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What should I expect

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Woodworker
Regular Member
Joined : Apr 2010
Posts : 90
Posted 4/2/2010 6:11 AM (GMT -8)

Age : 56
2 cores of 12 positive
PSA 2.7; Gleasen (3+4) 7

I just received my diagnosis about 5 days ago. The decision has been made to do robotic assisted surgery. I expect the surgery to take place in about

6 to 8 weeks from now. My question is, what can I expect after surgery. I am talking about post-operative treatment, problems, etc.  Any inputs would be greatly appreciated.

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/2/2010 6:28 AM (GMT -8)
Woodworker,

First, welcome to HW Prostate Cancer. This was a great place to come to, now that you have a PCa diagnosis.

My first thought, is that you were only diagnosed 5 days ago. And you have already made up your mind about your primary treatment? That sure isn't give you much time to think about options and choices. With a Gleason 7, I agree that it needs to be treated, but have you thought through all of your choices? Not questioning your decision, as much as the shortness of time. Robotic Surgery is a common and well used treatment here, but like any surgery, it can come with a big price as far as side effects and quality of life issues.

Some here would reccomend getting a second opinion on your diagnosis.

I had open surgery with an agressive and fast acting Gleason 7 myself. If you go for surgery, we can help you with any phase of your surgery, pre-surgery and post surgery, dealing with incontinence issues, and ED issues.

My "specialty" from experience only is in the areas of catheter use and care, and a good understanding of pain managament. Be happy to help answer any questions you have.

We will support any decision a man makes here for treatment, but just wanted to make sure that your weren't rushing into surgery before you had a chance to slow down and think about what that really means. Whether it be robotic or open, PC surgery is a very complex and invasive, life changing surgery. So its important that one newly diagnosed knows what he is getting into, and what the risks and rewards can be.

No such thing as a dumb question here. The brothers and our dear sisters here, will more than eager to help you and support you along the way.

Please keep us well posted.

David in SC
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Sephie
Veteran Member
Joined : Jun 2008
Posts : 1804
Posted 4/2/2010 8:01 AM (GMT -8)
Woodworker, I don't have any advice about surgery except to tell you that it is invasive and major...

I am curious - and hope you don't mind my asking - but with a PSA of 2.7 at age 56, what led you to do the biopsy? Was there a sharp increase over time? A nodule felt on exam?
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Woodworker
Regular Member
Joined : Apr 2010
Posts : 90
Posted 4/2/2010 8:14 AM (GMT -8)

David

I appreciate your response. When I spoke to the surgeon he did point out to me that a surgeon would have a tendency to push surgery and an oncologist would lean towards radiation. The surgeon did offer to make me an appointment with an oncologist for a second opinion. I passed on the offer.

Instead I made an appointment with my Primary Care Physician. It is his attention to detail that got me in for the biopsy. My wife (a retired nurse) and I went through a lot of doctors  before we found one that we felt was competent and actually talked to you.  As a result we trust his judgment. 

When I asked his opinion he immediately told me surgery and why.  When he found out who my surgeon was he was not happy with that and immediately made arrangements for somebody that he thought was better qualified. After reading the background of both surgeons I agree. 

I left that appointment with the feeling that my PCP was making a deliberate effort to make sure my best interests were served.

Before making my decision, I did look at radiation as well.

I considered the side affects of both radiation and surgery. I also read the stories of quite a few prostate cancer survivors as well.  I was leaning towards surgery before I met with my Primary Care Physician. He was the straw that finalized the decision.

It is my understanding that with surgery the prostate is sent to the lab and tested to see how bad the cancer was (level) how wide spread it was and if it made it to the outer part of the prostate( which would lead one to believe that cancer may have spread beyond the prostate).  I did not see anything that indicated to me that this information would be available by any method other than surgery.

It is because of this information collection  and my PCPs input that I chose surgery.  I realize there are not any absolutes. But I felt like this was the closest thing to it.

Kevin

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Woodworker
Regular Member
Joined : Apr 2010
Posts : 90
Posted 4/2/2010 8:16 AM (GMT -8)
Sephie

My PCP seems to be a very intuitive and alert person. It wasn't the level that conerened him, It was how much it had increased from 2 years before.

Kevin
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Casey59
Veteran Member
Joined : Sep 2009
Posts : 3173
Posted 4/2/2010 8:17 AM (GMT -8)
You've been busy in the last 5 days.

best wishes...
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Casey59
Veteran Member
Joined : Sep 2009
Posts : 3173
Posted 4/2/2010 8:21 AM (GMT -8)
There is a "sticky", which appears as the very first item in the list of posts.

It is called "Prostate Cancer: The Really Useful List made by HW people for HW people", but 90% of it is focused on pre- and post-surgery. It's kinda random thoughts captured & somewhat organized. Not everyone would agree with all the points, but most are good.

Take a look...
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142
Veteran Member
Joined : Jan 2010
Posts : 7298
Posted 4/2/2010 8:22 AM (GMT -8)
Woodworker,
Welcome. I would echo David's question, although I had done a lot of the research before I got the full biopsy report (the DRE was basically bad enough that they shuffled schedules to get the biopsy in as soon as possible), so I had a short (several week) decision path. I had several full professional additional opinions, and because I have some family connections to the medical world, I had a lot of short conversations with some leading professionals, and patients (through local contacts).
My pathology was fairly brutal (age 56 myself at first diagnosis, 12 core biopsy, 9 positive, Gleason 4+3 in 2, Gleason 4+4 in 7).
I did not want Radiation combined with the expected long-term HT, due to the lifestyle changes, and the relatively low success rate the doctors quoted.
I was very excited about seeds, since that was a technology I followed closely many years ago, thinking it would be one of the most exciting uses of radiation (I once did programming for radiology labs, and felt like it was some of the most valuable work from the point of impact on others I ever did). Pity that every doctor to the last one interviewed said I was too far along for seeds.
HIFU is not considered by my insurance.
Proton theraphy would have been a viable option, but a combination of medical and job considerations ruled me out of the nearest program.
I finally did DaVinci, more because I trust the surgeon, and he doesn't do open anymore. I don't regret or question my decision, but I do wish I had found it earlier.

So we all look at time to decision thinking about our own paths, and compare our numbers to yours.

I have posted a lot both here and over on CSN's prostate page (same id) about preparation, and some things about "afterwards" - I am not the poster child for painless and dry recovery, so don't be too discouraged by my stories - 98% do better if you accept the publicity. On this site, we have a member who has consolidated a lot of our thoughts in a post that shows up at the top of the forum - start with that.

Again, welcome.

(added)
Tells you everyone is active here - I started my post after David's, and 5 more were added before I hit "submit".

Post Edited (142) : 4/2/2010 10:25:52 AM (GMT-6)

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RCS
Veteran Member
Joined : Dec 2009
Posts : 1348
Posted 4/2/2010 8:34 AM (GMT -8)
Woodworker,

If you haven't done so, you might want to consider getting copies of two books:

"Guide to Surviving Prosate Cancer", by PAtric Walsh, and

"Saving Your Sex Life, A guide for Men with Prostate Cancer.

I found the books addressed many of my questions.

Good Luck!

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142
Veteran Member
Joined : Jan 2010
Posts : 7298
Posted 4/2/2010 8:41 AM (GMT -8)
Adding to the books - Michael Korda, "Man to Man"
Written in 1996, but if I'd written one last week, wouldn't be much different. It is a quick read. I read it after the fact, and was amazed how close the stories could be - but I didn't have the ER run afterwards, luckily.
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Tamu
Veteran Member
Joined : Oct 2006
Posts : 626
Posted 4/2/2010 9:17 AM (GMT -8)
Woodworker,

The first person you should ask about what to expect after surgery is your surgeon. The good ones can quote you their statistics relative to incontinance and ED. You should also ask your surgeon about penile rehab and what is his protocol for it. You should have already received from the surgeon a printed brochure that tells you such things as prep needed, days with the catheter and restrictions post op and how long for them. I believe it is difficult to get an idea of complications rate from this forum as those men who do not have any incontinence or ED issues have no motivation to be posting on this site or any others. If you have not found it yet there is a a web site, www.yananow.net, which has a lot of men's experiences with different types of treatments.

I am impressed with you PCP. I would say he is above the average.

Tamu
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Tudpock18
Forum Moderator
Joined : Sep 2008
Posts : 5380
Posted 4/2/2010 9:42 AM (GMT -8)

Kevin, I will not try to change your mind about surgery and if that is your choice, good luck.  However, I must say that I really agree with David's (Purgatory) advice.  Making a decision within 5 days after talking with only a PCP and a surgeon is not good due diligence.  If you don't take the time to talk with a radiation oncologist and a prostate oncologist you are not doing your homework, IMHO.  This is a potential LIFE CHANGING decision that you are making.  Do yourself a favor and do your research before you leap...

Tudpock

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142
Veteran Member
Joined : Jan 2010
Posts : 7298
Posted 4/2/2010 10:29 AM (GMT -8)
In Tamu's comment, the operative word was "should", and I agree whole-heartedly that you should be given a mass of information. I found that all of the doctors I worked with would answer any question I asked, even being tape recorded, but other than some really simple, boilerplate sheets, I got virtually nothing in un-provoked guidance from the medical community. My hospital is part of one of the largest university / research complexes in the States, but they did not provide the booklets or CDs that some people talk about getting.

If I had not had the lists from sites like this, and a local Prostate Cancer Foundation branch, I would have been brutally surprised by a lot more than I was. Even then, no one warned me that my testicles would swell up to the size of grapefruit about 4-5 days out. I was ready to call an ambulance until I found it on a site as a frequent side effect. (I didn't know about HW until after my surgery).

I've brought the subject up, and am told that because the advice and suggestions in mass printed material are not custom to my case, there are legal issues based on who gives it to me and in what context. I talked to the post-op folks at a couple of other big local hospitals, and got the same reaction. That is also why we all tend to remind each other that we tell our experiences, and always send you back to your physician for advice.

But search and read so that you can ask the right questions. As English Alf has in the list - forget about all the daily, trival things that people think you should care about, and focus on understanding what you need for the next few weeks.
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gold horse
Regular Member
Joined : Nov 2009
Posts : 366
Posted 4/2/2010 11:47 AM (GMT -8)
Hi woodworker,I hope you know there is a difference between(4+3)and (3+4)the later is worse than the first.yes it is soon to make that choise,but for me the sooner I get pc out of my system the beter it will be. the surgery is a life changing but I guess any other procedure is.In my humble opinion you made the right move.good luck and we are here to stay with you every step of the way.God bless you.tongue

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Woodworker
Regular Member
Joined : Apr 2010
Posts : 90
Posted 4/2/2010 11:51 AM (GMT -8)

I guess I should have elaborated a bit more. When I received my initial diagnosis, the doctor’s office handed me a CD, a bunch of pamphlets, and a list of web sites to visit.  I have gone through that material and a lot more.

I have also spoken to somebody at our church that has had the radiation seeds. I am the type of person that wants huge amounts of information. If that information starts showing a pattern I am comfortable with it. If it doesn't I keep digging till I find the pattern.

There are several of you that think I have made this decision too rapidly and I appreciate the concern. Before I made my decision I looked at long term affects, success rates and what to expect immediately after the procedure (both radiation and surgery).  I do feel very comfortable with my decision.

However, experience has taught me that nothing can compare with first hand accounts like the ones I am reading about here.  They are going to prove invaluable as I get ready for this and after I have had the surgery. 

For what its worth, I know life will never be the same and I am scared to death about this whole process and its aftermath.  I just know that it has to be taken care of.

 

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Woodworker
Regular Member
Joined : Apr 2010
Posts : 90
Posted 4/2/2010 11:58 AM (GMT -8)
Gold Horse

I appreciate you cluing me in about the Gleason score. I just looked at the pathology report and it says:

LEFT APEX PROSTATE: ADENOCARCINOMA GLEASON SCORE 7 (3+4)
-CARCINOMA INOLVES 25% OF THE SPECIMEN
-2 OF 2 CORES POSITIVE

All other portions of the prostate indicated benign

Kevin
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Ziggy9
Veteran Member
Joined : Jul 2008
Posts : 988
Posted 4/2/2010 12:41 PM (GMT -8)
I have to agree with Tud you should take more time educating yourself. The Pca has been growing for years a few more weeks/months aren't going to make a difference. I always shake my head at those who rush to major surgery and possible life altering side effects only a few weeks after dx. Many here take more time in buying a car than in choosing radical cancer treatments. You may well go with radical surgery but be confident by the time you do you really understand what you are signing possibly up for. There are no do overs afterward.

AS an example when I first arrived here a few weeks after dx I was leaning towards radical surgery, then I was going to go the seeded option and through luck and geography I found a less invasive therapy with hardly any side effects instead. If I had rushed to treatment as fast as you are I'd have major regrets now. I'm just saying educate yourself, reflect on all the issues pro and con take a week off the best you can to rid yourself worrying about PCa. Then after reflection choose an option, then don't look back.
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skeener
Regular Member
Joined : Dec 2009
Posts : 214
Posted 4/2/2010 1:33 PM (GMT -8)
Woodworker

 

Sounds to me like you have done enough due dilligence and are comfortable with your decision.

 

You are lucky to have such a good PCP.

 

Best wishes as your PCa journey progresses.

 

Skeener
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Cajun Jeff
Veteran Member
Joined : Mar 2009
Posts : 4175
Posted 4/2/2010 2:13 PM (GMT -8)
Kevin: i must say you did make a decision quickly however it looks like you did a lot of homework. Do continue getting info about what to expect. some are leakers and many have problems with ED.

Some of us are very lucky and have an easy ride through the surgery. Little or no pain. I had no pain. Some tend to leak. I have been lucky there as well. Dry!!! Some have ED.... That one hit me...very frustrating. Do ask you Dr about rehab for ED.. My Uro was not very helpful. Healing Well was much more help to me.

Best of luck. Do keep us posted.

Oh by the way, My G was 3+4 7 after surgery downgraded to 3+3 6.

Cajun Jeff
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BillyMac
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Joined : Feb 2008
Posts : 1858
Posted 4/2/2010 2:15 PM (GMT -8)
Goldhorse

you might want to revise what you said. 4+3=7 is a worse diagnosis than a 3+4=7 as it quantitifies what grade cells are predomoninate.

Woodworker,

Like the others I would not make a treatment decision without first speaking to a rafiation oncologist. You cannot have to much first hand information.

Bill

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Ed C. (Old67)
Veteran Member
Joined : Jan 2009
Posts : 2543
Posted 4/2/2010 4:00 PM (GMT -8)
Kevin,
Once my biopsy showed that my PC was Gleason 8, I spent 2 weeks looking at options and decided to have the robotic surgery. I'm lucky that one of the best robotic surgeons lives in Austin Texas where I live and happens to be my son's neighbor. I didn't want to spend too much time researching further while my aggressive cancer keeps growing. So far, I don't regret my decision.
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gold horse
Regular Member
Joined : Nov 2009
Posts : 366
Posted 4/2/2010 5:08 PM (GMT -8)
Billy Mac it is my understading that (3+4) is worse than (4+3),but I may be wrong let some of the brothers provide more info.yeah
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Cajun Jeff
Veteran Member
Joined : Mar 2009
Posts : 4175
Posted 4/2/2010 5:15 PM (GMT -8)
The first number indicated the most dominent found. IE 4+3=7 is more agressive then 3+4=7.

Cajun Jeff
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gold horse
Regular Member
Joined : Nov 2009
Posts : 366
Posted 4/2/2010 5:19 PM (GMT -8)
thanks I look the gleason againg (4+3) is worse.yeah

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/2/2010 5:21 PM (GMT -8)
gold horse, you do have the combo's in reverse. most would consider a 4+3 Gleason 7 potentially more serious and a 3+4 Gleason 7, because the 4+3 is made up of more "4" cancer cells than "3". The "4" cells generally are more agressive and unpredictible in nature. There was a time when it was thought that the combo didn't make much difference, but even in the past year, more emphasis is being placed on the 4+3 Gleason 7. There are even some experts, that feel like any Gleason 7 should be treated as if it were a Gleason 8, because in either combo, there is a danger of any amount of "4" cancer cells.
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