Newly diagnosed and looking for advic... - Prostate Cancer N...

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Newly diagnosed and looking for advice....

Hiker64
Hiker64

I’m a newly diagnosed 64 year old, very good health, prostate volume of 32 cc, strong family history (grandfather, father, brother) with prostate cancer. Father with Gleason 9 and likely grandfather too but I don’t have those records. Brother was a Gleason 7 (3+4) treated with SBRT (Cyberknife). In 2019 had a PSA of 3.0 so had an MP-MRI which came back Pirads 2. In the following 18 months my PSA rose to 4.0 so my urologist ordered another MP-MRI which showed two lesions, one Pirads 3 in the base/mid right transition zone and a Pirads 4 lesion (0.9x0.8 cm) in the base/mid right peripheral zone with 5mm capsular contact. I had an ultrasound guided perineal biopsy which came back positive for prostate cancer. The positive cores read as follows:

A.Right Posterior Medial – Adenocarcinoma 3+3=6, Grade group 1, involving one of two cores measuring a total of 1.5mm and comprising 8% of all tissues.

B.Right Posterior Lateral – Adenocarcinoma 3+4=7, Grade group 2, involving two of three cores, measuring a total of 7mm and comprising 25% of all tissue.

C.Right Base – Adenocarcinoma 3+4=7, Grade group 2, involving four of seven cores, measuring a total 18mm and comprising 42% of all tissue.

All of the other cores were benign. So, it sounds like the cancer is concentrated on the right side of my prostate. I told my urologist that I would like to get a second opinion on the pathology report from Dr. Epstein but he said he would prefer to send the cores out to have genetic testing (Decipher) which would show the future aggressiveness of the cancer. He said with my small prostate and intermediate favorable Gleason 7 I was open to just about any treatment unless the genetic testing came back showing the cancer would get aggressive. If that is the case he would strongly suggest a radical prostatectomy. I find out the results of this testing in May.

Questions… Should I still send the cores to Dr. Epstein even though I’m having the genetic testing done?

I am leaning towards focal ablation such as HIFU, TULSA PRO, or FLA. I’m thinking starting out with minimal treatment would still allow a RP or RT in the future if the ablation fails. With my pathology is this a viable plan?

With the 5mm of capsular contact be an issue with focal ablation?

Travel is not problem. I live in Ohio so it would be best to have something close but where would be the best place to go for either of the treatments?

My second choice is Cyberknife, SBRT. My brother had this treatment with Dr. Merrick (who has since retired) and got along very well. Any recommendations?

Thanks in advance for any advice or comments!

66 Replies

You may be interested in this analysis of whole-gland TULSA-PRO:

prostatecancer.news/2021/03...

Similar results for MRI-guided FLA:

auajournals.org/doi/pdf/10....

Here are issues that the proponents probably don't tell you about:

prostatecancer.news/2016/12...

With such poor results, it's hard for me to see why some urologists keep pushing it. And they push it hard, and demand cash for the therapies, including the inevitable re-dos.

Hiker64
Hiker64 in reply to Tall_Allen

Thanks Tall_Allen! I read the info you suggested and I am learning. So, is SBRT and Cyberknife basically the same thing? Any particular place or doctor you would recommend for this type of treatment?

Tall_Allen
Tall_Allen in reply to Hiker64

CyberKnife is the brand name of one kind of linear accelerator (linac) that is used to deliver SBRT. Every linac manufacturer makes at least one. I received my SBRT from a different linac - Truebeam with RapidArc.

At Cleveland Clinic, try Kevin Stephans.

Hiker64
Hiker64 in reply to Tall_Allen

Will do,,,,thanks again!

Good luck. I had my prostate removed. My grandfather died of prostate cancer. I do not regret my decision. That was In 2015.

No radiation or chemo.

Cancer free. I get a PSA blood test every 6 months.

My cancer was found in a prostate exam. He found a lump.

Biopsy showed cancer in 2 of The 12 samples taken.

Please let me know if you have any questions.

Thanks for the reply. Any side effects?

Yes. Incontinence and impotence.

They got better in time.

I had to wear a catheter for 4 weeks.

As my research continues I’ll probably have some questions for you. I appreciate your willingness to help!

Ok.

Kegel exercises help with both incontinence and impotence.

You strengthen the pelvic floor muscles.

My urologist gave me 60 Cialis.

Cured my impotence.

Great stuff.

More details later.

I had 8 sessions over 4 months of physical therapy to learn kegel exercises.

I use Depends underwear. Only one per day now.

No more impotence.

60 days of Cialis, 5 mg---restored blood flow to my penis. No problems now.

No need for more Cialis.

Kegel exercises are great. I learned many different positions and situations.

The Cialis was used for Penile Rehabilitation Therapy.

Great Therapy!!!!

Great erections starting on day 4.

In was impotent for 2 months. Big change.

Literally

Cialis does not give me an erection. It allows me to get an erection easily. I just played with my penis in the shower. Wow!!!

Thanks Dr. V for helping me get hard again. Impotence is depressing.

Questions? Please ask.

My impotence was cured before my incontinence.

I'm always masturbated in the shower. Urine would be mixed with my ejaculations.

It all felt good. My hand didn't mind the combination.

No prostate equals no semen.

My Cowpers gland produces precum fluid. It makes up the ejaculation. Still pleasurable.

No more urine.

I'm so happy to hear of your results! Continued good health.

Thanks

Good morning! I am also 64 (diagnosed at 63) with 7(3+4) 20% and an OncotypeDX test that came back showing my cancer to be on the aggressive side. I would definitely start by having your slides sent to Dr. Epstein for a 2nd opinion.

Some doctors put stock in genomic testing and others do not - I used it as another data point to add to all of the other information when making my final decision.

You need to take a hard look at all of the treatment options and how they may effect your future life. This takes quite a bit of research so take your time to get the best information you can before making a final decision. Remember that you will need to live with the outcome so be sure to examine both the best and worst case scenarios of each treatment. Be aware that many of the studies available are dated.

In the end I put surgery at the very bottom of my options list because of the profound and severe side effects it can cause. I opted for HDR Brachytherapy and am very happy with the outcome to date: PSA has fallen from 6.4 to .84 ng/ml over the past 6 months, immediate side effects, which were minimal, cleared themselves within 2 months. The only long lasting issue is slow starting urine flow/weak stream which is completely controlled with .5 mg Cialis/day (I might add that this treatment has some benefits as well). The immediate side effects were so minimal that I was out on a mountain side 6 days after the 2nd procedure bow hunting whitetail deer.

Best of luck in your decision making process. Feel free to reach out if you would like more information about my particular case.

- doug

Good luck. Please keep us posted.

Hiker64
Hiker64 in reply to CarverD

Thanks for your reply. I really hadn't considered this treatment but it sounds like it's another option I should look at. My urologist was pretty confident that the genetic testing would suffice without sending the slides to Epstein. He thinks that if a Gleason 7 (3+4) core comes back aggressive on the test then we should take more aggressive action. I think I was hoping maybe Epstein would rate my pathology a Gleason 6 and I could do active surveillance for a while, but I guess it could just as well come back from Epstein with a worse pathology than 3+4 too. Hadn't really considered that one! I'm thrilled you are getting along so well!

Yes, send samples to Hopkins/Epstein. Why not? Nothing to lose and additional info to gain. Btw, if travel is no issue, consider Hopkins.

Hardly a MD here but my input is this: get second and third opinions from uro, RO, and medical oncologists. Be cynical about what you are being told: remember, uros are surgeons and they cut for a living; ROs believe in radiation; medical oncologists may provide a less biased appraisal of your condition and recommendations for treatment. Oh, btw, Tall_Allen has provided some excellent articles re ablation. I had a doc who "pushed" cryo; I found another doc.

I chose IMRT, brachy boost and ADT. For me, the ADT was a massive bummer; not sure I'd do it Make sure you learn A LOT about the side effects of whatever treatment you choose. Your life is going to change. And, change in a short period of time. It ain't easy. Fortunately, memories fade. But, for most, I think, it's a rough ride.

You'll find a lot of info and support here. We're all members of a club that no one wants to belong to.

Good luck to you.

EdinBaltimore

Hiker64
Hiker64 in reply to EdinBmore

Thanks!

Don’t let the doctor talk you out of sending a sample to Dr. Epstein. They want to avoid the embarrassment of a re-grading. And that happens quite often. It happened to a friend of mine, actually two of them.

Hiker64
Hiker64 in reply to CalBear74

Epstein seems to be the advice I've been getting. I'm wondering if they cores can be sent to both places at once or will I have to wait until the slides come back from the Decipher testing? Good question for my urologist. Thanks for the reply!

JimsWife1
JimsWife1 in reply to Hiker64

Slides can be sent to both Hopkins and Decipher at the same time. Hopkins will receive your entire paraffin block of specimens where’s as Decipher will get portions of only the affected slides. They can explain it to you better than I can, but it’s absolutely possible for your pathology to be in two places at the same time.

Hiker64
Hiker64 in reply to JimsWife1

Thanks!

ODave
ODave in reply to Hiker64

I was Pirads 5 and sent my slides to Epstein, well worth the few hundred bucks

Hiker64
Hiker64 in reply to ODave

Thanks! Did he change your Gleason score on the pathology report?

ODave
ODave in reply to Hiker64

It didn’t change the Gleason score (I was 3+4=7 with high volume in the cores) but it changed a few other things, a few of the original cores were downgraded to 3+3 so that was better and it did identify some Cribriform cells which are more aggressive that they didn’t catch when I had the 17 cores taken out.

Hiker64
Hiker64 in reply to ODave

That's good information to know. I'm planning on sending my cores to Epstein. Thanks again!

ODave
ODave in reply to Hiker64

You bet anytime, I remember when I got diagnosed I tried to get all the info I could.

Hiker64. Sorry to hear you have joined this club. You will find this is a really great support community.

I am about the same age, similar situation.

As others have noted, you will need to do a lot of research and connecting.

Like yourself, and probably many others, I too started off looking at Tulsa Pro, FLA and some of the latest, greatest treatments. Unfortunately, the outcomes just do not support the hope. I was ready and willing to drop $40k and / or go overseas and there are plenty of practices willing to take your money. Stick with the science vs the anecdotes and be careful of confirmation bias.

Sadly, there are no great options. I am learning that myself. I have not yet decided on treatment, leaning toward some form of radiation. If I must go the surgery route I think I finally found someone I have at lease reasonable confidence in.

You need to get multiple opinions, recognizing that most are biased. My local urologist gave me the line about how surgery is essentially the only option for guys my age and that if you do radiation all sort of horrible things will happen. He very much downplayed the likelihood of adverse effects from surgery. I then went to a Center of Excellence (Fox Chase) and it was a very different experience from the local Uro. The surgeon I met with was open and honest. He stated that in my case he feels that either surgery or radiation is likely to have a positive outcome. He was very clear about the risks and side effects of each and was also very honest in that he is not an expert in radiology and that I should definitely consult with someone who is and make a decision based on what is important to me in the short term and over time. I did not ask what he would do but, my spouse did. Of course he said he would go with surgery but his reasoning was not based on FUD but was a rational argument that with surgery it is easier to know if you "got it all" because of being able to buiopsy the entire removed gland and no PSA roller coaster. I have meeting with radiation guy next week and may do a 2nd depending on how that goes.

So, do your research, take your time, get to a center of excellence, take advantage of these boards, be careful of unproven therapies with high price tags, and get multiple consults with specialists as well as oncologist.

Best of luck.

Hiker64
Hiker64 in reply to PCInPA

Thanks for your reply and advice. I believe my urologist is thinking the same thing. If I have the surgery then we'll know for sure what it was. I would hate to find out that something less would have worked just as well without the list of side effects I have heard from RP. Have you checked out Cyberknife or the SBRT option?

hi Hiker64 ... consider checking-out the Sperling Prostate Centre ... sperlingprostatecenter.com/ ... best wishes ... Nous :)

Hiker64
Hiker64 in reply to Nous

Thanks, I'm looking at everything right now. So much to learn!

Nous
Nous in reply to Hiker64

you're right ... i remember being there ... the learning is super important because it helps you to make the best decisions for yourself ... best wishes ... Nous :)

I checked out Spelling. My two issues there were.

1. I felt they were pushing a sale. More like I was their next customer rather than their next patient.

2. The scientific efficacy data behind FLA and Tulsa raises a lot of questions. If I am going to pay $50k out of pocket it needs to work and not leave me going for surgery or radiation 2 years later.

As noted, my inclination at the moment is sbrt and / or seeds. Can't make that decision until after I meet with Radonc.

Slow down.... you have time....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/28/2021 10:48 PM DST

Hiker64
Hiker64 in reply to j-o-h-n

Thanks!

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