New club member...i think. From Diagnosis to SBRT.

Outstanding research and gathering multiple opinions! I think you're quite capable choosing what's best for you, but I like the way you're leaning.

Sounds like the Uro's DRE was a lot of fun. I suppose if a practitioner grinds hard enough, it's easier to imagine there's a nodule somewhere.😉

Great job of getting multiple opinions as you make a treatment decision! While we all advocate that approach here, the downside is that it can make the decision even more difficult to make. I'd be a bit concerned about the "cut wide" uro since that pretty much guarantees the greatest SEs. At the same time, I would hope he doesn't make that decision lightly--did the RO address his T2B diagnosis since you saw the RO after the uro?

In terms of my own personal decision making, radiation "felt right" for me--I just thought there was too much of a chance that surgery on its own would not be curative. But I've also seen lots of guys here where surgery felt right for them. Folks understandably seem to gravitate where they're most comfortable.

Thanks for the supportive comments.

As far as the DRE by the Uro. I do have what other examiner's describe as a small nodule on my prostate. I have no idea what this Uro was feeling, but the exam seemed to be trying to determine if any abnormality had spread across to the right side.

I do have another inquiry out to "Tall Allen". He made a very thorough response to my initial query about my diagnosis. I'm sure his advocacy for SBRT has influenced my leanings so far. Being aware of this bias, I have looked extensively for information against this form of treatment. I'm not finding much fact-based info, only anecdotal.

I didn't mention the Uro's T2b clinical staging to the RO. At the time, I thought it best to let each examiner give me their opinion without the possible influence of any conflicting findings from one their work partners.

Mumbo,
Duke did not do another MRI or review my initial local MRI. The Uro's comments were in response to mine indicating that there weren't any abnormal findings on my local MRI. He was basically discounting the validity of my MRI in favor of one that Duke would do. At the time, it occurred to me that if there was concern that disease had spread beyond the gland, we should do more testing/imaging to confirm this before jumping straight to surgery. Since that comment would likely seem adversarial and a challenge to the recommendation for surgery, I elected to remain silent. I went into these consultations believing that these professionals could provide me with insight that I might not otherwise consider or agree with. Once complete, I would then evaluate all the information and make the decision that seems best for me. I'm not going to tell you that I didn't have an emotional response to the comments...I did. For me, one of the benefits of aging is that I learned not to make decisions or respond verbally when my "buttons get pushed." I'll make a better decision later when I've had time to consider the facts without the emotion.

e.noont - thanks for the MRI explanation, makes a lot more sense now.

It is good to sit back and reflect on what the doctors tell you, also good to have spouse or friend with you to discuss meetings afterwards. I definitely heard some things differently than my wife that I had to sort out when we got home. Doctor's personalities are all over the place like people in general and surgeons can be the worst sometimes. You want the best possible surgeon if you go that way but the best surgeons sometimes have curt and abrasive personalities, especially if you challenge them.

Your treatment quandary is similar to how mine was in many ways. My MRI was pretty clear that the main lesion was at the boundary but the surgeons were confident that they could work around it. My RO recommended IGRT or SBRT but did not dismiss surgery as an option. My signature shows that things got a little more complicated after that but that's the way it goes sometimes.

I went through RALP and 37 treatments of IGRT adjuvant therapy. Surgery is more traumatic and immediate whereas with radiation you are always waiting for the other shoe to drop, if it ever does. There are all sorts of testimonials of the good and bad consequences of treatment options that only you can sort through and decide.

I will never know if surgery solved the problem alone but wanted the best possible odds for the future with ART due to post surgery pathology. I have been lucky with minimal side effects from surgery and radiation so far. Knowing what I know after surgery, I would probably gone with a different treatment plan but hindsight is not all that helpful. Having the actual prostate to analyze fills in a lot of missing pieces but requires a surgery to find that out. You just have to play the cards as you see them at the time and hope that the side effect dice rolls in your favor.

We go to the Uro's on Monday morning and I get to tell him I'm going with radio-therapy. While I acknowledge the advantages that surgery has or may have, it just doesn't fit me. Because of my Oncotype test, my only remaining concern at this point is where I'm really at on the favorable-intermediate continuum. I continue to learn about the genomic classifier and a limited study that seems to do a better job than the NCCN risk stratification tables on predicting who is less likely to get a cure from the standardized treatment modalities. From my perspective, being able to determine whose disease is possibly more aggressive (based on genomic testing) than a biopsy can indicate, could increase survival rates. Both my local Uro and RO have spoken about the possibility of combo therapy for me and the NCCN guidelines released in April also acknowledge it based on gene testing. This is probably my last attempt to "leave no stone unturned". I have yet to talk with a local Medical Oncologist and I'm really ready to set a start-date for treatment. I've also sent my Oncotype and JH test results to the Duke MO for their opinion. I have absolutely no particular desire go through a short course of ADT but will consider it if expected benefits exceed potential side effects. I'm planning on going with SBRT.

SBRT is a good option for you.

Keep us updated on your progress.
Andrew

I have to say that it really is comforting to have the hindsight and introspective thoughts from you guys. I have a tendency to espouse only the technical aspects of my thought processes and need to have a real world reality check periodically. I feel as though my research is nearly complete and that is comforting. My wife has been the best partner through all this. She has asked from the beginning that I share as much information as possible and I have to say that the technical jargon coming from her when we have discussions is impressive. She always takes the notes at the meetings and will also remember many things that I don't or have a different interpretation. So, a few more answers to a few questions and we can hit the "go" button.

I'll let you know how next week goes.

e.noont said...
I also asked the doctor what percentage of post surgical path reports result in a Gleason upgrade. He said it is as high as 25% in some locations, which is a higher number than I’ve found so far. I feel the worst for those that choose surgery as their one and done, only to have to go to radiation right away based on post surgical findings.

Enoont, I've been lurking on this thread as others have already given very good advice, but I thought I would just chime in on one of your observations, noting that you are keen on SBRT vs surgery. It's true that there are a high level of Gleason upgrades after surgery (and a significant but lower number of downgrades). Many of these upgrades result in secondary radiation. Biopsies are by their nature imprecise.

If a pre-treatment diagnosis such as yours (MRI, DRE etc) indicates that focal treatment would be curative, both surgery and SBRT are excellent and equivalent choices in terms of cure. In surgery, because a pathologist examines the prostate, immediate adjuvant radiation can be applied if there is averse pathology that indicates high risk disease such as EPE or higher gleason grades.

For low/intermediate risk disease SBRT is a focal therapy and radiation is not normally aimed at the prostate bed. This results in the lower level of rectal and urinary side effects compared to IMRT. However, since you don't have a prostate to examine after SBRT, you have to assume that the initial diagnosis through biopsy was accurate. If there were higher gleason grades or EPE you would be non the wiser and would not know that focal radiation is not enough. Hence those 25% of surgery patients you mention who had upgrades or EPE would go unnoticed in SBRT and reirradiation of the prostate bed would not occur until biochemical recurrence (BCR), which may be a long time. BCR for radiation is defined as nadir PSA + 2.0, which could take a considerable amount of time.

So, while you may feel for those 25% of surgery patients who required adjuvant or salvage radiation after a pathology upgrade, it is possibly even worse or too late for those who had focal radiation and didn't seek secondary treatment until a delayed BCR, whereby the cancer had gone from local to metastatic.

Higher intermediate risk patients e.g., Gleason 4+3, can choose combination therapy which even more spread out than the surgeon cutting wide, such as Brachy Boost, Surgery & adjuvant or even SBRT Boost.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5879839/

Not that I'm suggesting it would be useful in your case

Perhaps I have a wrong or imprecise definition of "focal". I have no doubt that SBRT will treat the whole gland, just as a prostatectomy would remove the whole prostate. However, pathology of the prostate, could determine if follow up radiation to the prostate bed or lymph nodes is necessary, whereas with SBRT, you don't have the prostate, hence, you would only treat the prostate bed on BCR, which may be significantly down the line, compared to adjuvant radiation in surgery.

Perhaps that 5mm margin may be helpful in the case of EPE, but with those 25% of surgery patients that get upgraded, some may have much higher Gleason grades, EPE might have resulted in spread beyond 5mm, or lymph nodes removed show cancer. All reasons for considering adjuvant radiation.

I'm not trying to dissuade you from SBRT. I think its appropriate for you given your diagnosis, analysis and outlook. I'm just commenting on a thought you had in a previous message about those 25% of surgery patients that are upgraded. If all of those patients chose SBRT some may have EPE beyond 5mm, very high gleason grades or cancerous lymph nodes and not be treated for some time.

I think this gets us back to the primary question of "surgery or radiation." I agree that post surgical pathology reports provide valuable information and you are subsequently able to go straight to adjuvant radiation treatment if necessary. But, back to the original issue, all of us usually decide between one of these two primary therapies once diagnosed and your disease level (in my opinion) is principal in making that decision. We know going into this that cure rates are similar between the two therapies. Some individuals want to get the cancer out through surgery as soon as possible and others are comfortable using radiation to manage it over time. There are a lot of good reasons to choose one therapy over another, particularly for the side effects, and some reasons may be purely subjective. Individually, we make the best decision possible based on a desired cure, our comfort levels with the efficacy of the treatment plan, AND THE QUALITY OF LIFE we hope to enjoy post treatment. For me, I look at my overall disease level, the small percentage of pattern 4 disease, the amount of total gland involvement, my Oncotype propensity, the second opinions from a Uro, RO, and MO at a "center of excellence" cancer treatment facility, the results of my 3T MRI that indicate organ containment, a downgrade of all disease outside my ROI from Dr. Jonathan Epstein, my relatively low PSA level, and I'm comfortable with my decision to treat with radiation. Because of my disease level and choice in SBRT, I think I will do better with possible radiation side effects than I would with surgical side effects that start the next day. Again, I empathize with those patients that undergo surgery, those surgical side effects, and then have to go through radiation and those side effects. In my personal, subjective, and non-medical-professional opinion, if your disease level is at the lesser risk half of the scale, you would do yourself a great disservice not to seriously consider radio-therapy as your primary treatment. On the other hand, if I was a high risk patient I might have a totally different treatment plan in mind. There are too many variables within each individual to easily plug one's self into a standardized treatment plan...at least for now.

E.noont. I think you have reasoned this out thoroughly and SBRT is clearly the treatment with the most convenience and fewest immediate side effects, while providing statistically so far, equivalent or better levels of cure to other treatments.

I was drawn to your case because of similarities to mine, not just in the statistics, but in our interaction with the Urologist. From everything I read, I had reasoned that I was in the lesser risk half of the scale. However, like you I was surprised that the Urologist said that "from his experience and judgement", based on the MRI and DRE, there was a 50% chance that the disease was not localized, and that I might need radiation of the prostate bed. The RO on the other hand felt strongly that the disease was capsule contained and that mono therapy would definitely work. As a glass half empty person, that tipped the scale towards surgery as I wasn't comfortable with the fact that a very experienced surgeon reasoned that I might need combo therapy. I wanted to know my pathology precisely.

Weightloss,
I applaud your decision in that I believe each of us has to ultimately settle on a treatment plan that we feel is best for us. I believe you are a great advocate for those that decide on surgery and as you stated, it was important for you to know the exact pathology. Best of luck and continued zeroes!

For me, I pulled the trigger yesterday to start SBRT. Since it had been four months since my last PSA (4.9), I had them draw blood for another one. This morning the RO phoned me at 8AM and told me it had come back at 4.77. I'm even more content now with my decision to pursue monotherapy SBRT. I think the placing of the fiducials, hydrogel, CT and MRI planning sessions will be the worst part. They have a real specific methodology for setting up a patient for SBRT. I'll give details as I go through it.

Post Edited (e.noont) : 7/27/2019 3:57:18 AM (GMT-6)

e.noont, congratulations on your decision for SBRT. May it go smoothly and you have the best possible outcome.

I prefer not to advocate for either surgery or radiation, but might stand up for one or the other when any analysis doesn't make sense to me.