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Di VInci Surgery scheduled

Hello:

I am a 51 years old, had my first PSA test 6 weeks ago to my horror it came back at 10. Had a biopsy and of 12 cores cancer found in 2 (Gleason 7). From my research and what the Uroligist is telling me I should start treatment ASAP. I looked into the Di Vinci Surgery and have schedulde surgery for May 8th.

I am terrifed of the possibility of ED and diapers from the surgery. Am I rushing to a treatment too soon?

Wilbert Wilson

Re: Di VInci Surgery scheduled

Wilbert,

You ask the question Am I rushing to a treatment too soon?

The simple answer is YES, YOU ARE

I can understand only too well how you are feeling. Most of us felt that way when we heard the the word 'cancer' applied to us. Which is why I set up this site. I don't know if you went to the opening page of the site? If you did not do that, can I suggest you hit the DON'T PANIC button and go through the site page by page to gain the information you need to start gathering before making a life changing decision.

The key points you sould know now are:

1. No decision should ever be made on the basis of a single PSA test. A PSA level of 10 is a little higher than what is regarded as 'normal' but is not in itself much to worry about - see PSA 101

2. The fact that only two of your biopsy needles are positive is a good sign because that is one of the items in definitions of low risk disease.

3. Your Gleason Score should be checked by an expert pathologist before you make a decision - see RECOGNISED EXPERT PATHOLOGISTS. Dr Scardino, a recognised expert surgeon recently said that about 30% of the prostates removed at Slaon Kettering were found, after the operation to have either no cancer cells or cells that would never have threatened the life of the man. Make sure you need treatment.

4. The Active Surveillance studies have shown that a delay of weeks, months or even years with a diagnosis similar to yours will not affect the final outcomes.

So, all, in all, take a deep breath, reaise that you are not in great danger right now and get down to learning some of the facts available. You may in the end decide that surgery is your best option: you may decide that the surgeon you have selected is the most experienced surgeon available: you may choose any of the other options. But the point is that you should choose an option that suits YOU based on your personal situation and diagnosis, not one that you have rushed in based on your fear of the word 'cancer'.

Good luck whatever path you choose.

Prostate men need enlightening, not frightening
Terry Herbert in Australia

Re: Di VInci Surgery scheduled

Terry:

Thank you for this site. I live in Southern California. The surgeon that I talked to is Dr. Kirk Tamaddon. I just founfd a post on your site were 3 brothers were all operated on by him.

I forgot to mention that I have also consulted with a Radiation Oncolgist who becasue of my age recommended the DiVinci Surgery over radition treatments.

I did have a second PSA with the same results (10).

Re: Di VInci Surgery scheduled

At 54yoa, my initial PSA, May 2006 = 29, DRE normal (T1c), Gleason, Oct 2006 = 3+4. 1st Lupron Nov 2006, IMRT, Jan-Feb 2007, Brachy late Mar 2007. Discontinue Lupron Nov 2008.
I agree with Terry in that I would advise that you not hurry into treatment. From my initial diagnosis it was six months before any treatment started. Currently my PSA is at 0.06.
Where I disagee with Terry is that you are probably not a good candidate for WW or AS due to your fairly high Gleason score.
Have you gone through any additional testing yet such as bone scan, Cat scan, or free PSA? These tests, while not conclusive, could rule out the need for a specific treatment. Then again they could be worthless but they just might shed some light on your case if in the event they show metastases.
Your fears are not unfounded, however if you jump right into surgery, you might find out later that you're back on the radiation table under the influence of ADT and prolonging treatment.
It's time for you to become a PCA activist, take control of YOUR life and research all alternatives. Nomograms, side effects, your age, and other factors all can point you in the best direction to make sure that in the worst case scenario you die with the disease and not from it.
A very stressful time in your life I know, but the better you educate yourself the better your chances of leading a long and prosperous life. - p (Alaska, USA)

Re: Di VInci Surgery scheduled

Patrick,

You say

Where I disagee with Terry is that you are probably not a good candidate for WW or AS due to your fairly high Gleason score.


Can you point out where I said that Wilber was a good candidate for WW or AS?

What I said was:

So, all, in all, take a deep breath, reaise that you are not in great danger right now and get down to learning some of the facts available. You may in the end decide that surgery is your best option: you may decide that the surgeon you have selected is the most experienced surgeon available: you may choose any of the other options. But the point is that you should choose an option that suits YOU based on your personal situation and diagnosis, not one that you have rushed in based on your fear of the word 'cancer'.

No mention of Watchful Waiting or Active Surveillance there, even though some GS 7 men shoose these options quite successfully.

Prostate men need enlightening, not frightening
Terry Herbert - diagnosed in 1996 with GS 7 and still going strong

Re: Di VInci Surgery scheduled

I would say you are a case that should be rushing to surgery ASAP. You just might catch it in time so that you are in the hospital one night and never have to worry about prostate cancer again.

Diapers - only if something goes wrong during surgery. ED probably yes but with luck and viagra/cialis everything returns to the new normal.

Just make sure you get a surgeon that has done a few hundred robotic surgeries already; if they are using a robot then they probably have a very experienced team.

Re: Di VInci Surgery scheduled

Was your Gleason 3 & 4 or 4 & 3?

I might moderate my ASAP if you are 3 & 4.

Re: Di VInci Surgery scheduled

I made a mistake my score was 4 & 3

Re: Di VInci Surgery scheduled

Frank,

I'd be very interested in your reason for saying Wilber ....should be rushing to surgery ASAP. You just might catch it in time... Prostate cancer doesn't suddenly 'jump' out of the gland. The version of the disease which Wilber's diagnosis indicates takes many years to develop and many years to become a threat.

You also say ED probably yes but with luck and viagra/cialis everything returns to the new normal.
All published data shows that for most men there is no return to normal erections and normal sexual activities. To tell a man anything else is to mislead. Some men never recover their erectile ability without implants; some recover an erectile ability without the use of drugs like Cialis and Viagra; the majority need help from these drugs and VED (vacuum erectile devices).

There are often also minor side effects such as those discussed in the recent MINIPOLL

I am posting this, not to frighten Wilber, or anyone else off surgery but to ensure they uderstand the issue.

Prostate men need enlightening, not frightening
Terry in Australia

Re: Di VInci Surgery scheduled

Terry, I'll just argue the first point for now.

If one has their prostate removed before the prostate cancer has spread outside of the prostate then they are cured of prostate cancer (my friend's situation).

If one has their prostate out too late (my case) then the cancer has already spread out to the rest of their body.

If you have prostate cancer then there is a point in time that if you have your prostate removed you can be cured and after which you cannot be cured. So there is a day at which the cancer does "jump" out as far as a cancer patent is concerned.

A good example is of myself and my friend. We both probably got prostate cancer at the same time. His doctor caught it in time and he has been cancer free for more than 5 years. My doctor dithered a bit and now I will be going from treatment to treatment to keep the cancer under control; although the cancer may not directly shorten my life if we can get a few more advances in prostate cancer control.

If someone had a Gleason of 4 & 3 they would be very very close or already past the point where an operation may result in a cure. That is why when I was in this exact situation I demanded the operation ASAP (after studying as many papers and nomograms as I could find in 72 hours) but for me it was already too. late.

Re: Di VInci Surgery scheduled

Just a couple of points of clarity, Frank.

1. You say If one has their prostate removed before the prostate cancer has spread outside of the prostate then they are cured of prostate cancer (my friend's situation). This statement simplifies the issue. Many of the men who have surgery (about 25%) will have biochemical failure, which is to say the cancer will not be ‘cured’ . Some of these failures will occur 20 or more years later. That is why every man who has surgery, including your friend, I am sure continues to have PSA test for the rest of their lives.

2. I used the term jump deliberately to try to counteract the view that many men have is that the disease moves at such a speed that if treatment is not carried out as soon as possible, they will lose the opportunity to treat the disease and all will be lost. Yes, PCa does move out of the gland but with the kind of diagnosis we are talking about here, it is not likely to move at such a speed that it will be in the gland today and out by May 8.

3. If we use the THE PARTIN TABLES and the data Wilber has supplied, we get these probabilities:

Organ confined: 47% (Range 41% - 53%)
Extraprostatic extension: 42% (Range 36% - 47%)
Seminal Vesicle Invasion: 8% (Range 5%-12%)
Lymph Node Invasion: 3% (1% - 5%)

Now Wilber may feel that, if there is a greater than 50% chance of the disease having spread beyond the gland, then surgery may not be the best option for him.

On the other hand, if an expert pathologist downgrades his Gleason Score to say 3+3=6, his results would be:
Organ confined: 81% (79% - 83%)
Extraprostatic extension: 18% (16% -19%)
Seminal Vesicle Invasion: 1 (1% -2%)
Lymph Node Invasion: 0 (0-0)

And he might be happier with surgery as a choice. That’s why we say – get an expert opinion.

There are, of course, no guarantees, but putting this data into the Partib Tables this week or next month won’t change the percentages.

Prostate men need enlightening, not frightening
Terry Herbert - diagnosed in 1996, with GS 7: no initial treatment and still going strong

Re: Di VInci Surgery scheduled

Terry,
There is a lot of information in each of your posts but I will only address my friends situation under section 1. of your post. He really doesn't think of prostate cancer any more, although he does get his PSA tested yearly. He stopped worrying about it enough that he couldn't even remember his last PSA test result. He knows he has a greater than 99% chance that he won't ever get a recurrence now that it is 5 years after his operation. That is the situation I was hoping for but I waited too long before I got the operation.

I think we both agree that one gets biochemical failure because some prostate cancer cells had already escaped from the prostate before it was removed. If low grade cells escaped it may not cause a problem but if high grade cancer cells have escaped then you will have problem.

There also seems to be the possability that your body can control and sometimes kill these prostate cancer cells which makes it hard to predict what will actually happen for an individual case.

Re: Di VInci Surgery scheduled

Frank:

I thank you and Terry for the advise. At this point I think I am leaning towards proceeding with the surgery on May 8th. My wife and I have discussed the consequences (ED). She has been wonderful through this.

I do not really want to take a chance on any cells escaping. I hope its not to late. I have not had any other tests (CT, bone scans). However I will ask the Urlogist about these tests before proceeding.

I am hoping for the same results as your frinds 5 years from now.

Wilbert Wilson

Re: Di VInci Surgery scheduled

Wilbert sorry to be blunt but you are rushing all this. Read this site over and over and read Terry's history very carefully.

You must get second opinions about the biopsy pathology. Your grading could be wrong - one way or another. I rushed and got all the side effects and still don't know if I am "cured" as I am supposed to have PSA tests every 3 months. (So now I am doing Active Surveillance just like I would have been doing with a prostate!)My operation was in August 2007. My surgeon is a top guy and he said when we get this out you can put all thoughts of cancer behind you - yeah, right!

A leading urologist told me that my post operative pathology showed that I was one of those guys who probably had insignificant cancer.

Be careful Wilbert. If I were you I would cancel that May meeting with the robot. You can meet him later if you want to but frankly my friend you don't know enough yet to take that decision.

Ted from England

Re: Di VInci Surgery scheduled

Joe:

One more question. Since your surgery have you suffered from the side effects (ED, etc.) ?

Wilbert Wilson

Re: Di VInci Surgery scheduled

I've had no trouble with incontinence after about the second week. ED problems were getting better (with cialis) and almost back to "new" normal after about 3 months. Terry rightly points out that the "new" normal is not like it used to be. You ejaculate either nothing or often a bit of urine.

Unfortunately I've now had radiation and am on hormone treatment so ED is not a frustrating issue for me becuase you don't think of sex much when you are on the hormone treatment.

As far as my decision making process on whether to get treatment or not: I have been happily married for about 35 years so we were quite willing to risk giving up intercourse (which wasn't the case) if it meant I'd be alive for another 25 years or so. My decision might have been different if I was single but I don't think so.

Re: Di VInci Surgery scheduled

Aloha Wilbert Wilson,
Actually my starting conditions were beyond what is normally recommended for surgery. The chances were too great that the PCa had left the prostate (12 of 12 cores, 4 to 70% PCa), although nothing beyond the prostate was detected by testing. My urologist recommended EBRT/IMRT and 3 years of ADT. After one year of ADT I asked to stop because of pain at the injection sites (still have that pain 2 yrs later). The EBRT/IMRT ultra-sound guided, damaged my colon, rectum, anus, urethra, the two sphincters, and the bladder. These problems are difficult to live with. I was just one of those 10% who got more than their fair share of side affects. At present, the penis is very functional, and I am alive. There is a very good chance that the PSA test and PCa treatment saved my life.
Keep in touch, let us know how you are doing. If you have doubts about treatment, get help, talk it out.
Hamakua Coast, I love it,
Joe

Re: Di VInci Surgery scheduled

Joe,
I just noticed your comment about the injection site pain. I've been getting Zoladex shots monthly and all the injections caused no problem except the last one when the Doctor seemed to hit something which caused extensive bruising and soreness. You might try a different area for the injection, a different LHRH drug or a different amount of the drug (one month instead of three).

Re: Di VInci Surgery scheduled

Thanks Frank,
Have researched this topic a lot. If I go that route again (only one year of Lupron)I will request the one month or less shots.
Joe

Re: Di VInci Surgery scheduled

Aloha Wilbert Wilson,
I think that you are rushing into a surgery and I agree that you have plenty of time (many months) to make your decision.
Please read
http://prostatecancerinfolink.net/2010/04/05/quality-of-life-after-first-line-treatment-a-prospective-comparative-study/
Take a copy of this abstract to your urologist to ask questions and discuss.
Also, please look up/find your local chapter of "US TOO" at cancer.org. Go to a meeting and talk to other men who have had surgery. Life after prostate cancer treatment is never the same. PCa treatment is a life changing decision. Take the time now to understand what you are getting into with treatment.
Getting control of your emotions is a first step toward understanding what is going on in your body. The more you understand what is happening to you the less emotional fright you will have and the better decision you will eventually make. It is your decision. As Terry says, take your time, understand your decision, and with understanding, go for it.
Hamakua Coast, love it,
Joe

Re: Di VInci Surgery scheduled

Joe:

Thank you for the advise. As I had never been screen before I do not know how long this cancer has been there. The Urlogist told me it was stag T1b.

With my PSA of 10 also that is why I am concern about this spreading.


Wilbert Wilson

Re: Di VInci Surgery scheduled

Aloha Wilbert Wilson,
Please understand that PSA test results are only an indication of many possibilities that are different for each man. My PSA started at 8 and rose to 14 over several months, this with 12/12 cores showing cancer was not good. Your PSA seems to be steady, and as Terry points out this is very good news for you. I have friends with PSA's that are very high, but no cancer. If you read more on this site, you will find that even low PSA's (like 3 to 4)for men with bad cancer. You need to look at and evaluate all the available data that applies to you. Test, Test, Test, then get second & third consults. If you consult a urologist, surgery will be recommended. If you consult a radiologist, radiation will be recommended. In the long run, if you choose surgery, the type of surgery, open or robot, makes no difference in the outcome. It is only the skill of the surgeon that makes the difference. I'm referring to the quality of life after surgery.
Joe

Re: Di VInci Surgery scheduled

Hello Joe:

I did consult the radiation oniclogist and I was suprized the she did not reccomend radiation theatment in my case. She stated my age for not recommending radiation. From what I here that is unusual as most Doctors will steer you towards there specialty as the best solution.

I have a friend that was diagnosed one month before me. He choose Cryosurgery. He had the cryo 3 days ago have not talked with him since the treatment.

I was never one for Wishful Waiting as I would know that these cells could take off at anytime then it could be too late.

There seems to be no correct answer its what you as a Pc paitent can tollerate or live with.

Wilbert Wilson

Re: Di VInci Surgery scheduled

Slow down. I had all twelve cores like Joe positive, but I got a second opinion with my biopsy. I then used all the nomograms to position myself in regards to what my chances were with different treatments. I also thought all this through myself, and discussed it with my wife, family and friends. And then I thought about the consequences of surgery. ED is no joke, believe me, and there are stories on this web site about ED and incontinence that would put you off surgery completely. Read them and understand that your decision is irreversible!

There are other factors to consider in regards to your biopsy. You have not mentioned any type of carcinoma. I had cribriform sheeting, which can show a more aggressive form of cancer.

Get an independent second opinion, and good luck.

Re: Di VInci Surgery scheduled

You said.

Am I rushing to a treatment too soon?

But then you said.

I was never one for Wishful Waiting as I would know that these cells could take off at anytime then it could be too late.

So it sounds like you already made up your mind before you asked the first question, so I'm not sure how anyone can help you with this.

Re: Di VInci Surgery scheduled

Wilbert,

Interesting discussion. I was diagnosed Feb. 16 with a normal PSA and a Gleason of 6. My father died of prostate cancer in 1998 after having surgery, radiation and finally hormones. His quality of life was greatly diminished after the surgery. I am a firm believer that PCa is genetic. Also, from everything I have read and everyone I have talked to, the disease moves very slowly and if the cells are going to spread, it really does matter which treatment you select.

The standard responce to the diagnosis is if you are under 60 surgery is the only way to go. If you look at the numbers it doesn't matter what treatment you choose at your stage, the survival rate is about the same. It is pretty much better than a 90% of greater than a 10 years. What you have to ask yourself is, how do I want to live out the rest of my life. I asked a doctor once why surgery is the perferred treatment (he was a surgeon) and why it is the most common treatment and he said "people just want the cancer out". In reality all of the tissue can never be removed. That is a fact supported by literature.
Go to the Internet and watch a video of the surgery, both open and D'Vinci. I wasn't thrilled by what I saw.

I have been to the urologist and the radiologist and they both gave the standard answer. When I asked what the survival rate was they said it is the same no matter which procedure you pick. The only issue was the order. If you did the radiation first you can't go back and do the surgery, but you can go forward and do hormones or any other treatment available.

I have one more consult coming up on May 4 at Loma Linda to discuss Proton treatment, which is a targeted form of radiation. This is also available to you since you live in southern CA.

You have to do what is right for you, but look at all the info available on this site before being pushed into something just bacause it is the "standard of care"

Good Luck,

Greg

Re: Di VInci Surgery scheduled

Greg:

I too have consulted with Loma Linda regarding the Protron Radiation Treatment. I am in a fight right now with my insurance to provide this treatment.

I have not seen the surgery Video. I will research it.

I am glad to hear that you have no Noticable PSA. Unfortunatly my PSA was 10 so I really would like to move quick.

I still have the surgery scheduled for May 8th. But will take a look at the videos as you suggested

Wilbert

Re: Di VInci Surgery scheduled

Wilbert,

I am scheduled for a consultation with LL on May 4 with Dr. Rossi. My insurance has turned down proton therapy, but they have approved the consultation. I assume they want justification for pursuing this therapy, which I will give them after my visit with Dr. Rossi. As long as he can do this, they should approve. I will let you know what he has to say.

I just finished reading Bob Marckini's book and I would highly suggest you do that before your surgery. I would be happy to borrow you mine if you can not get one that quickly. The main symptom he had was a rising PSA. He puts together a very non-bias description of the process he went through to evaluate his diagnosis.

In the end you still need to make your own dscision. I wish you well.

Greg

Re: Di VInci Surgery scheduled

Greg:

I have just read Bob Marckini's book as you recommended and I have previoulsly also read Dr. Patrick Walsh's from John Hopkins.

Each book says that there treatment is the best(?). My main symptom is also a high PSA.

I have an appointment on May 4th with my Urologist for the pre surgical workup and examine. As I mentioned the surgery is scheduled for May 8th. My urlogist Dr. Tamaddon has done around a 1000 of the Di Vinci procedures at Kasiser in in West L.A. so I am not concerned about his experence with the procedure. I know it will be an uphill fight with Kaisier HMO to get them to pay for the Prothon treatment. In the mean time the PCa could be spreading.

Before I comment ot surgery I will discuss this Prothon treatment otption at my appointment on May 4th.

Wilbert

Re: Di VInci Surgery scheduled

Wilbert,

Yes, you are moving too fast. Yes, your PC may be spreading, but likely not so fast that you cannot take the time to understand the outcomes.

On April 18 I got the results of my PSA. On May 14 I had my biopsy. On July 7 I had my surgery. I moved too fast.

I now believe that you should not be hoping that or counting on the experience of your doctor to somehow beat the numbers. Already now, even before surgery, you should be planning on how you will deal with ED. It is easy and reasonable to say, "get the cancer out, we'll deal with the rest as it comes." It is wonderful that you have a supportive spouse. So do I. But I will tell you, ED hits you harder than you even now can fathom. I'm cancer free since the surgery--and there are days that I want my prostate back, even diseased, I want it back. The absolute frustration of ED is a daily thing. The depression that comes with ED is real.

You're running on fear. We hear "Cancer" and it ramps us up like few things can. I know, I had a front seat on fear's roller coaster ride.

My doctor was great, one of the most experienced in the area, working out of one of the best facilities in the area. Both nerve bundles were spared. Surgery was uneventful, recovery was uneventful. I am no longer in diapers, pads are still a once and awhile safety net. While mostly continent, I think about, plan, and leave allowance for peeing every day. I can't drink a glass of water without taking into account when or where I will be when I have to pay the price.

Wilbert, it is not if you will be incontinent, but for how long and to what degree you will get something back that you can count as control? There will be a new "normal"--what can you live with. It is not if you will have ED, but what is your, and your doctor's plan to deal with ED?

Wilbert, you ask if you're moving to fast, guys have been giving you great answers, but it doesn't sound like you are listening when they say "yes, you are." I understand. I didn't want to hear either. I wanted guys to say, "no, run and get your operation," and when they didn't agree with me, I didn't listen either.

Read my entry on the experience page. I am more like your experience than not. Had I to do it all over again, I would rather deal with the diet and testing regimen of active surveillance than what I am dealing with now.

Stop, slow down, listen.

Peace,

ScotK

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