Anxiety - waiting

Geordi—Radiation in the last ten or 15 years has come a long way. Most electron beam radiation today is guided. The risk of secondary cancer from radiation is very low (<1-2%). SBRT is a special subset of EBRT. The cure rates for low risk guys like myself are greater than 95% and long term side effects are typically very mild. For myself I experienced some burning when urinating that mild enough that I didn’t need the Flowmax I had on hand. Most guys on this site report pretty much the same thing. I’ve not come across anyone here having any long term side effects from SBRT when done as a monotherapy. That said, every treatment including active surveillance can have side effects. I elected very early treatment with the expectation that SBRT would cure my cancer without significant side effects and in my case that’s what I’ve experienced 52 months out.

I was very confident my cancer was fully contained based on statistics from several sources including the Parton Tables, Memorial Sloan Kettering, John’s Hopkins, and the Hans tables. They all use actual pathology results from surgery patients and statistics from those patients biopsy results to predict the likelihood of cancer containment. You simply add information like Gleason score, PSA, the number of positive cores, prostate size, etc. to get a statistical prediction. For me I had only three cores of Gleason six and a PSA under ten so we were very confident my cancer was local.

Surgery does have the advantage of getting a pathology on what they found. I already knew I had a relatively small amount of cancer most likely fully contained based on biopsy so the pathology was unlikely to provide any new or additional information. In addition radiation not only hits the prostate but can be directed to areas near to the prostate if the Radiation Oncologists feels it’s necessary. Radiation is very damaging to the DNA of the cancer cells and they die over time. Healthy tissue including nerves appear less effected. I’m not a Doctor and I can really only say the whole process for me was very effective regarding cancer control without a negative effect on urinary or sexual function. It’s my opinion that this type of radiation treatment is only getting better with the use of SpaceOar and experience and I expect more guys to choose it as an option over IGRT. Terry

SUM—Yes thanks. You are right with any biopsy you sample only a small portion of the prostate and with additional biopsy you get more information. I was relying on statistics to suggest confidence that my cancer was most likely contained. Thanks Terry.

My lay opinion is that you aren't a good AS candidate: 4 positive cores, two 3+4, and if the core are on distributed in both the right and left lobe, that would be a third point against AS. A fouth is a PSA over 10, which would get you kicked off most AS protocols.

Djin

My feeling would be if you got a downgrade on the G7s from Epstein (sort of like pulling an inside straight), then AS would be on the table. While unlikely, I wouldn't exclude it at this point. What I do think you have is time--as in several months--to make your treatment decision. I'd be curious what the Decipher results say...

Good thoughts. I remember your Mayo suggestion. It’s not a bad drive. An hour and 20 min from my house. I am fortunate to be so close to such great resources and to have insurance coverage for it. Thanks for sharing your observations.

Geordi—From my signature you can see I’m a fan of early diagnosis and early treatment. I’m also a fan of seeking out the best practitioner and team you can find and an 90 minute drive to get the best is a no brainer.

Thanks Terry and Cyclone. I have my appointment in the same building on 7th floor with Dr. Mathew Tollefson in 3 weeks.

Thanks for this. Thinking of a bed-and-breakfast in Rochester for when I’m in the hospital having surgery for my wife.

Hello, the urologist that I worked with a Minnesota Urology is recommending laparoscopic robotic and nerve sparing surgery. He threw out a ton of statistics on side effects and the not positive results from surgery and radiation treatment. His bottom line was that surgically he can fix things that come up (if surgery is the choice) but that if other treatments were used that nothing more could be done to mitigate the side effects from a surgical perspective. I could not tell if the numbers he was providing were national statistics or based on his experience with his patients. I asked him that and he side stepped the question about the men he has performed surgery on stating that "he keeps track of that." Someone else suggested that if you have had a less than positive experience that you typically would switch urologists and so that any given urologist would likely have a pretty positive data base of results for the men that they have performed surgery on because the men with the bad results would have moved on to a different doctor. Any thoughts on this? I know I threw out a lot. I'm trying to evaluate everything in advance of my appointment at the Mayo Clinic on November 15th. BTW--does anyone have an opinion on the new book The Prostate Cancer Handbook? It seems less informative although newer than Dr. Walsh's book on Surviving Prostate Cancer.

Although the terminology sounds a bit off ("mitigate side effects from a surgical perspective"), I think he may be saying that if you have radiation and it doesn't get all the cancer, he can't really do surgery afterwards as a secondary treatment. If that is indeed what he's saying, it's true, but it's also not particularly relevant. First, with your diagnosis, radiation and surgery have roughly an equal chance of curing you. And both treatments give you options if they fail--it's just that surgery isn't a back-up for radiation. But I'd encourage you to focus on one-and-done while making your treatment decision since that's your most likely outcome.

Surgery is certainly a valid option for you, but have you lined up any consults with radiation oncologists yet for their opinion? I couldn't tell if that was happening at Mayo or not. Also, any progress with the second opinion on the biopsy slides?

Mumbo, Michael and Terry, thanks for your replies. I'll be honest, my mother-in-law just died and I have not been able to do much in this sphere. I have been waiting for my Mayo Clinic consultation on November 15th. I'm waiting for my Minnesota Urology Uro results of the genetic tests on the biopsy samples. This was proposed by my Urologist to see how "revved" up the cells are and whether Active Surveillance is a real possibility (I'm not leaning that way right now). I know that some very knowledgeable (and passionate men on this forum) strongly recommend a second pathology opinion from Dr. Epstein. I mentioned that to my guy and he said that his pathologist (Dr. Randolph Peterson) is as good as any--based on the results of prostate pathology in comparison with his pre-surgery Gleason score assessment. My questions are: 1. Wouldn't Mayo Clinic's pathologist provide a second opinion? 2. Would Dr. Epstein's second opinion be superior? 3. I'll admit that I have the let sleeping dogs lie feeling right now and I'm not looking for more bad news but I know that is my fearful/naive side speaking. But I do wonder what Dr. Epstein would provide? I'm thinking of three possibilities: 1. A higher Gleason score 2. Confirmation. or 3. A lower Gleason score. Help me here. Thanks.

Thank you Michael.