The orphan picnic

So my dad sometimes tells the joke about the kid who did away with both his parents just so he could go to the orphan picnic...ok, not funny...but I feel a little bit like that about this forum.

Just back from my urologist's office - sorry to report I have officially joined your ranks. To paraphrase Groucho Marx: "I wouldn't want to belong to any club that would have me as a member" - but unfortunately, you're stuck with me, at least for the time being. My signature tells the story.

Turns out my Uro is an artist on the DaVinci machine (Dr. Kia Michel at Cedars-Sinai - over 1000 procedures) - super confident he can get everything out - very confident he can spare the nerves on one side, wants to be slightly less aggressive (but still careful) on the other (owing to the possibility of extra-capsular extension on that side). He talks about his skills like he is a rock star - just what you want to hear.

Because of the Gleason 7, I'm scheduled for Bone and CAT scans on Tuesday - both in one day (bone scan in the AM, CAT in the PM) - and just for good measure, I'm seeing his favorite Radiation Oncologist on Monday. Feeling optimistic about what we'll find, but better safe etc.

Uro is absolutely advocating for surgery - we have a tentative date of June 3rd scheduled. I might postpone slightly owing to work commitments - it's complicated and I need to think it through. He has an aggressive plan both before and after surgery for regaining continence and preventing ED - I promised him I'd be the best patient he ever saw - and I meant it. I plan to kick this crap to the curb - and kick it hard.

My wife and I sat with him for an hour - we went through everything carefully, and he patiently answered all of the questions on my checklists (thanks guys). He told me several times that he thought my attitude was awesome - I owe a lot of that to the research I did, and to the optimist and courage I've seen here on this site. Very grateful. We have another appointment scheduled for next Wednesday to go over the next wave of test results and discuss any concerns that might come up between now and then.

My wife is devastated, but bearing up ok. I'm ok - not surprised by the Dx, but I imagine at some point I'll have some kind of delayed reaction. Mostly, I'm relieved to know what is happening, and to begin putting a plan in place.

I suggested that my wife create a screen name and join the conversation here - I thought it would be cool to be a team - so look for her at some point.

That's all for now - would love to know what you guys think. Anything I should be doing that I haven't already mentioned?

Thanks in advance -

Brother Doug

Doug, there are many wives here they ask questions and they give advise. We would love to have her join us. Usually the wife will pick a name that would tie herself to your screen name. Best of luck.

Cajun Jeff

Doug,

Looks to me like you're getting off on the right path for your journey.  I'm a surgery guy, so I can't dispute your choices.  You sound like you have a great doctor and he has a plan in place, so take a deep breath and be as confident as you can that you will get through this.  Every singe person in the world faces the same end--there are no exceptions and it takes no talent to get there.  Living is the thing that takes effort or you are merely existing.  I have no doubt that you will beat this thing and continue to have a life worth living.

P.S.  As a former teacher of 8th graders for 33 years, I liked your opening "joke".  But then middle school teachers are a twisted group by nature.

Best wishes to you,

Tom

Doug,

I am or was a G7 guy who chose surgery. I was fully continent after 3 weeks and still am. The ED is bad but so was my old yucky prostate, 60% of it was tumor and fortunately all organ contained. I had the local rock star Da Vinci surgeon in Alabama with over 800 under his belt. I had my biopsy 2 years ago today and surgery the first week of June. I am doing great with undectable PSA.

Terry

Hey tatt2 - many thanks for the links - I will pass them on to my wife - and I agree that all of our spouses (regardless of gender) need as much support as we do, especially considering we're not always going to be able to give it to them ourselves. My wife and I are talking a lot about what her support team is going to look like - strikes me as a very good conversation to have.

Doug, so sorry to hear the news, but you sound like you're bearing up well, based on your joke. (BTW, I think it was originally said by Groucho Marx, not Woody Allen.)

While surgery could indeed be the right path for you and your guy sounds great, one would expect a DaVinci whiz to recommend DaVinci surgery. My uro is the South Bay DaVinci whiz and he recommended robotic surgery for me.

But given that there are no do overs on initial treatments, I think you owe it to yourself to seek out additional opinions--preferably from someone that is not a DaVinci surgeon. Here in LA you have two great choices in Dr. Mark Scholz and Dr. Richard Lam, both at Prostate Oncology Specialists in Marina del Rey. (In my first post on HW asking what I should do, one of the first replies was that since I live in LA it was a "no brainer" to see Dr. Scholz or Dr. Lam.)

I ended up with Dr. Lam and felt like I got some great advice from someone that was "treatment neutral." He spent a ton of time with me, both in terms of building a profile for my cancer and in going over the pros and cons of various treatments. This sounds weird to say, but my initial consultation with him was the best doctor's appointment I have had in my life.

Good luck!

Michael

Hi Doug,

It can be very re-affirming to get a surgery recommendation from an RO. And it sounds like she was both thorough and thoughtful, which is great.

If you do decide to try and schedule an appointment with Dr Scholz or Lam (and I still recommend it), I would give a call and try to set it up now. When I first scheduled, there was about a month wait to get an appointment. I managed to get in sooner due to a cancellation, but the original timeframe was not consistent with my timeframe for making a treatment decision. Hopefully, there's a shorter wait right now...

Michael

Hi Doug, thanks for keeping us updated and also a big congrats for the manner with which you are approaching this! If you decide on the robotic surgery route it sounds like you've got that covered by someone that is very, very capable, so that's good to have in your pocket.

Regarding the visit with the RO - in your original post in this thread you mentioned that "I'm seeing his (your surgeon's) favorite Radiation Oncologist on Monday." I would echo Tall Allen's point about at the very least understanding that kind of recommendation for a 2nd opinion. . . .

I in fact actually lived that one during that part of my journey; after meeting with the head of urology at Froedtert & The Medical College of Wisconsin here in my neck of the woods (similar accreditations as the Mayo), who suggested surgery and only open as that what he does. Next I followed that up with another consultation a week later, with the head of radiation - also at Froedtert. She told me that she would recommend surgery as well, and in fact before I could ask she warmly looked at my wife and I and stated "If you were my brother, I would recommend surgery." I'm not sure what it was but man, a light bulb went off and I back out of there as soon as my consultation was over. . . . Based on all of my research and fact-finding, and studying the various modalitie's results, it originally made no sense to me why the head of radiation would recommend surgery - until I connected all the dots.

I too would then encourage you to follow up with an appointment with Dr Scholz or Dr Lam, just to get that "seperation of interests." Please don't misenterpret my post as talking you out of surgery - absolutely not for me to say, way too personal and important of a decision for anyone else but you and your wife to make! And, as I started my post with, sounds like you've got a very skilled Dr in your pocket so that's a plus.

It's just that I can relate directly to getting a referal to someone who may (or may not) have a connection. . . . and, had I left it there and not met with experts in radiation therapy with no connections I would never have gotten the added perspective that I did.

Continued best to you!

My uro recommended surgery, I went for a second opinion with a facility that provides both radiation and surgery. The urology oncologist there also recommended surgery. I thought I would get an unbiased opinion, but he was very confident surgery was the way to go, followed by radiation. I did not want to endure 2 major treatment methods.

What I found out was that based on my stats, I was not a good surgical candidate. While it may be a good choice for you?

I would seek an independent consult with a radiation oncologist who specializes in prostate cancer, then sit back and look at all the pros and cons of each, then make a decision.

You get one chance to do this

Hey guys - I really hear you about getting some "unbiased" opinions - that is definitely still on my to-do list before I decide on a course of treatment. Many thanks for continuing to remind me how important that is...Doug

I've got that glowing feeling today - a radioactive glow, that is. Waiting to have my bone scan in a few minutes - CT scan tonite. Could use to radiate with a few more good vibes today...so send 'em my way...!

Good news (amazing how one's definition of good news changes after a cancer diagnosis): my bone and CT scans were negative - what a relief.

I've tentatively scheduled surgery for July 1st - decided to wait until the conclusion of my current work commitment, with my doctor's approval. In the interim, I'll seek some other opinions (probably by phone, as I will be overseas for a couple of months in the interim) - but based on my age and stats, I'm definitely leaning towards surgery at this point.

I've also got a couple of Pelvic Floor Rehab sessions scheduled before I leave the country, so I can get the kegel technique down, etc - I really want to do what I can to stay ahead of the incontinence even before the surgery - couldn't hurt, anyway.

So glad to be past this particular hurdle - can't imagine this ever gets easier. Having to contemplate the possibility of having that particular version of the disease was not fun - I really feel for the guys (and their families) who are dealing with that brand of PCa - my heart goes out to you if you're reading this.

So now I'm poised and ready to fight the fight - I plan to kick this cancer crap to the curb...!

Doug