Husband Just Diagnosed - So Many Questions

okiediva · New User Joined: 11 Jan 2008 Posts: 3 Location: Tulsa, OK

It's been 16 hours since the doctor's office called with the results of my husband's second biopsy (sparked by a high PSA)... Gleason 3+3, but nurse said something about "only in 5% of samples." He and I have both spent a lot of time surfing to get info, don't have an appointment to sit down with doctor for talk until Monday afternoon.

Husband is 62, controllled high blood pressure but an exerciser and healthy otherwise. Has had high PSAs - diagnosed previously as BPH - for many years (had biopsy five years ago, due to high PSA, that was negative and not suspicious). We have a 7 year-old son. Keeping my husband here with us for as many years as possible is my priority. His is to get the cancer out of his body as soon as possible - IF we can still have a normal life (erections and no incontinence).

A church friend of about the same age, who we'll be talking to soon, had "microsurgery" at MD Anderson about six months ago.
- Have any of you chosen MD Anderson, Sloan Kettering or another specialty cancer center over local guys? If so, why?
- I've heard from others that our insurance company is often reticent to approve out-of-network providers - so what can we expect cost-wise (ballpark), if we were to go with a nerve-saving surgical procedure at MD Anderson (all things being equal, that's probably the most likely of centers for us, given our proximity to Houston and the fact that we have family there)? We'll find a way to pay for it, period, but I want to start getting a grasp on how/where it will come from.
- Can anyone give me more information on what this 3+3 means? I'm not finding things in common English on the web, and I don't want to have to wait until Monday for answers.

Thank you in advance.

sanjis · Regular Joined: 12 Oct 2007 Posts: 35

Look at this it explains the Gleason score

http://urology.jhu.edu/newsletter/prostate_cancer65.php

I know what you must be feeling right now. Still going through it ourselves. My husband is 55 and was diagnosed in September. Just had the DaVinci Prostectomy on December 13th. Before the surgery he was a Gleason 3 + 3 but after the biopsys after surgery they upped it to 4 +3 so the aggressive cancer had taken over. If I can help pm me. Right now I know your brain is going a mile a minute and in panick.

okiediva · New User Joined: 11 Jan 2008 Posts: 3 Location: Tulsa, OK

Thanks, that's helpful info. Sorry to be so ignorant... I'll get smarter as we go along, I'm sure... but is DaVinci the same as "microsurgery" or is it something else? Also - was your husband's surgery at home/local docs or at a specialty cancer center?

sanjis · Regular Joined: 12 Oct 2007 Posts: 35

My husbands surgery was done by a urologist that specializes in the DaVinci Robotic Sugery. He had the nerve sparing done. He only had done it maybe 325 times. I have heard it is better if they have 500 surgeries under there belt but he was who we were sent to. Not for sure if it is the same as the Microsurgery. Still kinda new to all of the terminology myself. He had it done at the first available surgery schedule for the doctor and the doctor traveled between 4 hospitals. It still took 2 months for a surgery date, it was not a special cancer hospital. Usual stay in hospital is 24 hours with this surgery.

chas036

If you are considering surgery, I would strongly recommend you take a look at this new procedure being formed by Dr. Ashutosh K. Tewari, director of robotic prostatectomy at NewYork-Presbyterian/Weill Cornell hospital in NYC. With this new procedure for reattaching the ureatha, 65% of the men are fully continente within 4 weeks after surgery and 95% after 16 weeks.

http://www.medicalnewstoday.com/articles/70715.php

My name is Charlie and I'm a 50 year man who pees his pants. That is what I tell people that ask me about my prostrate surgery.

I had robotic surgery on 9/25 and now I have to wear a diaper to stay dry because I am fully incontinente from my surgery. Well, I really use a pad, but saying diaper sounds more dramatic. YOu don't know how frustrating incontinence is until you have it s, especially if you had a very active life style before surgery, like I had, and now your life revolves around your incontinence and changing your pads.

I did a lot of reserach prior to my surgery, but I wish I could have done more or had someone tell me more about someone like Dr Tewari and incontinence as I am telling you.

I knew incontinence was an issue after this type of surgery, but because I was relatively young, and in excellent pyhsical condition, and had been doing kegels for 4 months prior to my surgery, I had a false set of hopes, and I thought that I wouldn't have any problems with incontinence, or if I did, it would be very minimal at the most.

I even picked a good surgeon who had a good reputation and had performed well over 1000+ of these operations, so I thought I was in good hands, but luck was not on my side.

It has been almost 16 weeks since my surgery, but I have not seen one bit of improvement in my incontinence in those 16 weeks, nothing. I use 3-5 pads a day depending how much time I am on my feet. The only good thing that came out of my surgery, other than my cancer being removed, is that I have no ED problems what so ever and I can get a full and hard erection without using drugs. But you know what?,,,,it is completely worthless to me becuase of my incontinence. Because I drip so much, and when I have an orgasm I ejectulate urine, my wife wants nothing to do with me until I stop leaking.

What I am trying to get across to you if you are considering surgery is that if you can find someone who can give you a better chance of continence very quickly after surgery like Dr Tewari can, then do everything in your power to take advantage of this and use this surgeon or ask your surgeon if he can do this technique. You don't know what having incontinence is until you actually have it, and it is something you don't want to experience if you don't have too.
_________________
Biospy 4/2007 - 2/12 <%5 Cancer Gleason 6
RP 9/25/2007 Uni Rochester, NY
Gleason 6, Negative Margins

sanjis · Regular Joined: 12 Oct 2007 Posts: 35

I would have loved my husbands surgeon to have done this. I don't know how new it is but my when we asked about it he said it was a sling and he didn't do it. I think it was because he hasn't been trained to do it. If you read the information it does say you have to be trained how and if it is new enough not that many have been trained to do it yet. I had all the information and doctors name but that was just 30 minutes before the surgery.

And with me, I don't care if there maybe urine just hoping the ED goes away.

johnw100

Your main decision is choice of a top doctor: he will have greater influence on both short term side effects and long term outcome and will be more important than the kind of surgery or treatment employed.
Robotic claims the advantage of faster recover time, but a very good surgeon will have his patient recovering quickly with creater chance of few side effects, regardless of whether open surgery or robotic is used.

With recent screening, most men are now diagnosed with early stage low risk PC 3=3 gleason scores. Intermediate and high risk diagnosis include scores of over 7. Gleason readings are subjective, so it can be worth obtaining a 2nd reading of your slides, and of any future biopsy you might have done.

It's worth taking the time to fully consider your options: most who do this are pleased they did not rush or were not rushed into a hasty decision.

It's worth reading a good book: "Prostate Cancer Prevention and Cure" by Lee Nelson MD is very comprehensive and covers diagnosis, treatment options, selecting your doctor, lifestyle, diet, supplements etc.
For publications which include more specific details about surgery, the publications by the top surgeons Dr Walsh or Dr Scardino are both very informative.

okiediva · New User Joined: 11 Jan 2008 Posts: 3 Location: Tulsa, OK

Thanks to all of you... I'm anxious for our visit with the doctor on Monday, but am so thankful for this information to begin exploring and discussing ourselves this weekend. I appreciate your input (and welcoming continuing commentary)!

johnw100

Obtain a print out of your biopsy report which will give more details:
# of samples tested,
# of positive samples,
along with the % in each positive core you mentioned, and other information.

There is plenty of information available here, but one of the best sites I've found for experiences of patients is the yananow.net site which has lots of details on treatment choices and also mentors experiences which has the stories from many men who have chosen various treatment options.
They provide great detail about all options including "active surveillance" by men with "insignificant" tumors, surgery, radiation, proton treatment by men with low and intermediate risk etc.

brainman

Hi oikiediva, I am very sorry about your husband's cancer. You have already received a lot of good advice and information from others who have been through prostate cancer themselves. I find that the best way to use this site is in conjunction with your husband's own medical team. Use this site to find questions you need to ask on Monday when the two of you go back to the doctor.

MD Anderson is a fantastic research hospital. However, most local doctors are equipped to handle a PC Gleason 6 (3+3?). You obviously need to clarify with them what they mean by Microsurgery... DaVinci Robotic Surgery or something else? Then make sure the person has a lot of experience with whatever surgery he will use.

You and your husband are in my thoughts and prayers.
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Administrator and long-term cancer survivor
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sequoiaranger · Posted: Sat Jan 12, 2008 2:38 pm Post subject: Keeping Your Husband With You?

I always hate to hear of anyone getting this vicious malady. Sorry about your husband.

>Keeping my husband here with us for as many years as possible is my priority. His is to get the cancer out of his body as soon as possible - IF we can still have a normal life (erections and no incontinence). <

Don't even bother with the "if" conditions. GET IT OUT NOW! With your medium Gleason scores it is likely that the tumor has not pierced the prostate wall, and a prostatecotmy might just cure him. Yes, you risk ED and incontinence, but....otherwise you risk a nasty, tortuous death.

I was 58 this last year when I had a radical, retropubic prostatectomy (Gleason 9+). I am fully continent, but totally ED. It is like my sexuality aged 25 years wheras the rest of me did not. Any loss of function is sad, but I am grateful for the rest of my functions.

In my case, I fully believe that for some dilly-dallying by my urologist, I might not have metastasized. You can't rush in uninformed, but do SOMETHING quickly to spare heartache later on.
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