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Posted 4/5/2012 12:23 PM (GMT 0)
DX 49 - PSA 3.56 (long term propecia use, so that's kept it low)
Slow rising PSA from 1.5 in 2008
Free PSA 2%
Gleason 8 (3+5) one core, 10% - 15%, out of 13 - all others clear.
Bone and CT Scans clear.

So those are my stats and I'm seeing a great Surgeon and after getting my scans I'm about 80% there with surgery - the only thing that keeps stopping me from getting to 100% is seeing all these stories on here and other boards (also YANA is very useful for this) of guys that have surgery and within months have to start radiation because surgery didn't work. And these are guys with clean margins and G6's and G7's - so here I sit with an 8 and I have to wonder.

I've tried the various namograms and it shows progression free at 5 years to be 95% and 10 years to be 92% - and that's if I double my PSA just to be safe to account for the propecia. I assume that means with no other treatment - that sounds like good odds, but when I look on sites like YANA it sure seems more like a 40% cure rate.

My doctor says there are some small studies that have shown patients have done better after a recurrence if they had the prostate removed - I guess the thinking is the main gland that housed the tumor is gone so you're only dealing with escaped cells, I can sort of see the logic.

My other thought is that since this is aggressive - and 8 - I should throw the kitchen sink at it and go full out - have the surgery and then have back ups, radiation, chemo, ADT, etc.

Are there many of you out there that wish you had NOT done the surgery?

Thanks guys - this really is one of the toughest decisions - there's really no going back. I second guess buying a pair of shoes, I don't want to have to second guess this.
Posted 4/5/2012 1:02 PM (GMT 0)
Regret surgery? Not for a second! (Even with my now wonked winkie.)

My PSa was 23, biopsy 7/12 up to 70%. Surgery was an iffy proposition with my stats, but, as an engineer, I liked the thought of "Fix it! Now!" I most likely ran through the same nomograms as you and (after I finished throwing up) decided the odds of success were almost the same whichever way I went.
I was in good shape. All of my parts worked exceedingly well. I was not overweight, never smoked, or abused drugs or alcohol. I figured all those years of clean living would work in my favor for a successful surgery. I also figured, despite the warnings and the data, the side effects would not happen to me. They are reserved for the guys who smoked. Wrong.
I have since learned that incontinence and ED can be fixed.
I am approaching 3 years. I have ED and an occasional drip or two in my undies. But, my PSA is <0.02. Regrets? Nope!

Peace of mind is GFMPH. I wish you the same.
Jeff in NY
Posted 4/5/2012 1:40 PM (GMT 0)
Gadget,
I was in the same boat as you last year. My biopsy results were worse than yours. My thinking was get it out! While ED and incontinence are issues, I'll take them over not knowing what the pathology of my tumor . I'll start adjuvant radiatin in the next few months, but it does improve the odds of recurrence. I can't remember what your Gleason scores are, but a lot of guys have surgery and never have a recurrence. Good luck with whatever you decide.
Posted 4/5/2012 2:44 PM (GMT 0)
Diagnosed at 44 and had RRP by who everyone in the are said was the best guy for thew job anywhere in the area..... I had no ED at all prior to this and still at 18 months have severe ED...I regret having open RRP I wish I had Robotic done is my only regret. All the guys I know in the area who had the robotic done have full function back. BUT despite the ED I still do not regret the surgery to get rid of all the cancer! PSA still 0.00
Posted 4/5/2012 2:44 PM (GMT 0)
No - with what was known about my situation at the time (2008), never had a regret about having surgery. The notion of "debulking" the cancer load still makes sense to me, as long as the doctor feels up front, that the cancer is still contained to the prostate. And no one really knows that 100% for sure upfront.

As far as risks, there are risks and side effect issues associated with any primary treatment choice, regardless of what studies and nonograms indicate. It still comes down, to each person reacts differently to treatments and procedures, and each case of PC will react on its own accord.

For the men fortunate enough to entertain AS as an option, I say they should strongly consider it. If one is dealing with an "entry level" case, say with one positive core, Gleason 6, etc, having immediate treatment may not be in one's best interest. A person just has to come to terms with their situation, and realize, that in those situations, its unlikely that any delay with AS isn't going to endanger their life.

When you get into more serious dx, multiple cores, high percentage of cancer in the cores, G7's and above, treatment is definitely needed, but even then, a rash quick decision would rarely be in the best interest of the patient.

David in SC
Posted 4/5/2012 2:48 PM (GMT 0)
No regrets. And that's even without the bonus that I had as my post-op pathology showed that things were worse that the biopsy had predicted, (specifically seminal vesicle invasion, tumour in the bladder enck rather than the up grade from a 6 to a 7.) hence I needed SRT within a year of surgery. (And the SRT worked!)
However, had I opted for RT first, then on the basis of the biopsy they would not have suspected SVI and might perhaps not have targetted the right area(s).
And if I had opted to wait, then clearly that might have been a bad call in my case given the PCa was already on the move from the gland.

Have you had a second opinion about your biospy slides as a 3+5 is not that common? (ie where's the 4)
Alf
Posted 4/5/2012 3:14 PM (GMT 0)
Thanks guys for the responses.

Alf - I'm actually currently waiting on a second opinion on my biopsy - sent my slides to John's Hopkins. That was the first thing I wanted to validate - the 3+5 surprised me too, I also don't have a clear idea of how much 5 are we talking, I know it's small since my one core says 10% to 15% involved, so the 5 would have to be less than 7.5% or my numbers would be reversed.

It helps to hear from guys that don't regret their surgery - I'll still meet with an Oncologist to get a rounded view, but I do like the idea of at least starting with a clean base - getting it out sort of speak. I also wonder if we tend to hear more from people that have had issues on various message boards - you know it's the same on any message board, you usually don't take the time to write if all is going well, there would be more guys writing when it didn't work and they're looking for options.
Posted 4/5/2012 3:36 PM (GMT 0)
No regrets here either. I was Dx with G7 with 2 cores of 15% and 20% cancer cells. I looked at RALP, seeds and EBRT but my wife and I made the decision to do RALP. For me peace of mind was my pathology after surgery that my tumor which was 60% of my prostate was 100% organ confined and I have 9 months of undetectable PSA.  I was 100% continent at 3+ weeks. I do have bad ED  but it gets better the farther I get from my surgery.  I actually feel better now than I did for years before my surgery. I joke that I can pee like a teenager again just not have sex like one, but I am now 62 and my best sexual years were behind me anyway.

IMO the key is finding a surgeon and a URO practice that has tons of experience in RALP's. My surgeon had over 600 of them and is averaging 3 to 4 a week, his practice has over 5000 RALP's total and they are doing some different new stitching techniques that have added to much lower incontinence stats. A friend of mine who used the same URO practice but a different surgeon was 100% dry the day his catheter was out.

Posted 4/5/2012 3:47 PM (GMT 0)
gadget

My only regret is that I hadn't discovered this site right after diagnosis. We sold our house in California right before diagnosis in April. We moved to Maine after buying a house long distance. We had looked at the property the previous summer. So a lot was going on. We moved to Maine in May of 08 and I had the Da Vinci in July. With hindsight I probably moved a little to fast with too little knowledge. You are going to be in a good position knowledge wise. Good luck.

Jim
Posted 4/5/2012 4:58 PM (GMT 0)
Gaget,
Wrong question to ask. It's like asking someone if they bought the wrong car. Cognitive dissonance is a term that advertizers know well, as it is normal that once a major decision is made one is unlikely to regret that decision and search for confirming imformation that supports that he made the correct decision and rejects all information that suggests he made a bad decision. So asking someone if he made the correct choice is a garantee that you will get a biased response.
With a low volume tumor, even if it is high grade, any of the conventional treatments will most likely have similar results. One can find evidence to support any of the treatment options in your case in regards to cancer cure. There are differences in side effects and recovery time for each option and you would be wise to put more time in exploring these and deciding which you can live with long term.
JT
Posted 4/5/2012 5:00 PM (GMT 0)

gadget said...
the only thing that keeps stopping me from getting to 100% is seeing all these stories on here and other boards (also YANA is very useful for this) of guys that have surgery and within months have to start radiation because surgery didn't work. And these are guys with clean margins and G6's and G7's - so here I sit with an 8 and I have to wonder.

I've tried the various namograms and it shows progression free at 5 years to be 95% and 10 years to be 92% - and that's if I double my PSA just to be safe to account for the propecia. I assume that means with no other treatment - that sounds like good odds, but when I look on sites like YANA it sure seems more like a 40% cure rate.

Folks that get "cured" tend to move on more than folks that get the short end of the statistics, and I think that accounts for a lot of what you are seeing in terms of what's posted.

Just over 5 months, no regrets, ED fading, may even be drying up finally. Far too early to know if it's "cured" (one PSA <0.1 in the bag) but took the best shot at that, have options remaining if it failed. At two years younger than you, that last one is a big deal to me - there is a long, long time for "further issues" to develop, and surgery as primary leaves the most options on the table. Also, recovery from surgery is generally good at our ages.

Anything (including nothing) is a dice roll, and you can (& plenty here have) come up on the short end of the stick - but that end of the stick really is a lot shorter than a casual survey of postings on boards might lead you to think.
Posted 4/5/2012 5:22 PM (GMT 0)

Gaget

My biopsy results were a lot more minimal, which made my decision hard.  When my pathology report came in worse than I thought, I was very happy that I had chosen surgery, so I knew the extent of my cancer.  As my surgeon stated, "The best thing is that your prostate is sitting in a jar of formaldahide now!"  They also prepared me for the realization that I may need some radiation to mop up what had gotten out, which I ended up doing.  While the radiation probably killed all the nerves my surgeon sparred, it also took care of the cancer.  It's been almost 5 years since I finished radiation, and I'm still getting zeros.  I finally tried injections for ed, which have been successful - something I should have begun right away. 

I am one of those who don't "hang around" this site as much as I did when diagnosed and treated.  My success is not having to think about prostate cancer much any more, but look forward to a long, cancer free life.  I feel that chosing surgery for my first treatment started me on this road.

Good luck on yours!

Posted 4/5/2012 5:36 PM (GMT 0)
For me one of the toughest things about this disease is the second guessing and the large number of options open to me. It is almost impossible to know for sure what treatment to try. I chose EBRT and even though that seems to be working out fine for me that are days I wonder if I did the right thing.

My brother who has about the same numbers as me chose surgery and is doing just fine a year later. So far in my family either surgery or radiation are working as treatments. Which was better? Can't say with positive scientific evidence.

The only thing I know for sure is that I made the best decision at that the time and am hopeful that it was the right way to go.
Posted 4/5/2012 6:15 PM (GMT 0)
regret? oh no... Here I am in Paris taking a break from a full day of walking around this wonderful city. Having a romantic getaway with the wife 14 months post surgery. But sure, I'm lucky given that i'm no different today then I was pre cancer and that as of now, also cancer free. However, even if things would have gone differently, I would have wanted surgery for a full pathology.

When considering radiation I was concerned about long term effects such as the ones my recently deceased sister in law encountered. That's something I might have regretted.

I regret getting cancer.

I'm sorry people are telling you you're asking the wrong question. You are asking the perfect question for someone heading into major decision. Peer experience is great help and nobody, or perhaps, almost nobody, is trying to sell you their beliefs.

John - Maybe you always purchased an Audi, or a BMW, but I know a ton of people who regret past/present car choices, me included.
Posted 4/5/2012 6:36 PM (GMT 0)
Gadget, I was faced with a similar situation like yours. I had the choice of radiation or surgery. I had 2 out of 12 cores positive Gleason 8 (4+4). I opted for Da Vinci robotic surgery. I'll never regret my decision. My PSA is <.01 after 38 months. I hope to stay in the zero club for the rest of my life.
Posted 4/5/2012 6:57 PM (GMT 0)
David,
I've had Audis and BMWs and now have 2 SUVs and a one ton truck. I never made a bad decision on anything I purchased, or so I believe. If I would have had surgery I most likely would have had a reoccurrance, ED or incontinence, and would be telling you that I made the correct decision.
Gadget"s stats indicate that surgery would work just as well as Brachy or IMRT. If he had a much larger tumor with a higher probability of extra capsular extension radiation would have an edge. His younger age makes a recovery from surgery much better than a 65 year old would have, but the flip side of that is that ED and incontinance is much harder on a younger man. Any decision he makes would be the correct decision if everything turned out as planned and the odds are on his side.
Posted 4/5/2012 6:58 PM (GMT 0)
My wife and I made the decision together

No regrets... I wanted that mass out of my body. The thought of walking around knowing it was there... no thanks.

Think of it as a head start to winning the race... better to be ahead of it than chasing it.
Posted 4/5/2012 7:28 PM (GMT 0)
I hope that you have at least explored all your options and met with a couple of the best surgeons and radiation doctors you can find. There are no do-overs. My wife initially was all for surgery, but after meeting with surgeons and radiologists she thought BT was the way to go. You can read what I went through by clicking on the link in my signature.

On a side note, Purg, your post confuses me. You post here that:

"No - with what was known about my situation at the time (2008), never had a regret about having surgery. The notion of "debulking" the cancer load still makes sense to me, as long as the doctor feels up front, that the cancer is still contained to the prostate. And no one really knows that 100% for sure upfront."

and yet I have seen you post that had radiation been an option for you, you probably would have gone that route. Although I guess you can have it both ways...no regrets for having the surgery, but radiation would have been your first choice.
Posted 4/5/2012 7:49 PM (GMT 0)
Gadget, here I am, 13 months after my RARP, and I have no regrets. The factors contributing to my decision included wanting to get the darn cancer out of me; wanting to know the real, accurate biopsied extent and grade of the cancer, and feeling that I was too young for radiation of any sort. At 52 yrs of age, thinking I could burn some tissue was terrifying. Likely if I was 72, one of the radiation iterations would have been my choice.

Indeed, it was always understood that if my surgery failed, radiation options were still open to me. The reverse is generally not true.

My pc journey would be, as it is for most, an afterthought by now. I do continue to check this site, as I remain interested in the journeys of a number if the men here who were supportive and kind when I needed it. And it goes without saying that I want to keep tabs on Purgatory, as he remains in my thoughts and prayers.

Good luck and don't second guess whatever decision you make.

Dave
Posted 4/5/2012 7:53 PM (GMT 0)
Gadget,

My biopsy was similar to yours, one core 5% Gleason 8 (4+4). But you are smarter than I was and you are getting a second opinion. After removal I was a 3(80%)+4(20%), to me a big difference. I don't regret the surgery for one second, but if I had known the true Gleason score, I probably would have opted for nerve sparing Da Vinci rather than non nerve sparing open RP. My wife, on the other hand, is a true believer in getting everything, including nerves out and gone. She says that's why I've been less than .01 for 2 years. Apparently, she wants to keep me around!
Posted 4/5/2012 8:58 PM (GMT 0)
Hi, Gadget,
I've never regretted my decision to have surgery, though maybe my options weren't as plentiful as for some folks, With a palpable tumor, I knew going in that I was going to sacrifice one nerve bundle. The prostate was too large for BT. External beam radiation was an option, but the idea of getting irradiated just didn't appeal to me at all.

I'm now over a year and a half post-surgery, feel great, and prefer to think of the PCa experience as something in my past. I realize it may pop up again, but I don't spend a lot of time thinking about that as a real possibility.

I worked at a funeral today for a guy who handled prostate cancer some years ago but finally succumbed to esophageal cancer at age 79. None of us gets to live forever, unfortunately.

I was playing golf 4 and a half weeks after surgery and was fully continent...better than before surgery....at about 3 months. ED is a problem, but my wife and I still have a very active and enjoyable sex life. Intercourse isn't the only good thing that can happen in the bedroom.

I get the sense that people who know me have really forgotten that I had cancer surgery.

Having said all that, each case is different and I'm confident that you will eventually settle on a course of treatment that suits your particular situation. It's nice to have options. Best wishes.
Bill
Posted 4/5/2012 9:07 PM (GMT 0)
Hindsight: My only regret is my surgeon.  My Uro was retiring & recommended this younger guy, who turned out to be rude and... . Also, Da Vinci was not available in our somewhat smaller town & this guy performed open surgery.  Bottom line was total incontinence & impotence.  After 18 months I had to have implants.  Maybe not the fault of the surgeon, but I still "feel" he messed up.  Also, although the lab results indicated the cancer was still contained, it wasn't.  I've now gone through radiation which first psa following indicates psa is down slightly. So if I had it to do over, I'd still have had the surgery... probably... but with a different surgeon.

Gene214 

Posted 4/5/2012 10:32 PM (GMT 0)
Gadget,

I have no regrets with having RP surgery.

I was given several treatment options - open surgery, da-vinci, radiotherapy and hormone therapy. It was always my gut feeling to have the cancer taken out and then deal with anything else as and when.
After surgery the first words to my surgeon were, "How did it go, did we do the right thing?" "Well, he said, I think so, your prostate was chokker block".

I have to say that I sympathise with you, as for me, it was the most difficult decision I have ever made so know just how you feel right now.
It is though, only you that can make that decision and wish you all the best with which ever route you take.

I don't have any issues with incontinence, fortunately from the time the catheter was taken out. I do though, have ED and after 13 months post surgery there are signs of life again, with the help of levitra tablets!

Just as an aside but still on topic for open surgery guys.

What direction was your surgery incision, north to south or a left to right smiley? Just wondered if this makes any difference to nerve sparing for the surgeon? I'm sure I've heard on here of guys saying that their scars were above the belly button. Mine is much lower, just above the penis around the pubic area, left to right smiley. :-)

Chris
Posted 4/5/2012 11:13 PM (GMT 0)
 

Hi Gadget- I also have no regrets, almost 1 yr since my RP, I am dry, feel great, and my ED problems seem to be going away :-) My only issue at this point is my slightly elevated PSA which seems do be from benign prostate tissue left behind from my surgery.

It is a tough decision, I decided against radiation because I saw what it did to my mother, she had rectal cancer and about 10 yrs after all her treatment she has lots of problems.

Good luck to you !!!

Posted 4/5/2012 11:57 PM (GMT 0)
I am close to your stats. I was 48 4 year ago when diagnosed with a Gleason 7. Post surgery it was upgraded to Gleason 8. I have no regrets. Mine post surgery issues is ED and I worry about cancer a lot. Other than that, I am fine. I wanted surgery for several reasons. I am not sure if they all make sense but I wanted the nodes tested, I wanted to be able to do radiaton after surgery (if surgery failed) and I wanted the cancer out of my body. Not sure if that is all scientific but it led to my decision. Surgery is not a piece of cake but it is cancer we are dealing with.
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