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One week out from surgery and feeling very scared....

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Posted 6/2/2011 6:11 PM (GMT 0)

Guys, today I’m feeling very scared.  I continue to read about all the treatment options and although I am scheduled for surgery next week I don’t know what to do.

I met with a new urologist yesterday and as expected he is pushing for surgery.  He is saying that based on my age (49) it’s best to remove the prostate, leaving additional treatment options open if necessary.  He also said they (the urology group he is a member of) do not perform salvage operations after other primary treatments have failed.  Nothing you folks haven't heard already, I'm sure.

I was asking about chances of success and so on and using calculators readily available on the web, he punched in my numbers.  The computer estimated my chance of capsular penetration at 38% and the chances of a long-range “cure” of 82%.  He stressed highly that these are just statistical numbers and are only to be used as an informational resource.  He said every case is unique and I should not rely solely on computer models to try and determine outcome.  He said that the pathology of the removed prostate would provide a more accurate “guess” of what might lie ahead.

What I’m stressing about today is the fact that my one of my biopsy cores indicated a 3+3=6 gleason with 20% involvement in my right apex.  I’ve read that the apex is one of the most critical areas where the surgery is performed because of the higher chances of surgical margins (leaving cancer behind) and that the chances of surgery being successful when the cancer is present in the apex is only 50%.

It’s not the surgery that scares me; it’s the chance that surgery will fail that terrifies me.  Will this nightmare never end?

Posted 6/2/2011 6:21 PM (GMT 0)
That's why I'm sometimes sort oof glad I didn't find this site until AFTER my surgery.  Knowledge is power, but too much knowledge, too much thinking, can lead to paralysis.  You've made an intelligent choice, you've looked at options.  Trust in the skill of  your surgeon and whatever it is...that's what it is.   The hand is already dealt,  you just haven't turned it over to look at it yet, and no amount of worry is going to make it better or worse.  Your odds are good, so go with it.  It's natural to be worried, and it's natural to be scared...we've all been there.  We're with you, and we're pulling for you.  You were probably a bit scared the first time you got on a motorcycle, too, but that turned out OK.  The unknown causes fear. 

Hang in there, HD, and in a week we want to hear a good pathology report.  Think positive and let's hope that all turns out well, which the odds say it will.  Bill

Posted 6/2/2011 6:26 PM (GMT 0)
My Biopsy:

1. Left Lateral base - 3+3, 90%

2. Left Lateral Mid - 3+4, 70%

3. Left Lateral Apex, 3+3, 40%

4. Left Apex, 3+4, 40%

As you can see, you are going in better than what I had.

Posted 6/2/2011 6:41 PM (GMT 0)
Ditto to what Clocknut said. You'll be just fine.

Posted 6/2/2011 6:59 PM (GMT 0)
HD,

I've said before that I did not sleep more than 3 hours any night from the time I got my "ugly" psa to the first night in the hospital (at which point I would have slept through a hurricane). So yes, I was also freaked out.

I'll agree with the information overload. I had not found the HW (or other) sites, and was working from the Walsh book as a reference. As much as I work with computers, I'm not much for the internet.

You have come to a decision. That is good. Since nothing in PCa is absolute, just work on the premise that things will work out great.

 

Posted 6/2/2011 7:09 PM (GMT 0)
HD--

I remember well the pre-surgical anxiety I felt. It's natural to feel the way you do. You did the right thing by first discovering the cancer and second doing something about it by having the surgery. 

Statistics are just that--statistics. You've got analysis paralysis. Given your biopsy results and low numbers, you should do fine. Take care and hang in there!
Posted 6/2/2011 7:30 PM (GMT 0)
HD

As I remember you did not want to even see a radiologist oncologist, so I think you are predisposed to surgery. Therefore you are doing the right thing for you. I would think it is only natural to be scared of the surgery. You said that it is not the surgery, but the fact that the surgery might fail that scares you. That being the case, you always have the radiation to fall back on. I know when I saw my Urologist he said that a positive attitude helps a lot. Stay positive. We are all pulling for you. None of this is easy for any of us.
Posted 6/2/2011 7:46 PM (GMT 0)
Hope and pray for the best, plan for the worst and prepare for a surprise. Its easier said than done. You are doing the right thing, so the best thing to do NOW is to relax, let the surgeons do the surgery and you will heal. One step at a time, please!!!!! What are you supposed to do, jump off a cliff??????????? NOOOOOOOOOO!!!! I think you have alot of strengths but you have to take it easy on yourself!!! One step at a time!!!!!
Posted 6/2/2011 7:57 PM (GMT 0)
HD, absolutely NOTHING for you to be afraid of.....the surgeon does all the work!

The idea is to commit yourself to saying "let's get this over with and done". Put yourself on auto pilot, follow your pre-op instructions to the letter and go to the hospital with a smile knowing you've caught the disease early and are on the path to being free of it.

Here's another thought. A good surgeon (or so I've heard anyway) who begins a prostatectomy and discovers during the procedure that there is cancer outside the gland will sew you up and send you and your intact prostate off to see a radiation oncologist. Assuming your surgeon is of a like-mind, you are in a win-win situation. Nothing to loose and everything to gain. The few days of post-op pain and discomfort are really not a big deal.

Us G6 guys are fortunate. Rarely do we need to contend with the challenges so many others here must. Let their courage inspire you as they wheel you into the DaVinci chamber of freedom!
Posted 6/2/2011 8:30 PM (GMT 0)
HD, I was in your shoes just two weeks ago only with worse numbers going in and open surgery. My gut told me to do this surgery and to do it fast. I had the same odds on the tumor being capsule contained. Pathology showed it was not contained and the margin on the left apex was less than one tenth of one millimeter from the inked margin. Bottom line...I am glad I moved as fast as I did. I did my part, the surgeon did his part, and only God knows what the final outcome will be. By doing the surgery, I know the pathology with certainty and have more options left, if necessary. Because of the close margin I am at higher risk for recurrence.  Of course I hope it won't happen, but if I should have a recurrence, I won't view it as a failed surgery but rather the first important step in my treatment. When I was freaking out someone on the forum told me that worrying is like praying for something bad to happen. That hit home with me. I know it's tough but stay positive as the odds are in your favor. I also had to take a break from reading about PC because it was making my anxiety worse. Knowledge is power but there is such a thing as overload. You've made the hard decision...now stay the course and do your best to enjoy each day. The surgery itself is easier to deal with than the emotional roller coaster ride. Hang tough man...you can do this and you are going to be okay.
-Bob R.
Posted 6/2/2011 9:04 PM (GMT 0)
HD, a few nights before my surgery my surgeon called and talked me down off the ledge. Thank God he did. The surgery was a piece of cake and I loved the catheter. First time in years I could drink all I wanted at bed time and sleep the night through. Amazing.

It's easy to say, 'don't worry,' and impossible to take the advice. Nevertheless there is a time to fish, or cut bait. You've made your decision and you say you're not worried about the surgery as in being awful, or worried that it's the wrong treatment, just that you don't know the outcome. The outcome is what it is, and worry won't change it. Clocknut put it perfectly:

"Trust in the skill of your surgeon and whatever it is...that's what it is. The hand is already dealt, you just haven't turned it over to look at it yet, and no amount of worry is going to make it better or worse. Your odds are good, so go with it."

And he also said, "It's natural to be worried, and it's natural to be scared...we've all been there. We're with you, and we're pulling for you."

Clocknut nailed it.

Come the tenth you're going to be a happy camper as you roll out the other side. In the meantime, the next week is why God created alcohol -- not only does it make waiting easier it has antiseptic properties when, on your fourth/fifth drink, you spill some down your front.

Sheldon AKA Sleepless
Posted 6/2/2011 9:17 PM (GMT 0)
John, I may get blasted by my HW breathren for this response but here goes anyway.

First of all, with your stats, it is likely that the surgery will be curative and that you will be ok.  So, if you think you are just having pre-procedure anxiety and not true second thoughts then you should go ahead with some confidence.

However, unlike others here I don't think the hand is dealt until the anesthesia kicks in and you're unable to say no.  If you really are having second thoughts then you should consider talking with a radiation oncologist about brachy + IMRT that cleans up the stuff around the edges the first time.  And/or you should consider getting a color doppler scan to see if that can give you more info about your apex tumor and the chance of getting it all.

I can only speak for myself but by the time of my procedure I was highly confident that I made the right decision.  I saw multiple docs in multiple disciplines and was comfortable that I made an educated choice.  If you feel that way - even with some jitters - then ok.  If not, then it's certainly your right to reconsider. 

Good luck and best wishes whatever you choose.

Tudpock (Jim)

Posted 6/2/2011 10:04 PM (GMT 0)
HD:

We are all built differently. I am usually very nervous/worried...until I make a decision. So, my advice to you: you've made the decision (I think, reading between the lines).

I also agonized and decided in surgery. I won't rehash the arguments (and I don't want to start one now).

The hard part is done, unless you have not decided on a surgeon (have you?).

Is this the way things are? Sadly, yes. It is the new reality. After surgery you can worry about some immediate needs (next bm, etc.) and most improtantly your pathology report (surgery, in addition to offering a decent salvage opportunity if it fails, also offers a complete pathology report, for better or worse). Then you can worry about future PSA tests. But eventually you will relax and life goes on.

Mel

Posted 6/2/2011 11:16 PM (GMT 0)
John,

I can completely empathize with how you're feeling. As you and I discussed on my thread earlier in the week - you've made a well-informed, logical decision now it's time to get 'r done. We're about the same age with similar PCa numbers. I'm going with an open procedure on 7/12 but would have been very comfortable with the robotic. You'll be fine. Also, you can help talk me off the ledge when I'm a week away from my surgery:)

Good luck and keep us apprised of your progress.
Posted 6/2/2011 11:19 PM (GMT 0)
HD it's one thing to be scared of an upcoming surgical procedure just for what it is. It's something else if you're undecided or doubts are creeping in as surgery as an option. Only you can decide what is the source of your fear.

As one who first was leaning towards radical robotic surgery, then to brachytherapy , and finally discovering a third option in a clinical study and going with it I can only say. Do not allow yourself to be rushed into a panicked decision only weeks after your initial dx. Had I done that I would have opted for surgery. That may have gone well we will never know. But after realizing that was not the time to panic I looked at all options and am now delighted to my outcome. I may well be the most successfully treated guy here.

I'm not saying do what I did other than be sure whatever option you pick you're comfortable with. I've told others here once you pick an option take a week off to reflect on it and gain some more perspective, then once decided go balls out without looking back. Whatever choice you make don't let anyone pressure you into it. It's your life, you have to live with the outcome and there aren't any do overs.
Posted 6/2/2011 11:51 PM (GMT 0)
Hi HD
we are same age I had same fears, my numbers were worse, but docs told me surgery was still best first up treatment option, uro said he would go as wide as possible and only spare nerves that were clear of prostate as >80% involvement in some cores at apex.
Post op pathology showed worse scores with capsular penetration of tumor by .2mm, but surgical margin cleared it by .7mm, as close as it gets. I asked doc was this enough clearance he said in this game it is and he also said if I ever had any doubts about choosing this procedure, (and I did because it cost me over $30K), then forget about them because he doubted he would of got clear margins doing open procedure even though he has done thousands and he also said he didn't think there was a surgeon that could of got clear margins with an open because of the location of the break out. he stressed to me again I was a very lucky man and that in a few months or a different choice of op things would have been vastly different for me. So yep I am very happy with that.
That is me, for you, make sure you are happy with treatment choice based on doctors advice, it is a numbers game but remember those numbers include all candidates, if you could run the same with low Gleason score numbers results would be better, most importantly be confident in your choice of doctor he is going to see your willy and cut your innards.
If your worried the the actual surgery don't it's easy, people are getting paid a lot of money to do it. let them worry, you'll be asleep anyway. smilewinkgrin
Posted 6/3/2011 12:18 AM (GMT 0)
HD, i haven't posted lately but read others every day and decided to reply as your situation appears not a whole lot unlike mine in oct. 2009. i was g6 with cancer on both sides of prostate with a probable pos. margin going into surgery. pre surgery i was t1 and 45 years old. post surgery i was upgraded to t3a and had an initial psa post op of 0.02 followed by 0.05. good news was post op gleason was still g6. i completed 39 treatments of rt and have had "undetectable" each test so far.

i would not change the decisions in my case to have surgery first and if needed radiation. our thinking was even if there is a pos. margin and surgery isn't the cure, g6 is slow and any cancer left behind would hopefully still be in the bed area and would be zapped by radiation. so far so good and i'm due for next psa in aug.

i think we all can relate the fear and anxiety and i although i don't post much i can't tell you how much the people here at hw have helped me.  in 2009 and most of 2010 i did not believe the anxiety would ever ease up for me as some claim, but sure enough over time, this whole journey is becoming just a bump in the road i see in the rear view mirror.  i know each of us have our own thoughts on treatments, i just wanted to share since our situations seem to have things in common.  believe me i know it is easier said than done, but who can add a minute to ones life by worrying. i pray that for you also, this will soon just be a bump in the road of your past.

Posted 6/3/2011 12:56 AM (GMT 0)
HD Rider I just took my bike in for a 6000 mile checkup yesterday, and yes you will ride again, and I will be sitting with the wife of a friend of mine during prostate cancer surgery next Monday. I am post three years now with robotic surgery with a 3+4 biopsy and know the drill. I have been clean (0) since my surgery and have pretty much exiled all the demons this disease brings.   You will be fine.   Every person is different and every surgeon acts differently while accomplishing the common goal of defeating cancer.   You obviously caught the cancer early and now you will be rid of it.   Your life will change but not in the way you have imagined in your sleepless nights.     If you are the type that wants to think about the worst, think about not having a cancer checkup and finding out later that extreme measures are necessary.   I learned a couple of years back that even prostate cancer specialist get prostate cancer.   They go through the same thing we do and have no advantages.   It’s all about attitude no matter the outcome you will persevere.   Bless you , keep your head up and join us in eradicating prostate cancer. Age 61 at diagnosis PSA Jan 2006 2.8, PSA Jan 2007 3.7, PSA Jan 2008 4.4 DRE Normal, Biopsy positive 1 core in 10, Clinical T1C, Pre surgery Gleason 3+4=7 Bone scan Normal, Cat Scan Normal da Vinci robotic Surgery April 30, 2008, Fremont Nebraska Post-surgery Gleason 3+4=7, Pathological P2C Lymph nodes clear, Margins clear Hospitals stay 2-days, Catheter out 10 days 1-pad a day for 3 weeks Back at work 7-days after surgery, desk job Both Nerves spared, Post 38 month PSA-undetectable
Posted 6/3/2011 1:20 AM (GMT 0)
HD,

I agree with Tud above, if you are having true second thoughts about surgery, then by all means, put a delay on it. If your mind is made up to have surgery, that is understoond, and we can all relate to any lingering fears related to it. Like I told my lovely daughter years ago walking her down the aisle at the church where she got married, "if you have even a second's worth of reservation, let's just turn around and call it off." She didn't.

With your stats, you do seem to have the full spectrum of choices before you, some of us didn't have that luxury. So be sure this is what your want. Not what the surgeon wants, or because of his schedule.

We are for you, regardless. It's your body, your cancer, and your choice. None of this is easy, and the fear you feel is expected, very normal, etc.

Once they prep you in pre-op, and give you the first "slow down" drug, you won't know or remember a thing until someone is gently waking you in post-op.

Good luck, but please think it all through at least one more time.

David in SC
Posted 6/3/2011 1:53 AM (GMT 0)
HD,
Don't sweat too much. I had the same feelings but today I am very happy with the decisions I made. And I knew that my chances of a complete cure using ANY primary localized treatment modality was questionable (high PSA and high volume of positive cores). But I feel more firmly today that the choices I made were the best options for me and that they would still be if I had started out today. I was 44 at the time that my surgeon removed my prostate. My decision was based on the fact that I could find absolutely NO long term data on any other options passed ten years except for surgery and hormonal therapies. Like I said I was 44 at the time and living to 54 was not my goal. Surgery had the history ~ al beit morbidities and all. But at least I could find the information I was hoping to. As it turned out my research to find a great physician worked well. My plumbing works fine.

The other parts you are talking about ~ salvage therapies and if surgery fails...Fist let's talk about surgery failing...There are some here that think that any detectable PSA ever at any point after surgery for the rest of your life is a failure of the procedure. That's simply false. Folks can have excellent results still with positive margins and nodes. In my case, I had positive margins, positive seminal vesicles, and positive extra-prostatic extension. But I also have negative PSA tests and THAT's the one that matters. I decided myself to skip the basic salvage therapies and instead take them on with adjuvant approaches. And I can find that data and I am glad to be where I am.

I've been in this forum for over four years. I cannot find a single member here or at UsTOO meetings I run that had any other therapy than hormonal therapy or surgery prior to 1998. I know some exist but it's a hunt to find them. Everyone treated with other modality has been recent (less than 15 years ago). But I can find dozens of men that did get treated more than 15 years ago and they all had one thing in common ~ they were alive ~ most doing very well.

I am not saying that other modalities can't be as effective, I am only saying that I would need more time to tell. I know others won't agree with my choices or decision making process but it was quite logical to me...

Tony
Posted 6/3/2011 2:38 AM (GMT 0)
Well put, Tony. Peace of mind is important in any decision we make about treating prostate cancer. An informed decision is based on facts and logic. I had the luxury of being able to take my time in deciding, but determined as a result of thorough research that surgery was the best option based on its history of success (and technical improvements) and the specifics of my own cancer, age and health status. No outcome is 100% guaranteed, but that's life.
Posted 6/3/2011 2:43 AM (GMT 0)
HD - it's ok to be scared - and you will be fine ( we at HW voted and you will be fine) :-)
- life is full of dreams and nightmares - you have the love and support of your family and friends - and your extended family here at HW to help you with the bad times and help celebrate the goodness in life.

sincere hugs,
BRONSON
Posted 6/3/2011 12:47 PM (GMT 0)
Thanks very much, everyone. The support of the members of this forum have meant a lot to me and I'm glad I found this place. Now I just gotta get through the next week.
Posted 6/3/2011 7:51 PM (GMT 0)
There's something about surgery (or any primary, potentially curative treatment, I imagine) that can calm a guy down quite a bit. My anxiety started high and increased right up until I went under. I woke up sore but much calmer.

Now that I think about it, maybe they're sneaking in some kind of quick lobotomy procedure.

Anyway, I wrote about exactly this feeling on my blog at:

http://scottontheorwigs.com/2011/02/half-full/
Posted 6/4/2011 6:57 AM (GMT 0)
HdRider:

http://www.youtube.com/watch?v=HaVXfHZv50Y

Hang in there PCa brother

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