New member info - Gleason 7 - making decisions

Hi everyone, great forum, and I've spent the last day or so getting acquainted with it and reading LOTS of good info. Very helpful and reassuring to say the least, thanks!
In my case, after seeing rising PSA levels (6,7,8) starting in 2018, I found a good urologist through Kaiser here in Oregon, and had my first biopsy in July of 2019. Three of the twelve samples showed 3+3, with 2 of them involving 5% of the core, and the other one involving 80%. An MRI was done soon afterwards, and the imaging confirmed the biopsy results, and found no other affected areas in the pelvic region.
I elected to start active surveillance with PSA tests every 3 months. During the next year and a half, my PSA results went from around 8 to 12, and I had a 2nd biopsy in April of 2020, 22 months after the 1st one.
This one showed malignancies in 6 of the 12 samples, and as before, they were all on the right side. Two of them were graded 3+3, three were graded 3+4, and one was 4+3. My urologist discussed treatment options of RP, EBRT, SBRT, or BT. A bone scan and CT were ordered, and I completed the bone scan today, which thankfully came back negative.
A good friend had a RP via DaVinci 11 years ago, and we've had multiple conversations about it. He's still cancer-free, and although his urinary function is not 100%, he has no regrets about his course of action. That said, I'm leaning towards SBRT, and my urologist said he will set up an appointment with a RO to discuss. In the meantime, I was able to speak with a 2nd urologist to get his opinion, and like my primary urologist, he said ultimately the choice is mine, but said if it were him he'd do the RP because of my age.
I'm 54, and my concern is that if the side effects from RP by chance don't improve over time in my case, then that would become a quality of life issue for me. On the flip side, if I choose SBRT and the cancer recurs, then my treatment options are more limited than if I would have chosen RP in the first place. Both urologists said that they believe the success rate of both treatments are equal. I'd like to avoid the very real side effects of RP, but do want to leave my options open in case of recurrence. It's a tough decision.

Hey sorry you have to deal with this crap, but its good you are dealing with it!

You are going to get a ton of opinions/stories.

The one thing that is “nice” about having it removed is they get to really look at it under a microscope afterwards. They can get in there and see whats up. You get solid/definitive information about your disease, nearby lymph nodes, the seminal vesicles and the bladder neck. Not grainy images.

Good luck eradicating the critters.

PDXBob,
I always remind the new guys that you have to become your own advocate when starting PCa treatment, but it looks like you have done a great job at that already.. It sounds like you have a couple of good urologists that are open minded to all the treatment options. One of the most important things I believe is getting a good team in place: Great Doctors, Great Facility, and getting your family involved because they will be an important part of your treatment as your life will definitely change after treatment in lots of ways! It looks like you probably know more starting down this journey about treatments then probably 90% of the guys do. The good thing is PCa is slow growing most of the time so you do have time to make a decision. As Mumbo said some of the guys like to send their slides to Epstein so that is another option to look at. We wish you the very best and hopefully can add some support and encouragement along the way!!

Larry

Hello, Bob and welcome. Sorry you have to be here but we will help in any way we can.

As the others have said, getting a second read on your slides from Dr. Epstein is a prudent step. Make sure you know what you're dealing with from your biopsy. Second, get as educated as you can about our disease. You may have already read the sticky notes at the top of our forum that are designed for newly diagnosed patients. Some excellent books for perspective (IMO) are, "Surviving Prostate Cancer" by surgeon Dr. Walsh and, "Invasion of the Prostate Snatchers" and "The Key to Prostate Cancer" by prostate oncologist Dr. Mark Scholz.

Beyond that you have to make an educated decision based on your priorities. Radiation and surgery are likely to cure you with equal efficacy. But they meet different needs for different people. If you have a need to "get it out" (which you don't seem to have) or if you want to have certainty about your pathology then surgery could be the right option. But, if you want a better chance of avoiding the onerous sides effects of ED and incontinence then radiation might be a better choice.

Some make the argument that "younger" people should choose surgery because they can tolerate it well and have a better chance of recovering urinary and erectile function. My perspective is that younger patients should consider radiation because they have a longer runway to live with incontinence and ED if surgery yields that for them. Also, the comment that picking surgery is better since you have radiation as a back up plan is an old chestnut that has been debunked on our forum many times. There are just as many salvage options after a failed radiation treatment as there are after failed surgery.

Also I would suggest you not get hung up on side effects that lie at the end of either curve. The trifecta of importance in my opinion are cure, continence and sexual function. The chances of secondary cancers from radiation, for example, are about the same as the odds of dying on the table during surgery.

Full disclosure, I was a radiation patient with no side effects 12 years post procedure so have some natural bias in that direction.

Good luck and let us know how we may help.

Jim

P.S. If you are seriously going to consider radiation, then it's not just a "radiation guy" you need to see. These docs specialize so it would behoove you to seek out experts in LDR Brachy, HDR Brachy and SBRT as well as those who understand standard EBRT.

Bob, Glad you’re researching your options and willing to make an informed decision. If the first treatment fails either RP or RT the next step is radiation in some form. Don’t be misled that RT reduces your options. Every treatment including AS comes with risks. If your urinary function is good today in my opinion RP offers little practical advantage. You already know you have PC and either RT or RP is likely to offer a cure. When I made my choice I focused on the side effects of each and what I was willing to accept for the long term. I too would recommend getting a second opinion from Epstein. It might be the best $200 you’ve ever spent. I got my second and third biopsy confirmation checks from Cleveland Clinic; Epstein is the gold standard. I would also spend some time understanding the graphs on Prostate Cancer Free. It’s a great place for comparing the success of different treatment options and also led me to more technical research information. No matter what treatment you find best for your situation I always tell people to seek out the best practitioner and team that you can. You want this first choice to be the best. Good luck and keep asking and posting us on progress.

I just wanted to add a few things but you've have already received a lot of great advice already. I am a 4+5=9 Gleason, Grade 5, still actively involved as we speak in the EBRT portion of a Triple Play with HDR Brachy. Today was EBRT treatment #5. I was actually where you are now just back in Jan./Feb. fraught with fear of dying and a uncertainty where to turn. A RO called my situation...a "bad cancer" and I best make a treatment decision right away." To make a long story short, I really had only two options...Removal or Triple Play (ADT + HDRB + EBRT. I did a lot of research and went to a lot of Forums to find out what other survivors had experienced and why they picked the treatment they did. It was eye-opening and very educational. What I come to realize after only a few weeks of doing serious due diligence is that the end point survival rate is about the same for high risk cancer patients be going with either Removal or Triple Play.......so they that left me with the decision #2 - side effects. It appeared from most all accounts there were less side effects associated with Triple Play over Removal despite being on 18 months of ADT. I signed off on Triple Play. I am not far enough down the road yet to offer as much insight as others here - by any stretch of the imagination - but I can say I was confident and comfortable in my decision to go with Triple Play therapy and my side effects (so far) have not been as bad as some others have reported, but I am still in the processing. My EBRT is scheduled to be completed May 29th. I wish you well in your decision-making process. Do a lot due diligence communicating with others (most importantly) and it will serve you well.

I have nothing to add except to wish you good luck in treatment. Also, is it hype or are the donuts really great at Voodoo Doughnut?

PDXBob, wish i could add some magic advice to whats already been said, but so much good advice has already been given that i cant. I would emphasize as others have, the importance of that second opinion on the biopsy slides.
My one comment i think, would be an observation....seems like you have, with 6 of 12 positives, a fair amount of cancer "down there". That, combined with the one core that is g7(4+3) assuming that holds if you get the Epstein second opinion) would prompt me to be careful, dilligent, and thorough in my research towards a decision, but do so without wasting too much time. Not saying you dont have a few months, but you definitely houldnt wait, in my opinion, too much longer.

Whatever you choose, do major due dilligence on choosing your practitioner, because choosing a master at his craft to treat you, is as important as deciding what treatment is best.

Good luck, welcome to HW, and glad you found this place.

I have yet to read any study that showed that surgery could match the non-recurrence rates of the two advanced types of radiation, SBRT and protons. Not even close.

“If you do radiation first, you can’t do surgery later” is, in my opinion, a misleading talking point used by urologists to steer men into surgery.

It is misleading because, while it is true that surgery is difficult after radiation, they don’t tell you that there are several proven, salvage treatments in the case of recurrence after primary radiation.

These treatments include cryotherapy, both low and high dose brachytherapy, Cyberknife, High Intensity Focused Ultrasound, and Focal Laser Ablation. Also, salvage surgery is performed by some specialists.
See the summary table attached.

https://prostatecancerinfolink.net/2017/09/05/salvage-focal-ablation-for-radio-recurrent-prostate-cancer/

Hi Bob and welcome to the Forum. I would note for the benefit of others newly diagnosed that with your PSA history and first biopsy results, you were not a good candidates for AS from the outset, as both your subsequent PSA and second biopsy confirmed. You are doing the right thing by carefully investigating your primary-treatment options. There are objective facts regarding treatments, but also subjective considerations. Two men with identical ages, histories, and cancers statuses can arrive at different treatment decisions. This is reflected in the many options your uro presented.

Your imaging should help you and your doc get an idea whether or not your PCa is prostate-confined. IF you decide on a RP, keep in mind that your choice of a highly experienced surgeon with very good continence and potency outcomes is the most important thing you can do to ensure the best outcome for your status. Statistically, larger institutions have better outcomes than smaller ones. I agree with ASAdvocate that SBRT appears to be an excellent RT modality.

All the best!

Djin

Bob, you're more than welcome. At this point: get as much information as you need to make the decision that is right for you....then schedule the treatment (whatever it is) and get it done.

In the end...when you meet your treatment team...you'll know, in your gut, that you're in the right place, with the right team. Hard to believe, but it really does work that way, often.

Keep us posted, and after wards, please stick around and be an encouragement to the next guy who wanders in. Many were here for me 5 1/2 years ago (some are gone), we're here for you.....

PDX Bob,
Kudos to you for being your own best advocate, and really doing the search to find your' best path to a cure. Keep the faith, from a Stage 4, Gl 7 in 80% of one core...in remission for 5 1/2 years!
Wings

PS\ASAdvocate, making your link clickable, thanks!
https://prostatecancerinfolink.net/2017/09/05/salvage-focal-ablation-for-radio-recurrent-prostate-cancer/

PDXBob - This thread by e.noont should give you a good read on his process to go with SBRT

https://www.healingwell.com/community/default.aspx?f=35&m=4122891