2nd opinion at the Mayo yesterday

I saw Dr. Wehle, a Urologist, at the Mayo yesterday. He was recommended by another doctor at the Mayo that we know. He has done over 500 Robotic prostate operations. On the ride down with my wife, I told her that my preference right now is seeds. Less time out of work, less evasive, less side effects and about the same cure rate.

First his PA came in looked at the biopsy and said that surgery would be the best choice for me and they probably would not be able to have to spare the nerves on the left side because that is where most of my cancer is. He also said that he wanted me to know that at the Mayo, they are not paid by how many operations they do and they want what is best for the patient. I have a tendency to think some PA's are doctor want to be without the education, so I take them with a grain of salt.

Then Dr. Wehle came in. He said that AS is not an option for me with a G6 and that surgery is the best option for me. Most important is 1) take care of the cancer 2) incontinence 3) ED; in that order. He said that radiation never bests surgery and there are less problems with surgery. Radiation may have as good a survival rate, but never is better. He said that he can fix problems caused by surgery, but not problems caused radiation. He said once the radiation is complete, the radiation oncologist's job is complete and they do not have to deal with the problems. The urologist is the one the patient sees if there are problems (and that makes sense to me) and he sees a lot of problems from radiation ( 3 patients a week - is what I think he said). If things go wrong with radiation such as radiation burning through the rectum, I'll be peeing out my butt or if radiation hitting the bladder and there is nothing he can do to fix it. If surgery fails, I would have radiation as a backup. With radiation only have HT as a backup. They have my slides from the biopsy, but have not read them yet and he will call me when they do.

Surgery: Hospital stay 1-2 days. Catheter out after 7 days. 2% need transfusion. Can save nerves 80% of the time and said that probably can save nerves on both sides with a G6 (contrary to what the PA said). 90% of patients are continent within 6 weeks. Spontaneous erections could take up to 1 - 2 years (and I did not write down the % of total ED if nerves are spared). I asked about ejaculating urine and he said that can be the case, but not in most cases. I asked about penis shrinkage and he said that can be true, but that comes from lack of use and the sooner you use it (PT) the less that would be a factor.

Radiation: They do IMR and not seeds (usually) anymore. I'm not sure I could go 5 days a week for 8-10 weeks. I have an appointment for May 20th to see Dr. Buskirk (radiation oncologist) at the Mayo.

Wow. That was kind of a hatchet job on radiation. I am glad you plan to see a radiation oncologist, and I think you will hear a different story. I would never presume to tell you what to do, and only know as much as everyone else does from reading, but that strikes me as an unbalanced viewpoint.

Incidentally, did this urologist/surgeon specify exactly what problems he treats in radiation survivors? Problems resulting specifically from brachytherapy, or from the older external beam therapy used in the past? Be sure and ask the radiation oncologist what your options would be from failed seed treatment as well. HT is not the only option.

Good luck in your decision-making. It can all be so confusing and seems a shame to me that the patient is left with so much of the burden of sorting through the conflicting reports/accounts/expert opinions and making any kind of confident choice.

Juliet

"I asked about penis shrinkage and he said that can be true, but that comes from lack of use and the sooner you use it (PT) the less that would be a factor."

MANY men on this forum will testify that THAT statement is BS...My penis was an inch shorter when I woke up after surgery and it still is.....

I love it when the Urologists, Radiation Oncologists and Medical Oncologists start fighting over who gets a bigger slice of the PC pie....I DO know they all enjoy badmouthing each other...

David, I went back and reread my post to see if I had been 'playing doctor'. While I do see validity in what you say, I also want to point out that, in our case, this website helped us with information seeking and opinions that pointed my husband and me to sources on which to base our decision. The support and encouragement was equally important, but not all we wanted. If I went back now and reread my first post here asking for opinions, I have a feeling that I would find the majority telling of good experiences with surgery. I wasn't offended at all, just grateful...and that isn't the decision we made!

But the things you said made me feel uncomfortable enough to decide not to respond to this type of post anymore, like I already decided not to respond to the Tony/Bob posts. I think I should just stick to the 'congrats' threads. :)

Gleason 6, I apologize and hope I didn't confuse issues for you. Things are just all around hard enough.

Juliet

My rad-onc has me on the same schedule as my uro and med-onc.   I am not being dropped by anyone.

My rad-onc is not done as he needs to monitor me for long term effectiveness and side effects.   Plus if I have a recurrance in the prostate area I may need another round of HDR brachytherapy.   If my PCa spreads I may need radiation to lymph nodes, bone, etc.

No way he is dropping me and I think any urologist that would claim that is simply dead wrong.   After all, isn't the urologist's job done after the surgery?    Shouldn't the urologist dump the patient then?   He isn't going to operate again.   If salvage RT is needed then the rad-onc comes in.  If it metastizes then the med-onc comes in.   Not the uro.

I stand by my original statement that the uro is biased and handing out misinformation.

In my case I reserved judgement and decisions about treatment until I had seen two urologists, two rad-oncs, and two med-oncs.   I wasn't smart enough to think that one through by myself.   It was the requirement of my urologist in order for him to take me as a patient. 

JNF, you said, "If he says he can't spare nerves I interpret that he is essentially predicting positive margins that will require radiation and the very risks he wants you to avoid."

I don't think that's true.  For one thing, it was the PA who told Gleason 6 that the surgeon would probably not be able to spare the nerves on one side.  I take PA's statements with a grain of salt.  This past winter, the PA at the orthopedic surgeon's office told me that my problem was certainly a rotator cuff injury.  Then the orthopedist himself came in and said, no, the injury I had suffered mimiced a rotator cuff injury, but that my symptoms were actually being caused by two herniated discs in my neck.  The surgeon actually told Gleason the nerves can be saved 80 percent of the time, and especially in the case of a G6.

In my own case, the surgeon told me in advance he would likely not be able to save the nerves on my left side, because of the obvious tumor there.  It wasn't a question of a positive margin, but a question of taking a safe approach when the nerves were essentially lying right on top of the tumor area.

I've begun to feel concerned when we second guess newcomer's doctors.  I'm not talking now about anyone in particular at all.  But, none of has even seen the one-page medical history we all have to fill out before we see the doc.  We haven't laid eyes on the patient.  We don't know what other physical conditions the patient may present with.  We don't know what medications they are on.  We don't know their blood sugar levels, their cardiac condition, their blood pressure, their weight, or anything about them.  In fact, what we know is about like peeking thru the keyhole of the doctor's office.  And then we sometimes suggest that the doctors are just trying to pad their own wallets and buy a new Porsche, or call them "salesmen" and so forth.  I think we often go way too far in advocating for our own particular points of view rather than just making suggestions that they look into other treatment options. 

I don't mean to say this site isn't the best around.  I think it is, and it provides a tremendous amount of support.  But we're not M.D.s, and we sometimes get beyond our depth.  IMHO

 

Gosh, it seems like there has got to be a better way to make this critical decision. Maybe a database on the web that compiles all statistics from all doctors and radiologists who perform procedures and give accurate counts of success, side effects, mistakes, complications, etc. Maybe one of us could invent something.

One of the good things about a place like Mayo is that the docs are all on salary, so they don't have an economic incentive to recommend one kind of treatment over another. Of course, they may have other "biases" (such as a belief in their own specialty) but at least the "financial bias" is eliminated. Perhaps because of this, Mayo docs are well-known for working collaboratively among specialties. If the Mayo RO recommends radiation to you, it would be interesting for you to request (1) an appointment at which both docs are present, with you, or (2) that the two Mayo docs confer with one another and provide a consensus recommendation.

Have to agree to a point with reachout - the RO I consulted first with gave me less than good prospects. She pushed RT above surgery, but admitted the numbers were not as good.

A very major (has to remain unnamed) high-profile cancer center turned me down when I did a consult for Proton or seeds - said I should do surgery.

I think that doctors suggest what they know. That is the reason we go see multiple doctors for each treatment path.

But I also agree with David - support means, in my mind, that we help each other understand what our doctors are saying, not offer a new diagnosis.

And yes, G6 is right, this is one of the few diseases where there is no clear path to follow. Reminds me of the drawing of the castle where all steps going up or down connect back to themselves. I am still as confused as I was the first day about what the "right" treatment was. I picked one, then another picked me, so what's done is done, but I doubt I'll ever know if I made the "right" choices.

I don't know why my signature doesn't always show up here, but since it didn't attach to my post above....

DX 4/26/11 (Age 36)

6/15/09 PSA 2.1
3/17/11 Lost Father to Complications of PC and Bone Cancer (Age 59)
3/30/11 PSA 2.5 & Abnormal DRE (Nodules felt) found during post-op for extracorporeal lithotripsy procedure
4/18/11 Biopsy
4/26/11 Biopsy Results = 3 of 12 Cores Positive (both lobes) with Gleason 6 (3+3)
5/5/11 CT & MRI = Negative for metastatic cancer

dont see where sparing the nerves have anything to do with continence/incontinesnce, only effect ed outcome, check it out ! Its another part of the operation, less you mean accedetly cutting urethra in surgery

I'm with Tud on this one; sounds like a strong doctor's bias towards surgery along with a lot of misinformation. My radiologist hasn't dropped me; I see him once a year and email him any questions I have and he always responds the same day. If any problems would arise I would go to him 1st then my oncologist. The things he told you just are not supported by facts; of course there are always issues in any treatment. The Brachy patients on this and other forums have had very few issues. Nerve involvement is one of the reasons I had Brachy. ED was a foregone conclusion with surgery and was never an issue with Brachy.
JohnT

Gleason 6 - sounds like great advice to me. You must feel comfortable with your choice above all and find someone who is great at what they do. I can confirm that I'm doing even better than what this doc says will be probable outcome. Good luck with your choice.