First Post...Bear with me.

DaMayor said...
Thank you, Bill! I was actually able to, or made myself get around to, talking with the Father of my previous employee, now friend, who went through this 6 years ago. At the time, he elected to have the (open) radical prostatectomy, as was the advice of his Urologist then.....who was assisted by my current Urologist. Other than the fact that he was 46 when diagnosed, his numbers/stats are very close to my own. In his case, he went through the surgery without much trouble. Incontinence and ED were minimal, (i.e., required a reasonable recovery period without too much negative impact on QOL) and while everyone's case may vary, he did very well.

Now, before everyone tells me to slow down, lol, this doesn't mean that I have decided on anything just yet. It was just encouraging to hear a success story regarding that particular procedure. I am still doing my due diligence, researching, and after a conversation with my wife last night, have decided to get through the scans, talk to my current Urologist at length, ask him more difficult questions (for him) and see what input (or reactions) he has to offer. The way I see it, while he is a very kind man and a reputable Doctor, his responses and reactions will better define his commitment to MY well being, or his. I am also seeking a second opinion, but am not quite sure whether to interview another Uro/Surgeon, a Uro/oncologist, or both...But like you have all said, I have time. Plenty of time.

Now, if you would all like to send my wife an e-mail reiterating this, I would be very appreciative, lol. No, she's been great through all of this. She is just concerned, as am I.

The interview tour is crtical. I'm glad you're confronting your uro with tough questions. My uro told me and I quote, "I know a guy." when he was trying to sell me on surgery. That's a phrase you're good with when you need your car fixed not put your life/future on the line based upon. There's referral kickbacks involved so that's something to keep in mind when you're getting them. Be your own surgeon/radiation seeker. Find the guys in your area or elsewhere with the reputation you're comfortable with.

Anyone who might perform a procedure on you should talk to you personally about your concerns before you commit. I had an opportunity to speak with a well-reputed radiation doc. I ruled him out because he didn't sound confident he could "cure" me. I did the second opinion tour and thanks to a friend I got into see someone that normally took months to see at UT Southwestern in Dallas. He and I went over a number of things...he showed me raw numbers of likelihood of success broken down in percentages (67% I live my life out... 33% I wouldn't) and presented options. I pressed him on what he would do and he said the best bet was to do surgery because you can follow that with radiation if need be but you can't do it the other way around. 2 options to save my life sounded better than one, so I chose surgery. I wish I could go back and do watchful waiting/active surveillance but I was told that was no option.

Also, I don't know if I'm unique in this but I chose to get on a plane and fly 5 states away to have my procedure at Mayo Clinic in Rochester, MN and I live in Texas. I felt in my heart that was what I needed to do. Put ALL options on the table and you'll find peace for one of them.

I don't know if things have changed, but I know after I had my biopsy, it was 6 weeks before they could do surgery. I had surgery on Day 43 post-biopsy. So, when people say you have time you literally have a full 6 weeks unless things have changed since 2013 IF you choose surgery.

I had a similar concern about coverage. My RO did a treatment plan that included widening the treatment area to make sure the margins. The beam RT will cover the whole prostate plus some.

But, thing that will drive you nuts is that there is no clear answer to that question at your risk level. Both with get the job done with the same risk.

Sometimes you just have to go with what you feel is the best treatment for you.
Andrew

DaMayor said...


So I suppose my best option at this point would be to wait until I speak with my Urologist again, hit him with the hard questions and demand real answers.

Not really. Better options are to (1) get your slides read by an expert (e.g. Dr. Epstein's lab) and (2) Get some appointments with radiologists who specialize in treatments that may cure you as well as surgery with potentially fewer side effects. If you only continue to use the same "expert" you will just feed your preconceived bias.

Jim

Thanks Todd!

I think you hit the nail on the head...the "greatest chance of cure" is my primary concern at this point. The side effects, while potentially less than desirable, and yes possibly horrible, are things that I have wrapped my head around, and am willing to accept if need be.
It looks like I will not have to wait until the 18th for my scan results. Instead, I will find out the day after tomorrow. Either way, I will still have to work my way back through all of the information I have been researching. Oddly, in the past week I have run into several past patients of my Urologist. All speak very highly of him, and all have had very positive results. He is where I am hanging up, in very general thoughts/terms:
1.) (open) Radical prostatectomy offers a good chance of "cure", allows for staging, and can be followed by salvage radiation if something goes wrong. Side effects are hard to determine, although I am hoping that my overall health and age will be in my favor. For the guys in my "age-group", with very similar cases, it seems to have helped.
2.) RALP offers similar cure rates to the open rad. pros., but eliminates staging. It still depends on a particular skill level, so is not entirely error free procedure.
2.) Radiation (generally) make future surgery more difficult (not impossible), does not allow staging, and has the same, if not more, side effects. I've read a few reports saying that incontinence and ED may even be higher. However, different sources offer different perspectives.

Again, my concern is this. Given the volume of cancer present (10/12 cores) found during an ultrasound guided biopsy, which is often referred to as "flying blind", I have no way to determine how much of the prostate is truly involved....it may be more for all I know. Right now, its plenty involved, lol. Secondly, while my Gleason numbers are currently and vaguely defined as "6's and 7's", until I know more detailed information I can only plan to address the worst case scenario. All I can determine at this point is that I have a substantial area of my prostate involved, that I am at the lower end of the "intermediate" range of recurrence, and that I don't want to have to go back and forth with this thing over a long period. I know, I know, that sounds anxious. But I am really just ready to face the dragon. I will have more data to consider on Friday. No decision has been made yet......but my "gut" is telling me surgery right now. And I have a pretty well developed gut, lol. Thanks again, guys.

Mayor,

It's great that you trust your urologist--that is vital. However, please do NOT let your urologist explain the benefits or drawbacks of radiation therapies. He's not an expert on those--particularly the newer, higher specialized versions like SBRT.

The non-scientific, non-statistically significant reports of the members here suggest that radiation has no worse--and frequently the same or better (but different) side effect profiles compared to surgery.

You're also repeating the biggest half truth that ALL urologists tell: that surgery after radiation is more difficult, if not impossible. This is true. However, it implies that if radiation fails, then there is nothing more that can be done. Absolutely NOT TRUE.

Not having final staging is a valid concern.....but probably not as big as you think. Many men have had primary radiation that cured them. So, in a sense, does the staging matter?

Mr. Mayor, you've made your decision--that's important. Now, get in shape, eat well, quit smoking (yes, good idea!), and have as much fun with your significant other as you can manage between now and then.

As far as it goes...go with the most experienced, best track record surgeon you can find. Period. Ask how many he's done, and what his personal results profile looks like. That's hugely important.

Get ready, and get it done.

After 30-something years, I quit smoking yesterday. Thus far, no one has been injured and no charges have been filed against me. After feeling slightly irritable, but nothing else, I elected to not use the patches I purchased. So far so good. I guess knowing that the Pc recurrence rate is increased by smoking is a good incentive, eh?

I stopped by to get my path report, and this is the gist of it:

core1-no involvement/benign
core 2- 30%, 7(4+3)
core 3- 60% 7(4+3)
core 4 30% 7 (4+3)
core 5-10% 6 (3+3)
core 6- 10% 6 (3+3)
core 7- benign
core 8- 50% 7 (4+3), PNI noted
core 9- 90% 7 (4+3)
core 10- 40% 7 (4+3), PNI noted
core 11- 80% 6 (3+3)
core 12- 40% 6 (3+3)


So, I'm still thinking surgery is not a terrible idea. But your thoughts are always welcomed!

Note that i was 12/12 cores positive and G6 and G7 throughout. Three surgeons said no surgery. I used HDR Brachytherapy and IMRT. This is far better than surgery as it covers a greater area than surgery. I am sure your surgeon has explained this to you, right? I am also sure that your surgeon has also run nomograms and shared them with you showing that you have a significant probability of also needing radiation on top of the surgery, right. And never let a surgeon tell you about radiation therapy. You must get the information from the specialist. And never go into this without your slides being read by either Epstein or Bostwick. They are the confirmed best at this and you should take full advantage befiore deciding on the treatment method.

Note that I am cancer free and side effects free after eight years. The combination of radiation methods served me far better than surgery would have. In my opinion, you are not ready to make such an important decision. You have more work to as so many here have advised you.

DaMayor,

Your Uro is not qualified to speak about RT with, or without, bias. He is surgeon.

You have some high volumes in many of your cores. Did the Uro talk about how wide of cut he needs to take? Can he avoid your nerves? Is sexual function important to you?

Your Uro seems to be emphasizing that salvage radiation can get what he misses. So, is he already assuming he can’t cut it all out? If so, why not just get it all with RT in the first place?

I think there is a tendency for people to believe that surgery is better because it’s easier to understand. You just cut the dammed thing out. Radiation is sort of mysterious for most of us. It was for me. Really though, radiation can get to where the knife can’t go.

It’s your decision, but as another poster pointed out, you haven’t really done your homework.

Good luck with whatever choice you make.

One question I have concerning the nomogram is the prediction of extracapsular extension. If (my) very recent CT and bone scans show no evidence that the cancer has moved beyond the prostate, then how can the nomogram predict such a high probability of metastasis?

You have made your choice now don’t waiver. There is an element of luck involved in any of the choices you make you have to hope it’s in your favor. You made the first good choice of quitting smoking , you have to get healthy now and start your kaegels a month before surgery.

The most important decision with surgeory is the choice of surgeon- chose wisely and chose one who has had a great track record. At this point nothing else if more imortant. Do your research . Good luck 👍🏼

DaMayor:

You have spent a great deal of time here on HW, which is great. You are getting some great input from knowledgeable folks who have walked the path. That's good, too.
But why are you totally ignoring the two most crucial inputs?
You are dwelling on the biopsy report. But you absolutely should get a second opinion from Epstein at Hopkins. Spend some of your time to google that. You will find very clear instructions on how to do that. It is very simple. Then at least you will know what you're dealing with. We have seen plenty of mistakes in biopsy reports.

Also, surgery might be a very good option, but maybe not. At least speak to 1 or 2 radiation oncologists. Your urologist is a surgeon and probably has a bias that way. Getting more information on radiation is helpful. I know this is terribly stressful, but in the long run being more educated will help you relax and be more confident in your decision.

Note that I am not advocating radiation. I am advocating you getting more input from experts in the field.

Mel

Add my voice to those urging you to send your biopsy slides to Epsteins lab at Johns Hopkins. If some of those cores come back higher it may change what you want to do. If they dont change then you can rest assured you made your decision on the best info possible.

I had talked to surgeons and radiologists back in the summer and decided on surgery, but hadnt sent my slides to Epstein, because I hadnt read these forumns yet and didnt know to ask for that. I then asked my urologist to send them off for my own piece of mind, even though I had a date set with the surgeon in the fall. I figured I could cancel if they came back different and I wanted to go a different route.

Turns out they came back from Epstien spot on with the first report, so I was able to rest easier knowing I had made the right decision. and I went ahead with surgery in November.