How long can I wait until treatment?

Hi Everyone. I am glad I found this forum. I have been diagnosed with prostate cancer and have been lurking for a few weeks. You all have been been informative. I think this is a very valuable setting, particularly to a newbie like me.

My stats are in my signature below. I'm struggling with the question of what to do now. I have pretty much ruled out radiation because my urologist informed me that the recurrance rate, down the line, is higher than with surgery. Of course, he's a robotic surgeon who has performed about 2500 open prostatectomies and about 300 robotic surgeries. I consulted with a radiation oncologist and he painted a beautiful picture of a full cure with practically no side effects. His story was too good to be true and contradicted what I have read elsewhere. My prostate size rules out everything except surgery and external beam radiation.

I have decided surgery is probably the best course of action for me, but I want to be sure I have the right surgeon. My prostate, at 96 cc, is really large and my urologist tells me this is a complicating factor in doing the surgery and in urinary and potency outcomes. Also, I had a right side laporscopic inguinal hernia repair in 2006 which is also a complicating factor. I really would like to interview 2 additional surgeons (besides my urologist who operates at St. Joseph Mercy Hospital in Ann Arbor, MI), one at the Henry Ford Vattikuti Institute in Detroit and one at the University of Michigan Health System. My problem is there is a huge lead time in scheduling an appointment. My biopsy was on Nov. 7. My urologist, at this point, could not perform the surgery until sometime in March. My appointment at Henry Ford is in late February which would translate into a surgery probably not until April atthe earliest. I imagine the lead times at U of M are similar.

My real question is, can I wait that long to carefully interview additional surgeons, or should I quickly schedule a March surgery with my existing urologist to lessen the chance of metastatic issues? My urologist says I do have considerable time since my cancer is so small and localized, however the Gleason 4 component worries me. While my urologist is very experienced and well-respected, one thing does cause me concern. He stated that his statistics on bilateral nerve-sparing is at 60%, yet his positive margins are in the 10% to 15% range. Shouldn't his bilateral nerve-sparing be in the same range as his positive margins (why cut out nerves if there is no positive margin)? Does anyone have any opinions about this? Should I interview more surgeons or am I risking the cancer spreading by waiting too long? Thank you all so much!

MichGuy

______________________
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor

Post Edited (MichGuy) : 1/10/2009 11:55:48 AM (GMT-7)

Mich Guy,

I thought the positive margins national statistics were around 12%.  That seems to be right where you Doc is.  As far as surgery being better than radiation I have never really been convinced or heard that.  In my wisdom, as limited as it is, choose surgery for I could do salvage radiation in case I needed it if I got bad margins.  Now with my bad margin I am glad I did.

Here's a tip for you....When you see or interview a Doc make sure you schedule a surgery date when you are there for the appointment.  I was told that is the thing to do.  Its not the Doc that takes so long its the availablility of the room he needs to do his work.  Cancel the surgery dates when you finally decide on the one you want.  I did it this way and had no issues. This was recomended to me by a very smart and kind Surgeon.

All the best,

Frank

I agree with Livinadream. A bird in the hand is worth two in the bush -- you have an experienced surgeon who is ready to schedule in March. What do you gain by interviewing more surgeons? Will you be swayed by better salesmanship and bigger lies about their statistics?

And it seems your uro, being experienced in both types of surgery, could switch from robotic to open if the need arises. Not all robotic surgeons can do this -- so there's a plus factor for your current uro.

As far as the margins are concerned, the surgeon doesn't necessarily know at the time of the surgery if the margins are positive. It's only the pathologist with a microscope who can really tell and even then he/she might miss something. Taking wide margins, including the nerves, is a precautionary measure taken for more aggressive cancers.

Your PSA shows a history of a slow but steady rise over time, and your biopsy indicates only a small amount of not-so-aggressive cancer so I don't think a further three months delay poses an undue risk of spreading. But a small risk nonetheless. If you take a gamble like this, better be sure there is a significant advantage in delaying.

In your situation I would run with your current uro.

Hello Everyone,

Thank you all for your considerate responses. This is a wonderful forum for someone like me who is still in shell shock (does that ever go away?) and needs to hear from others who have been through this. Dale, Frank, Swim, Piano...you have helped me in sorting out my thinking.

Frank, your scheduling suggestion was a good one. I wondered whether something like that was possible or whether insurance companies, doctors, etc, would frown on scheduling surgery while still obtaining additional medical opinions. Has anyone else done that?

Regarding several comments about what do I gain by waiting and interviewing further, one item, that of surgical technique, comes to the forefront with me. For example, the Vattikuti Institute, in addition to somewhat better outcomes than my uro, also hype a technique of nerve-sparing called "veil of aphrodite". I don't know if that's worth anything at all, just a lot of unsubstantiated marketing or, perhaps, even dangerous. My understanding of it is that, in addition to the 2 main nerve bundles, there are also very minute nerves on the surface of the prostate which can be spared by a very careful surgical technique. My uro thinks that perhaps what they are doing is actually leaving part of the prostate capsule in place during surgery and not removing it thus risking a subsequent rising PSA. I wonder if anyone can shed light into that technique and is it worth delaying surgery until I interview them to up my odds with regard to potency.

And Swim, thank you for offering an additional line of communication to share your knowledge of our local area. I will take you up on that and email you.

Again, thanks to you all.

MichGuy

Mich,

I had no problem with my insurance for there is no claim made to it just for the scheduling. I am sure you will need to make a decision before typical pre-surgery notiifcations are required.

Take care,

Frank

Dear Mich:

Obviously, you have some remaining doubts about your choice, so I would encourage you to go ahead and seek other medical opinions.  This is a HUGE decision and you want peace of mind about your decision.

While I was making up my mind I scheduled both surgery and seeds, then cancelled the surgery when I decided on the seeds.  I had no insurance issue even though they got a bit confused during the pre-qualifying stage....I just explained what I was doing and they were fine with it.  I suggest you go ahead and schedule the March surgery...then you can cancel later if you choose another doc.

Tudpock