Hello and ....I'm Frick'n Scared

Michael_T said...
Dennie...can I assume that Friday's biopsy report was the second opinion from Johns Hopkins? And that they confirmed the G8 diagnosis from what I can tell?

Where do you stand with meeting with a surgeon and radiation oncologists? I tried to take a quick look back over the thread, but didn't see that info yet. You do know that G8 cancer is still curable, right?

Michael: No, this was original biopsy from my Urologist. I'm still waiting for the slides to be shipped to JH for analysis.
I meet with my Urologist (surgeon) on the 15th of June. His office is scheduling me for the scans, etc before our meeting.
Yes, I do understand that it is curable....but sure wish it was a 3+3 or lower (of course) but I guess we play the hand that we are dealt.
Just dealing with it one day at a time....and appreciate what this board has done for me (and getting drunk from how much information there is out there on the subject)
Thank you again for all everybody does.
<Dennie>

Dennie, that's certainly not the best biopsy report, but it's also far from the worst. Gleason 8 puts you in the high-risk group, but that still is very treatable. (I'm doing very well four years after finishing my treatment.)

I'm sure you realize that your treatment options include surgery and several types of radiation, whether it be external beam or brachytherapy. Radiation would likely include hormone therapy. Do you have any leads on doctors to talk with? Treatments are specialized, which generally requires seeing someone that specializes in that particular treatment.

Dennie M. I signed up tonight just so I could share some information with you since you are in Texas. I don't have time to post all the information regarding my husband, I will do that later. He had da Vinci Robotic Prostatectomy Surgery last August in Lubbock, Texas. Dr. Girish Vallabhan. We understand Dr. Vallabhan spent a full year in training at John Hopkins on the da Vinci machine. Very likable Dr. and we feel very capable. The first Urologist we saw quickly referred us to him. We drive 100 miles to see the specialists.

Hubby isn't a youngster and is dealing with Chronic Pain from 3 failed back surgeries and recently had a pain pump installed so we did not deal with the prostate problem as soon as we might have otherwise. He was intermediate risk. PSA tests since surgery have been .05 and I will put all information on later. But when we were at the Covenant Hospital for the surgery one of the "Pink Ladies" told me her husband had GS 9 two years prior and Dr. Vallabhan did his surgery and he was doing well. The doctor has received numerous awards.

This is the link to their web site and there is a short video with Dr. Vallabhan talking about the machine. I believe his dad was associated with Texas Tech and he was raised in Lubbock. He has that same West Texas accent. http://www.lubbockurology.com/procedures/da-vinci-robotic-prostatectomy

Dennie...unless you get a medical oncologist that specializes in prostate cancer (few and far between), you should be looking at radiation oncologists and urologists at this point. Presumably, you have a urologist now that did your biopsy. As you likely know, urologists are surgeons by training. Radiation oncologists practice different types of radiation, such as brachy vs SBRT. I think you can start lining up those appointments while you wait for your second opinion.

Dennie, One question--did you even consider any of the radiation options or have any consults with one or more radiation oncologists? In the name of being complete in your assessments, that is strongly recommended.

For surgery, did your surgeon tell you how many he's done, what his personal success rate is? The best outcomes do come from highly experienced surgeons who have done thousands of them.

As you prepare for surgery, make sure you eat healthy, start walking-if you can, do several miles a day. Learn how to do kegal exercises, and do several sets of 10-15 reps a day. Embrace life--you've got a long future of good health in front of you. And, have lots of sex. That is definitely going to change afterwards.

I did consider the radiation options and decided, after much research, that (1) the daily trips (x100 miles round trip) x 9 weeks or so (4500 miles) will exhaust my wife and I, and (2) I have read and also spoke to my urologist concerning it, that if you have the surgery first and then need salvage radiation it's much more successful than if you have the radiation and then have to have the surgery, due to the scar tissue that the radiation might cause.
The tissue samples are on the way/at Dr. Epstein's now. From what I've read, the second opinion readings change only about 5% of the time.
I've done research on the surgeon that I'm going to see and he has done thousands of these procedures and online he has great reviews. I feel confident to put myself in his hands.
All in all, with research and discussion, my wife and I have decided that surgery is the most viable option. With robotic surgery it appears that I will be able to get on with my life with the least amount of issues.
Thank you all.
<Dennie>

Post Edited (Dennie M.) : 6/15/2018 9:51:57 AM (GMT-6)

Dennie, I hope you don't think we are trying to talk you into or out of anything. But you are clearly seeing a common theme here from both surgery and radiation patients. And that is a hope that you will do your homework. That means more than just taking your urologist's word and doing internet research. For example, the implication that you can do radiation after surgery but not vice versa omits valuable data, i.e. that there are excellent options for salvage after failed radiation just as there are options for salvage after failed surgery. An in depth discussion with an experienced RO would clarify that for you.

Most of the men here who don't have any treatment regret regardless of their choice are the ones who did their homework and consulted personally with various doctors in different disciplines. We are simply encouraging you to follow that path. If you choose not to do so that is certainly your option and ultimately we will wish you well whatever your choice.

Iim

Good path report. congratulations!

Great report! Doesn't get much better.

Nice having the catheter out isn't it!
Andrew

Oh yeah, didn't mind at all saying goodbye to Mr. Foley.
Was a....how can I phrase it.....UNIQUE experience when the nurse removed it.
Of course she wanted to see if everything was working right so she injected the fluid into my bladder and then very little came out. She was thinking that they might have to put in another catheter.
I then stood up...and "thar she blows". Water all over the floor but the amount that was needed so no need another catheter. WHEW!!!
<Dennie>

Post Edited (Dennie M.) : 7/25/2018 4:08:11 PM (GMT-6)

Congratulations on the great path report and decisiveness in your treatment choice.

Great report Dennie! Keep up the walking and exercising and here's hoping to undetectable psa's for life!!

Larry

Dennie, I'm happy for your great path report and wish you well in your recovery.

Jim