Nearing Decision Point

This is my second post, so thanks to all of you who answered my last one.

Just to recap:

I’m 64, very active, trim, non-smoker, very light drinker. No related cancer in family. Two years ago my internist found a trace of blood in my urine and sent me to a urologist. Blood issue has subsequently gone away and at that time digital exam was normal with a slowly rising PSA over time (3.86 in 2016). I decided to see a different urologist in October for my 2017 check-up and he found some irregularities in a digital exam and performed a biopsy. My PSA is now 4.0. Biopsy found: Adenocarcinoma, Gleason of 7 (4+3), 6 of 12 cores positive. I’m working with Memorial Sloan Kettering (MSK) and have a urology oncologist / surgeon. MSK reviewed the slides and came back with nearly identical results.

I just got back the results of my MRI which found:
Prostate size (volume) = 32 cc
.9 cc lesion
4.0 PI-RADS score
I'm told that the cancer is contained to the gland (thank heaven)

I also had a PET Scan which did not provide any additional data.

The week of 12/18 I'll be meeting with my MSK surgeon and, separately, with a RO. In anticipation, I've
already begun to do the Kegels. I also do yoga. I follow your posts and am aware of the issues related to ED and incontinence. (yuck)

It seems that it is likely to come down to daVinci surgery or some type of radiation such as proton. My friend the trauma surgeon recently had it done by way of daVinci and said he wouldn't do it any other way since the likelihood of recurrence is so low, and, if with radiation there is a recurrence, long term survival is unlikely. He also told me something interesting... an MRI will not definitively show whether the cancer has spread beyond the gland. The only way to get conclusive information is by way of a biopsy of the surrounding tissue / nodes that is normally done as part of the RP.

So my questions to you the "experts" are:

1) From what I've presented, do you think that RP is the way to go?
2) Are there important questions I should ask the MD's that are less obvious?
(Yes, I've reviewed the "long-running threads.")
For instance: "My friend told me that the penis is shortened as a result
of RP; Is that the case?"
3) Viagra (sildenafil citrate) vs. Cialis? Do you guys have any recommendations?
One is cheap, the other expensive. Are the results the same? How long do you
need to take it?
4) Other considerations, recommendations?
Stock up on Depends? etc.

Thanks

---------------------------------------------------
LeonardR
Age: 64, 64 at DX
PSA: 2.1 12/12, 3.1 12/13, 3.4 7/14, 3.2 11/14, 3.7 11/15, 3.86 10/16, 4.0 9/17
Gleason 4+3
Stage T1c
6 out of 12 cores positive
No treatment yet

Leonard,

It sounds like you're asking the right questions and are tied in to a top end institution for your process...it doesn't get any better than MSK.

I'm a 'surgery guy', and I've had a great outcome. That being said, I'd encourage you to keep an open mind about the radiation options. With your stats, either radiation or surgery is likely to be curative, with a very low probability of recurrence. Since you're dealing with MSK, take a look at their nomograms, and you'll probably find that either way, your likelyhood of recurrence is very low.

Penis shortening is one of those things. Some guys swear it's real, others (like me) don't notice any significant difference...except in cold weather...the 'turtle head' thing is way more pronounced than before.

I used cialis for a while...here recently I ran out and didn't renew my scrip, and everything is fine without it. I did 5 mg per day for a while...then went down to 2.5 mg a day...and now I have some for 'special occasions'.....

From what I've read and discussed with my MD Anderson urologist, it's a tossup between surgery and radiation, both have similar outcomes.

LeonardR-

You are way too early into this to make up your mind about anything. Do yourself a favor and decide not to decide. That stance will will make you more receptive to information. Every time you make a decision, even a provisional one, you set yourself up for confirmation bias. Give yourself 3 months, meet with specialists, and then decide.

Along the way you will collect all kinds of misinformation (as you have already gotten) as well as good information (as you have already gotten). Trust specialists only for their own specialty - they really are mostly clueless about other specialties (although that won't stop them from expressing a strong opinion).

First, I agree with your surgeon friend that an MRI is really not very good at staging - only a 57% chance that it will be correct - not much better than a coin flip. Clinical stage should be based on the DRE only. If he felt "some irregularities in the digital exam," and it was small and on one side only, it is stage T2a (not T1c). The way to get an educated guess as to whether it's contained is the MSK nomogram:

/www.mskcc.org/nomograms/prostate/pre_op

This is not just my opinion, here's a study that found it is statistically true that MRI does not add to staging accuracy:

www.goldjournal.net/article/S0090-4295(17)31247-5/fulltext

Ok - now you know the statistical odds that surgery will be curative. I would guess the odds are about 50%. This
is where your surgeon friend was totally mistaken. On to radiation...

For your unfavorable intermediate risk prostate cancer, brachy boost therapy has the best odds of curing your cancer - about 92%-94% probability:

/pcnrv.blogspot.com/2017/05/brachy-boost-therapy-should-be-reserved.html

Fortunately, Michael Zelefsky at MSK is a master at this therapy. SBRT or HDR brachy monotherapy also have great odds of a cure for intermediate risk men but with possibly lesser side effects. MSK offers SBRT, but you'll have to look elsewhere for HDR brachy monotherapy. Protons have no better cure rates or side effects than IMRT, and a proton boost does not have the evidence of effectiveness that brachy boost has.

On to your questions...

1) From what I've presented, do you think that RP is the way to go?

Only you can decide that for yourself, and only after you've educated yourself. In about 3 months, ask yourself the following questions:

/pcnrv.blogspot.com/2017/12/questions-to-ask-yourself-in-deciding.html


2) Are there important questions I should ask the MD's that are less obvious?(Yes, I've reviewed the "long-running threads.")For instance: "My friend told me that the penis is shortened as a result of RP; Is that the case?"

At the end of the sticky for the newly diagnosed, which you may have missed, are exactly those sort of questions. Here they are again for your convenience for your first two meetings with specialists (adapt as applicable for your situation):

/pcnrv.blogspot.com/2017/12/questions-to-ask-and-not-ask-on-first.html Note the questions NOT to ask.

/pcnrv.blogspot.com/2017/12/questions-to-ask-on-first-visit-for.html
/pcnrv.blogspot.com/2017/12/questions-to-ask-low-dose-rate-seeds.html
/pcnrv.blogspot.com/2017/12/questions-to-ask-sbrt-doctor.html
/pcnrv.blogspot.com/2017/12/questions-to-ask-high-dose-rate.html

3) Viagra (sildenafil citrate) vs. Cialis? Do you guys have any recommendations?One is cheap, the other expensive. Are the results the same? How long do you need to take it?

Viagra is going to be sold over the counter and should get even cheaper. John Mulhall at MSK is THE world expert on penile rehab - just do whatever he says.

4) Other considerations, recommendations?

Yes- Job 1 is your psyche, which took a tremendous hit from this diagnosis. Give yourself time to get over the initial shock - your emotional temperature is way too high to make a good decision on anything this important right now. I found that psychotherapy, Mindfulness classes, and prostate cancer support groups got me into a better frame of mind for making decisions. if I haven't overloaded you yet, read this too:

/pcnrv.blogspot.com/2017/10/how-anticipating-regret-and-quick.html

Hello Leonard and sorry that you're here. There's a lot to respond to in your post since you posted a lot of data. (Which is a very good thing...glad you're digging into this.) But if I were to respond to just one statement it would be the comment your friend said: "he wouldn't do it any other way since the likelihood of recurrence is so low, and, if with radiation there is a recurrence, long term survival is unlikely."

While your friend is a doctor and I'm not, I don't think there's any data shows that radiation long-term survival shows that. If so, I'd sure like to see it. Now your friend does make good points about surgery being the only treatment that gives you a definitive pathology--that's a clear advantage of surgery. (Although I personally have never understood the value of that. Even if you had adverse pathology, docs typically recommend that you wait until there's a PSA rise to begin additional treatment. So you have to wait-and-see regardless of the pathology.)

I'm glad that you're also meeting with an RO. Surgery may indeed be the best treatment for you, but you will want to look at all your options. And regarding radiation, keep in mind that there are many types.

Most important: I wish you the best of luck and we hope we can help you in whatever way possible. You have lots of options and at the end of the day, doing the right thing for you is what we want. Good luck!

OK You are asking about Viagra or Cialis, like you think that is all you will need. (like me) IF you chose surgery like I did (hastily) and URO finds spread into your nerves, he will take them. Possibly all of them. (like me) Now no nerves you are into injections and ved for the rest of your life. (like Me) No blood flow to your penis. even if you do not want sex, you need to VED daily for blood flow. (the rest of your life like me). RP the best?? You have that after RP pathology. You know exactly where you are now.??? (like me) What do I know? I have positive margins.( Cancer is present right at the cut) NOT GOOD. Even after all the nerves , lymph nodes, prostate and seminal vesticals are removed, I still could have cancer left behind. I can not advise you of what to do, but if i had found this site, and Tall Allen, I would have gone with RO. RP is not the cure all your friend speaks of. Almost all literature seems to make you think RP includes nerve sparing. My Rp was Done at City of Hope in Duarte CA a leader in Di Venchi rp. Gleason 7

Leonard good post and great questions, I am also at the decision point. I had been leaning towards surgery because I had ignorance and prejudice against radiation. I met with a new RO at the Florida hospital and was introduced to HDR Brachytherapy and was very impressed.


One variable that is important to me is post-treatment recovery and side effects. My study suggests HDR BT has a significant advantage over surgery. Below is a link to some great info on BT.

I have been studying and wrestling with the decision since August and now am confident in my choice. My experience is not unique, I have heard from many others that we need to take the time it takes to learn and become comfortable with the choice. Our enemy is rushing to decision.

I wish you peace.

http://www.cetmc.com/

Agree with Dogdays although in my case I opted for surgery with Dr. Karim Touijer at MSKCC. Dr. Mychalczak, head of radiation oncology at MSKCC Westchester, was really clear and helpful about the advantages of radiation and will be my choice if I need SRT.

It's difficult to take a decision, all depend on the informations you've got and your vision on the treatment with less side effects.
I am trying to find out the solution for myself , my uro suggested RP(Robotic) or RT .
After all the searches I would prefer the AS ,but the surgeon says that the tumor is large on the RT and there are focis on the Lt.
Any recommandations?

age:67 PSA 12,8 diagnosed in sept 2017 with PC gleason 6.
MRI showed tumor 2 cm Rt periph zone + micro focis in Lt transit all gleason 6 .
prostate vol: 60ml .Pet scan done ,lesion confined ,no invasion.


)Mike, I am reposting this for you in a new thread so you can get the attention you deserve for your particular case. Jim)

Post Edited By Moderator (Tudpock18) : 12/11/2017 1:40:27 PM (GMT-7)

Thank you ASAdvocate and Jim