Time to move forward immediately with RRP?

Yet another recently diagnosed guy here, in shock over the diagonsis and trying to wrap my head around it all. In a matter of very few days I went from finding out my PSA was 4.7 in the wake of a routine physical to the point where I am now. Saw a urologist that Friday, had the biopsy on Monday, got the call with the positive biopsy results on Thursday, went for bone and CT scans on Monday, saw the urologist for those results on Tuesday. My head is still spinning.

My doctor is fairly young (joined his father's urology practice in 2006), but seems to have a good background with a residency at Mayo. He has several years experience with the Da Vinci but feels that I'm not a good candidate because of pre-existing scar tissue I have in my gut from a prior gall bladdar surgery in 2001. That scar tissue caused problems when I wound up in the hospital by surprise for several days last August for a small bowel obstruction, where the scar tissue basically snagged on my bowel and caused an acute blockage. Somehow, to the surprise of the surgeon following me in the hospital, I dodged surgery and the situation resolved.

My basic info:

age 49

PSA 4.7. Prior in May 2008 was 1.6.

Uncle had RRT in early 1990s at age 66. Grandfather was diagnosed with PCa at 80 but no action was taken before his death from other causes at 88.

Biopsy showed GS 7 (4+3) with 8 of 9 samples positive. Right side is most severe with 94%, 80%, 93%. PNI was detected.

Bone and CT scans negative.

Doc feels it's best to move forward as soon as practical with RRT. I started a new job (6 month contract on an office job) the day before I received my diganosis. As of July 1st I'll have short-term disability, which was the major factor in scheduling me for early July instead of late June. He says it's optimal to move forward 6-8 weeks after biopsy.

I'm wavering just a bit between wanting the Ca out of my body before it can spread, to wishing I could postpone it since at the moment i feel physicall fine and have full function, and that I know things will never again be the same afterwards.

There are other factors going on as well, just things that keep my life "interesting". A year ago, with no warning, my wife walked out. We had been married for 4 years and literally never had a fight. It completely blindsided me and I attribute the stress i went through from that and some other stuff over the past year to the rate at which my Ca has progressed. She never made any effort at fixing things either before or after she left. Of course, before she left i had no idea she thought there were any problems. We moved into separate small rental homes in the same town, but next week she moves out of state. Not that I would expect any level of support from her, but at least she has kept me on her insurance policy since I have been unemployed for the past year. That insurance ended 2 days ago and we're scrambling for me to get a COBRA policy.

I have to keep my PCa secret from my employer. I'm the new guy who's fairly expendable and if for any reason they decided to let me go before my benefits start in July I'll be screwed, both in regards to income and disability insurance. I fear that if they knew now what I'm up against that they'd bring in someone else to work on the project I was hired to do. There's a chance this position could become permanent, but even if it doesn't I really need to hang onto my income as long as possible. I figure that on July 1 I'll tell my manager that I have to go in for surgery the following week and that it will take me out of commission for at least a couple of weeks, giving as few details as possible.

Mentally and emotionally I'm bitter and angry about winding up like this, along with being depressed, etc.

 

Post Edited (pogmothoin) : 5/23/2010 12:50:47 PM (GMT-6)

Thanks, BB. One thing I'm not sure about at this point is whether I even have the option of seeing another doc for a 2nd opinion at the moment. Since the insurance just ended but COBRA is not yet in place, I'm afraid I have no coverage at the moment. I know COBRA would be retroactive to provide seamless coverage once it's started, but right now I think i'm in limbo. I'll try to get more info on that this week.

From what I've read and heard so far, I just don't see that I'm a candidate for any other options. BTW, the doctor sai his gut feeling is it's likely that I'll need radiation therapy after the RRT, but of course he won't know for sure until later. He's going to attempt nerve-sparing if possible, but that depends on what he finds once he's inside and of course any efforts to save those vital parts may well be negated if I requre radiation.

Moving ahead with appropriate deliberation is always suggested. I had similar (actually a bit worse) biopsy results. My Doc was of the opinion that 8 weeks was the proper window between biopsy and surgery, to allow as much healing of the rectum as possible. He felt that also makes it easier for the surgeon to do a better job - less potential for extraneous complications.

We are all big on knowing who did the biopsy analysis, as some labs have an almost mythical reputation. Most here will suggest a second analysis by another lab (I did not do that).

Second and third opinions will involve not only surgeons, as you will want to get a radiation oncologist's opinion as well.

My biggest suggestion is to step back, deal with the insurance issues, and then proceed with calm. Of course your mind-set is in panic mode right now (I've been there), but that is not the best position to make decisions from.

I second-guessed myself up to the day I went to the hospital, but once the final pathology came back, that stopped.

As was said above, waiting for years is not viable, but neither is scheduling surgery until you understand the options. Not being a physician, I can't say anything is a "better" treatment, but I encourage you to have the discussions required to understand why each option is or is not applicable.

Check the local library for a copy of Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (at least the 2nd ed., there is a 3rd. out this year, but I have not see it yet). I would suggest that you buy one, as it is nice to have to refer back with questions along the way. Also check to see if you have a local office of a Prostate Cancer support group, where they might have resources you can take advantage of.

And, I hate to welcome you to this group. None of us want this for ourselves or anyone else, which is probably why you will find so much support here. Welcome.

Pog,
You have time before you can start any kind of treatment. My Uro wanted to wait 6 weeks after a biopsy before surgey. In 6 weeks you will have insurance and be able to get a second opinion on what treatment is best for you. Sorry about your wife leaving you at such a critical time. Know that all of us here support you on this journey. Best of luck.

Hello Friend,

You are dealing with more stressful situations that one should be allowed to deal with...!  You've earned the right to a little anger and frustration.

Well, let me just say that your July timing sounds fine, and you shouldn't stress-out about that.  Your doc also says to move "as soon as practical"...that's reasonable.  A couple weeks here or there are not going to make a huge difference even with some aggressive "4" cells. 

It sounds like you have been spending some time educating yourself about prostate cancer, which is absolutely the best thing you can do right now.  There is lots to learn.  Someone already suggest Walsh's book, and I would strongly second that recommendation...the book is considered the "bible" of PC.  Order it online and you will have a copy by Wednesday or Thursday.

There is a list of commonly used abbreviations used in the PC-world that are at the top of the page (of PC threads).  Here are a couple examples:

RALP – robot-assisted laparoscopic prostatectomy (similar to LRP but with “robotic” assistance)
RP - radical prostatectomy
RPP - radical perineal prostatectomy
RRP - radical retropubic prostatectomy
RT - radiation therapy; also: right side

You used one not often used here, RRT.  Whatever you meant, many patients today with cases similar to your are undergoing multi-mode treatments...surgery followed by adjuvant radiation, or combined hormone therapy with radiation.  There are very recent threads posted on this site for both of these situations.

best wishes...

Casey59 said...

You used one not often used here, RRT.  Whatever you meant, many patients today with cases similar to your are undergoing multi-mode treatments...surgery followed by adjuvant radiation, or combined hormone therapy with radiation.  There are very recent threads posted on this site for both of these situations.

===================

My mistake, I meant RRP. Years ago I worked in respiratory therapy so I guess the term "RRT" (registered respiratory therapist) just floated to the surface when I intended to type something similar.

--I had the doctor print out my report, it says Dianon Systems, from Oklahoma City.

I didn't know that name (mine went to Bostwick), so I looked them up. They are part of LabCorp, which is the obligatory lab for my insurance company. Bostwick was a preference of my physician. Labs keep the slides, and it is perfectly within your rights to ask that they be sent to a lab of your choice for a second opinion. It could be expensive, but it there were doubts as to type of applicable treatment, it could help resolve them.

However, in my non-professional mind, I would ask what the Gleason was on each of the cores before asking for second evaluation. Lots of folks do it, but my insurance would not have paid, and I was starting with one of the leaders.

James posted a list of threads for another member about getting ready that would be useful for you. I'll find it and add the link here, so check back later.

Added Link from James' post:
https://www.healingwell.com/community/default.aspx?f=35&m=1541459

You would likely need some help at home. I had family come for a week after, but generally was on my own getting ready and afterwards. I had to ask a few favors from the neighbors. That is tough, but it can be done. The insurance may pay for some "at home" help, and the hospital or your doctor may have suggestions.

Post Edited (142) : 5/23/2010 1:18:24 PM (GMT-6)

Welcome here

Yes you need to wait 6-8 weeks after a biopsy for the area to heal/recover enough for things to get back to normal for the delicate snipping work to be possible during surgery.

However...
I think that the most interesting and important thing you said was that your doc is already guessing that even if you have surgery you might need RT anyway.

I am currently having RT after surgery. My post-operation patholgy also made us guess that RT was likely to be needed, however my pre-op pathology from the biopsy did not suggest my case was as bad.

Ask him to explain why he is already anticipating that surgery won't sort you out? Why is he not suggesting only doing RT?

Alfred

Pog,
Welcome to HW.
(And would I be seein' a wee bit o' the Gaelic in ya now. Me struggle an' strife wus a Doyle.)

You'll find all kinds of support here. I'm willing to bet a few guys have already volunteered to do your grocery and pee pad shopping for you. I know I would in a second. Feel free to contact us off line. Most of us have listed where we are from in another thread. I'll try to find it an bump it up near this one.

I am a firm believer in staying anon and keeping it the situation to yourself. In general the guys with income, e.g., established jobs, tenure, working spouses, etc are able to share more. The self employed, sole breadwinners keep it under the radar. It is tough but it also helps in certain ways.

You are making the right decisions and are doing what you have to do. You have a little more than a month to kick butt and get in shape. With the walkout, I'm pretty sure you are already in decent shape but you have to work on the kegels.

One parting note, you may think you are alone. You're not. You just found more understanding friends than you can imagine. Don't be afraid to ask.
Slainte
Jeff

POG, I'm just South of St.Louis.....shoot me an email.?