Information overload

Dear Oncas:

I can understand your sense of being overwhelmed with your situation...we have all been there, some with better stats, some with worse and I understand your sense of urgency.

I agree with zufus and will not try to push any specific treatment...that is something you have to decide.  What I WILL do is make a suggestion that many of us make:  Please see multiple practitioners before making a final decision.  Your urologist is probably a surgeon and is likely to lean toward a surgical solution and that may be perfectly correct.  However, it's in YOUR best interest to review your case with a prostate oncologist and a radiation oncologist before making a finals decision.  Im not saying cancel the surgery but you still have 3 weeks.  If you push to get appointments with the other docs you can do it.  And, the result will be that you have the peace of mind when you make a final, informed decision wherein you have carefully considered all of the options.

You also have time to do a telephone consult with a proton therapy doc at one of the few centers that conduct that treatment...

Tudpock

With scores like yours I would hope the results have been verifed by a top notch teaching University lab, preferably one doing clinical trials, as that type of setting can yield or confirm the Path findings because it deals with these types of findings for complex cases all the time.  It would mean providing the actual specimens/slides for review directly. Think of it as a super duper 2nd opinion.

You post doesn't say how many other specialists you have seen on consult.  Have you talked to a Radiation oncologist?  At the least another Urologic Oncologist as a 2nd opinion?  With values like that I am quite confident any self respecting Uro Oncologist would be able to fit you in sooner rather than later.

What is being proposed to you, an open surgical procedure, is very radical. Not saying its not the most appropriate but its still the most radical.  Is there any consideration for robotic (aka Da Vinci) surgery as an option to try to minimize the damage that will be done compared against a human hand controlling the slicing?   How many other opinions have you had that support this same approach?

Coming out the other end is the quality of life you want. open surgery is major and poses considerable risk not the least of which is bladder control and loss of sexual function.  Are you prepared to deal with that? What about 3 or 6 mos from now?

In the end, what is the outcome data saying for men in your age range with your current Path findings re: survival rates?  Has your specialist discussed that with you and provided you with his own stats for men in your comparable age range that he has performed open procedures on?  How many of his patients are still around 1-3-5 yrs out from such a surgery?  Have to had the chance to speak to one or two patients who had a similar surgery done that are in your age range to hear of their experiences post surgery?

This is a HUGE decision that will affect the rest of your life. An abundance of caution is needed, esp at this time when the natural tendency is to go in and remove it all as quickly as possible.  That's not always the best option to take if its being done in panic mode.   I hope for your sake you give yourself the time to become informed enough about the other options to

make the most informed decision you can. You aren't going to die tomorrow or next month from this type of cancer.  Give yourself the time to get educated quickly using experts, plural, in your geographic area.  In the end, its your life and you are the one that has to consent to whatever treatment option you ultimately end up taking.

Greetings, everyone.  As one who did have the open surgery, let me weigh in with why I went that way.  First, my urologist is not a surgeon.  He did the biopsy and when it came back positive, he said that he would have to refer me to someone else for whatever treatment we (my wife is not only a nurse, she is also my life partner and thus a big part of this decision) might choose.  While he recommended surgery based on my stats and my age, he did at least mention all of the other possible treatments.

When I saw the surgeon that was recommended, he spent an hour with us and we discussed open vs. robotic.  While he indicated he believed that robotics was the wave of the future and many places were doing it very successfully, his expertise was open surgery and he liked it because he could look around while he was in there and make decisions based on what he saw.  In fact, while he was doing my surgery he found a spot that he marked and came back to after he had completed the prostatectomy.  He removed the spot and sent to the lab.  It was benign, but I'm glad he was able to see it and take it out.

He was very upfront with me that regardless of open or robotic there would be issues with impotence and incontinence - typically for up to 2 years.  He closely monitors his patients and his statistics are that after 2 years impotence is no longer an issue for 92% of his patients - of course that may mean that they are still taking meds but they are functioning "normally".  Also after 2 years 90% are no longer dealing with incontinence issues. 

For me personally, I was fortunate to be pad free after only a couple of days.  Doesn't mean I haven't had a drip or two in certain circumstances but basically dry.  I did have nerve sparing and have not had big issues with impotence although I do take the ADC version of Levitra two times a week. 

Bottom line, get all the input you feel that you need and then do what is right for you.  Don't let fearmongers try to push their method of treatment on you.  Do what is right for you in your circumstances.  The same treatment is not right for everybody.  While I am eternally grateful for the brothers (and sisters) on this forum and the tremendous support they have given me, we all need to recognize that we are sharing our own experiences.  When it comes down to it we use those experiences as we talk to and get advice from medical professionals who help us make the treatment decisions we need. 

Best wishes as you make important decisions.  David

Oncas,

A friend of mine (who can afford it) is flying up to Johns-Hopkins next week to have an open procedure, as recommended by the head of urology there. Other experts, such as Joseph Smith (head of Urology at Vanderbilt), prefer robotics.

Personally, I had robotic in '06, while my brother had open surgery 3 months later. Our recoveries were similar. Point is, find a good Dr. and you'll be OK.

To answer your question, I don't know what options (surgical vs other) would be best for you. I was told, because I was 41, surgery was my only prudent option. I can see where age may play a factor in making a decision, among other things. Ultimately, you will have to decide for yourself. Now that my disclaimer is over, it sure sounds like surgery may be a good option for you.

I don't know at what point you separate cure from management. I know there are several on this forum who 'manage' this disease every day. If it ever comes to that, you can find great inspiration here. For now, I hope you can concentrate on being cured and moving on with life.

I wish you the best, as I know everyone else on this site does (whether they agree on the specifics of your treatment or not). We will be thinking of you on the 26th. Please let everyone know how you're progressing.

Smokie