intermediate High Risk.I underwent 5RT with spacer and markers at UT Southwestern in Dallas with RO Dr. Garant. Just completed 3 weeks ago so I am a rookie. I am taking 9 months of Firmagon, you are fortunate to avoid.

It was a hard decision for me, but am at peace with it now.

In the end, I decided to avoid a nasty surgery and the higher risk of urine leakage moved me to RP.

[CarverD]

Not exactly like you but more anecdotal evidence. Age 63 at time of treatment, GL7(3+4), intermediate risk group. 2 sessions of HDR Brachytherapy October 2020. Worst event was pulling the catheter the following morning. Out bow hunting 6 days after 2nd treatment. No lasting side effects 11 months after treatment. QOL was my primary concern and this dropped surgery to the bottom of my list. Best of luck!

[Hidden]

Wilson , please follow an expert .. I feel that you caught this in enough time to push it away. Do so! Live to fullest.👍

[Adf2529]

I’m nearly 2 years out, from SBRT. Very pleased with outcome, based on the same considerations expressed in other comments. I also brought moderate, long-term BPH symptoms to the experience. The resolution of those symptoms took longer than I expected. Flomax helps. Interestingly, the improvement of my symptoms corresponded (as a matter of chronology) with the addition of a low-dose anti-depressant. Not sure they’re connected but could be.

[WilsonPickett]

Thank you very much everyone. Your comments are extremely helpful. I have decided to go as a result of many things with the MKS Precise SBRT. Wish me luck…

[kayak212]

After being on AS for 6 years i finally just completed SBRT on 8/2/21 at Emory Winship Cancer Inst in Atlanta. I am 81, have GS of 3+4=7, a not so great Prolaris Test Score and a PSA which jumped from 10.6 a year ago to 19.3 3 months later. I also have co morbidities ..heart disease and T2 diabetes and i resisted recs from 2 Urols and a couple of ROs until the spike in my PSA and my family convinced me to have treatment. Since completing it i have had minimal urgency problems and occasional slight fatigue but i have continued to be able to complete the same rigorous workouts i had been doing for the last 7 years and while not as easy as before Im getting through them. I feel fortunate about the minimal side effects, but realize that im not out of the woods yet....probably need a couple more months for that. My RO suggested 3 months of hormone therapy before i started treatment but i refused and he agreed my case didnt make the hormone therapy important, especially due to my heart disease. My targeted fusion biopsy from July 2019 showed the same 2 tumors as originally found and I'm still not sure why my PSA jumped so much ,but i have always had EVERY biopsy reviewed by Jonathan Epstein at Johns Hopkins for 2nd op before placing any confidence in the results, and have also had my last 2 3T MP MRIs reviewed for 2nd op by Dr.Peter Choyke of the Natl Inst of Health...before having any confident in those reports. I may have made a mistake deciding on treatment, but my heart and diabetes specialists said i should not give much weight to those two conditions in my treat vs no treat decision because both are well controlled. Just my opinion, but i would never select removal of my prostate, at least not for an old man like me, but even if i were younger, having studied PC for 5 years, radiation, particularly but not only SBRT seems to have as good an outcome as surgery without the potential serious long lasting side effects. I dont know if you have considered getting a genomic test like Prolaris, Oncotype DX, Decipher...whichever is best suited to your case facts...to evaluate how aggressive your PC seems to be, but GS 4+3=7 is more serious than GS 3+4=7 so i would urge you to make sure you have 4+3=7 as a key element of your decision by getting a 2nd op if you can do that in the UK. If not Johns Hopkins charges $300 to do it and they are by far the best Path lab in America for 2nd ops of prostate biopsies.Wish you the best and hope my feedback helps you. Even with your case facts I wouldnt treat a decision as an emergency.

[WilsonPickett in reply to kayak212]

Thank you kayak. I am in fact a 3+4 = 7 Gleason, my deciphers intermediate, 2.9% percent morbidity within 10 years, which are pretty damn good odds if you ask me. I’ve decided to move ahead with the SBRT MRI guided @ Sloan Kettering in New York City. I feel like I’m in good hands. Thank you for your feedback, it’s always valuable, all the best to you.

[kayak212 in reply to WilsonPickett]

WP...sorry i misread your stats re GS and missed the Decipher score...Senility i guess.LOL. From my recall of Decipher you have a good score on that and I know you are working with a great doctor in Dr.Z who Tall recommended to me ,too. I may wish i had travelled to NYC for my SBRT but I didnt have the energy to do so. You have an excellent plan and I hope you have an excellent outcome!

[treedown]

1.5 years out on IMRT 80gy 44 sessions up to aortic bifurcation. 58 yrs old, mo issues at this time.

[ODave]

Post SBRT at UCSF last September. I was Pirads 5 1.9 lesion. 17 cores 5 were high volume. 3+4-7. I’m 56 now, surgery was just to much in my opinion for keeping life as close to normal as possible. I figured after doing months of research and meeting with surgeons and RO’s that in the end I picked SBRT. It’s strong, precise and I wanted to hit the C like a hammer so I went for it. Everyone I spoke to that had surgery wound up having radiation at some point anyway.

[WilsonPickett]

Just an update to those who are interested: Had a six month MRI at MSK which showed no change, so we were all pleased about that. Treatments with MSK precise and Dr. Z start November 10. Wish me luck. Special thanks to Tall Allen and all of you for the feedback and support. This group has been really helpful.

[Hidden]

Hey Wilson! I did imrt over six years ago along with Lupron 18 months and I’m still on Tak-700 halting t from the adrenal .. 5 yrs clear.. Rt works . Good luck . 🍀 I wasn’t a candidate for an Rp. No promises given with any treatment. They all have side effects. Our Hope is for life extension . There is plenty of suffering to go around. Heal yourself and get though this and back to living . 🙏