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Posted 6/18/2006 6:16 PM (GMT -8)

Michael,

I am 7 days out from surgery.  My emotions are running rampant and there are times I don't want to do it at all.  It's funny as you don't feel sick.  When I ripped my meniscus in my knee....I knew something was wrong and could feel it evey time I walked.  This illness....just doesn't seem real sometimes.

I find this forum to be quite helpful and am gracious for all of the information and support received.  My doctor is young, but has over 280 of these performed in the past 2 years.  He said that he was going to do the surgery as if it was on himself....wanting everything to work.  One unique thing he said he is going to do is not cauterize the nerves when he pulls them off of the prostate (stops bleeding).  He said 'your young enough that you can bleed a little and this should help greatly with regaining erections'.  I hope he's right.

The roller coaster....I feel daily.  On one hand, I'm glad that it will come out and that I should be cancer free.  On the other, the side effects are hard to swallow....guess that it's about being a man.

Why are you not scheduled til August?  What area are you going to have it done (state)?  I'll keep posting after surgery.....


Aaron

Posted 6/19/2006 4:16 PM (GMT -8)

Aaron,

For what it's worth, I was diagnosed with a "nodule" at age 40. A biopsy showed no cancer (that doesn't mean it wasn't there).  My PSA was 4+ something or other back then. I'm 49 now. During a routine colonoscopy a few months ago the Dr felt the same nodule and recomended seeing the urologist. This time it was cancerous but my PSA was less than 2. I had a retropubic radical prostatectomy on 5/20. The Dr  said there was a very small area where it had penetrated the capsule. Nothing was found in the lymph nodes , etc. So it's possible I've had cancer for at least 9 years without knowing it.

 My days of having kids were over long ago so it wasn't an issue for me.

Even at your age you don't have to decide immediately. It's not like a brain aneurism waiting to explode.

 Although I wouldn't put it off. 

Good luck.

Dave

Posted 6/20/2006 8:39 PM (GMT -8)

Aaron,

I've been thinking about you as the day approaches.  I too go through the similar thoughts.  Is it the right decision, is it really necessary,  should I further delay?  My urologist agreed I did not need to make a quick decision, but he did not want me to wait more than 3 or 4 months.  I decided to enjoy the summer with the kids (lots of plans playing in water) and will have the procedure done in August.  I was surprised to hear your PSA climb so much.  Does the biopsy procedure itself elevate PSA levels?  Does anyone know?

It is wierd still to think I have cancer.  I was talking to a friend who recently went through chemo and radiation for breast cancer.  I told her how my cancer was nothing compared to her.  She just laughed as she said the same about herself since they caught it early compared to others.  She said cancer is cancer.  In most cases if caught soon enough it is treatable regardless where it started.  I have a great support system of family and friends, but I get embarassed when I receive a card or small gift to let me know they are thinking of me.  I really try to down play it considering my Dad is battling kidney cancer.  A battle he will most likely lose in the end so I think my situation pales in comparison.  I guess I would be an idiot if I did not take action to treat it so as to be cured.  Men still die from prostate cancer every year but fortunately much fewer these days.  Why?  Because they catch it earlier and can treat it!  Plain and simple.

Not really simple since we can have life altering side effects, but these seem to have gotten better as well.  Like you that is my biggest concern.  One very positive thing is that my wife and I have been snapped out of the routine of things and really giving each other much more affectionate attention.  The sex has never been better which is bitter sweet situation.  We've made up for lost time but know it will end for a while too soon.  I do not care if it takes 7 or 8 months to completely heal as long as it happens!

I have a busy summer between work and play so I do not think about it too much.  I know I will be much more aware when it is only days away like for you.  I will be thinking of you and please let me know how it goes when you feel up to it.  I am in Colorado by the way and supposedly with one of the most qualified surgeon in the state for the robotics procedure.  He has not done over 200 procedures like your Urologist, but has performed around 100 procedures.  He says it truly takes close to 50 procedures to perfect this procedure.  Take care Aaron and keep us informed.  Keep you spirits up and best of luck with everything!

Michael

Posted 6/28/2006 1:03 PM (GMT -8)
Here it is Wednesday! I got home yesterday afternoon after 1 night in the hospital.  The cath is a pain  mad   but using neosporin around the tip helps alot.  I wasn't real sure where I was Monday evening and became more lucid on Tuesday morning.  Today...it's gas, gas, gas.  Eating soft foods (yogurt, jello, soft scrambled eggs, raisins, and LOTS of water/juices.  Dr. said it came out ok, won't know anything else til the pathology report comes in. 

Any one considering this surgery-DaVinci-it's the only way to go if you are under 50 yrs of age.  Make sure you have a qualified Dr. and Hospital.  I was at Florida Hospital in Orlando and they were great/very caring.  Dr. Patel and Dr. Thill did the surgery.

Thanks to you all for your advice, support, and suggestions!

I will be a survivor!  tongue

Aaron

Posted 6/28/2006 2:38 PM (GMT -8)
Aaron - hang in there - I had davinci the week before in FTL, Florida @ Cleveland Clinic, so I can relate. I never got gas pains though. I pray your pathology report will be a good one - it was music to my ears to hear that there was no penetration beyond the capsule! Be tolerant of the catheter, for the healing time is important. Don't worry about the removal like I did - it took 2 seconds and was painless and provided great relief. This is a journey and you are in phase one. I am amazed how better I am in just 2 weeks!

Be blessed,

Dennis
Posted 6/28/2006 3:08 PM (GMT -8)

Hi Aaron,

Glad to hear your home already, and don't worry the gas will dissipate in a couple of days or less. Good luck on your pathology report; I'm sure it will be okay.

Speedy recovery to you,

Glen

 

Posted 6/30/2006 4:00 PM (GMT -8)

So here it is Friday, 4 days after surgery.  The doctor called and said he had bittersweet news.  To bring you up  to date: biopsy in Feb found to cores positive, assigned a 3+3 gleason with a 3.6 psa.  Then in May, my psa jumped to 10.0.  Decision to have robotic surgery.

Dr. informs me today that the local lab could find no evidence of cancer at all.  So I asked, 'did I go through this for nothing?'  His reply was that the two best labs in the US had diagnosed the biopsy and he was sending the prostate there.  He said that a 3.6 psa is still very high for a now 42 year old and he would have made the same decision. 

Now I have to wait until a psa is done to see if it's at zero.  If not and still high, then it's somewhere else in the body......according to him.

So I ask, was it really the right decision, or could I have waited...........who knows.  I'm not much of a gambling man, so I suppose I did.  I will keep updating as to what happens and thank all of you for your support and advice.....

Aaron  confused

Posted 6/30/2006 4:57 PM (GMT -8)
Aaron,
If the alternative to not finding any cancer in the prostate is finding it somewhere in your body then the best news possibe at this point is they find no cancer and just leave it at that. You would not be the first this has happened to but it sure is a rare occurence. Be thinking about you kiddo.
Swim
Posted 6/30/2006 7:26 PM (GMT -8)
Hi Aaron.

Iam so sorry to read what happened to you. I can feel with you so deeply. I am DWT's wife , he was diagnosed with PC T2a the end of May. We are still struggeling to take the right steps in which treatment to take. Some days ago it was HIFu for sure now it's back to Robotic. It's cases like yours that scare us more than anything else. As per my husbands biopsy there is cancer, but is it really so and how advanced? What if the same happens to him as to you. It's not like taking out your appendix - if its taken out unnecessarely,  so what you really don't need it.

I just hope that you recover very fast and soon, physically and  mentally. I believe mental recovery is the hardest to do. Swimom is a great source of knowledge and advise.

Hope to hear some good news of your recovery in the future

SL

Posted 7/1/2006 8:41 AM (GMT -8)
Hi SL,
Sorry it's taken me so long to get bac to say hey to you. I see DW is still
pondering his options. That's okay. He's at a stage where he can do just that.
Ya know, I've been reading about HIFU, Proton and seed/radiation methods a lot lately. HIFU sounds more risky in the ED department and in the urinary department than either seeds or Proton both. Gosh, most guys who have Proton especially, don't have too much of a change in their daily lifestyle at all. Not the one's I have heard from. Is Proton available near you? I forgot where you're at. It means treatments daily for a while but it doesn't have to mess up work schedules. DW is both lucky and not lucky...he has so many options to choose from. Only early stage has these kinds of decisions to make. The price for early detection, choices!

Seeds don't change a man's function much, not with a little viagra and not at first. One brachytherapy gentleman yesterday was talking about being out on his motor cycle 3 days after seed implant. Even surgery doesn't require such a long time with a cath in place as HIFU.

As young as DW is, I have a hard time thinking a good surgeon wouldn't have him back functioning in no time at all. Almost every young guy I've had communication with has not suffered incontinence but short tem or none at all. Most every young amn has minimal loss of function over a shorter period of time. For quality of life it sure sounds like seed/radiation, surgery or Proton have the best outcomes.

Healing has to take place so if his job requires him to be on his feet for 12 hours, a week just isn't long enough. A postal worker freind of mine had robotic done and was back working in post office, on his feet in 10 days. Paul was back on duty but it was desk duty in the same amount of time..with no pads. A week is still not enough but 10 days is not impossible. Not my idea of a thrill but sometimes necessity is such a beast. Get DW on a good vitiman B-50, C. Vitiman A and E and selenium. The E should stop a week prior to any of the procedures he decides to try. The B is vital to providing energy and they are all teriffic healing remedies. Paul added a B-12 for a a couple of months after surgery and had great energy. After a few months post-procedure just drop down to a decent men's multi and life is good! Not perfect but what life is? LS...e-amil me anytime @ plp40@wowway.com SWIM

Now I know DW is worried about his job and has to be back in a week but gosh...has he any other options at all?
Posted 7/5/2006 5:17 PM (GMT -8)

GREAT NEWS ON THE CATHETER FRONT!!  I had the catheter removed today at 3:30pm and am still on the first pad at 9:30pm!  All I can say is kegal, kegal, and more kegal before going in.  Of course, we'll have to see how it goes.  I do leak a little when I stand, get in the car, cough, etc. 

Removal of the catheter was easy.  yeah After one basic x-ray, they put dye in through the cath to check for leakage.  Two more x-rays.  Then the Dr. said everything looked great and the cath was coming out. Small pinch when the balloon/bubble was deflated, a big breath in, and then pulled the cath when I exhaled.

Dr. gave me viagra and info on the pump.  Thinks they will be covered as the meds/pump are listed for rehab from surgery.  I'll have to wait and see.  '

Still under major restrictions on lifting/pulling/straining, etc. and told me to take the next 2 weeks easy....tv, books, relax.

Hang in there all!!  :-)
Aaron

Posted 7/6/2006 9:20 AM (GMT -8)
Hi Aaron,

Glad to hear everything is going well. Sounds like you'll be one of the lucky guys that's going to be dry in just days. Good for you! Like the doc says just enjoy the rest for the next 2 weeks, and NO LIFTING.

Have a speedy recovery,

Glen
Posted 7/12/2006 7:15 PM (GMT -8)

Hey Arb,

That is great news about how well things went when taking the catheter out!  I hope I will have a similar experience.  My surgery is coming up August 8th.  I am doing the Kegel thing in hopes this will help.  Is there a recommended way to do the Kegels?  Would like to know.

Did you ever hear back from the lab about your results after the initial negative report?  I am glad so far so good with your recovery.

Best regards,

Michael

Posted 7/14/2006 7:35 PM (GMT -8)

Michael,

Things are going fairly well.  I did notice blood in my urine yesterday (pink pee!) and the Dr. said I was over doing it.  I explained to him that I haven't lifted anything...and he said that any excessive bending, sitting, standing, twisting will aggravate it.  He said 'sit on your butt, walk each day for 30 minutes, and don't lift anything.  Ok, guess I'll follow.  Here's some info on the surgery:

-Hospital: expect to stay overnight. Once you are up in the chair and they cover catheter care, they will kick you home the next day (I was home by 2pm). Typical hospital stuff....4 hour vital checks, blood samples, etc

-Catheter needs list: vinegar (to clean), get extra tape from the hospital, get 2 leg bags (my first one leaked like a lawn sprinkler), bucket (for large bag as you sleep), someone to empty the bag in the night, neosporin to put on the tip of the penis, cotton boxers 1-2 times larger than what you wear, and any kind of elastic shorts (regular shorts, pants hurt the stomach), lots of pillows for the bed.  Keep the tube clean where it enters the penis.  Have someone help you with a shower (use a hand held one if possible...it'll be hard to keep the water off of the stitches if not) Just relax with the cath....don't try to force peeing...

-Misc items: stool softner (not a laxative)--Dr. may prescribe, but the nurse told me to use ducolax stool softner 2x per day, jello, juices, soup,as you will be on a liquid diet until your first movement, than soft foods (eggs, jello, yogurt, pudding, etc), a 'support ring' to sit on (Walgreens has a foam one for $20--the blow up ones leak) that at 3 weeks out I still use, bandaids, you will get a pain medication prescription...just remember that they tend to constipate you, and I'm 6'5" and found a toilet seat raise thing helped immensley!  They are at Walgreens and sit on the toilet bowl 'raising the seat about 5 inches'

I had the dog go on vacation until the catheter came out...think jumping dog pulling tube out...ouch!  Lots of books, movies, and rest.  Expect to take afternoon naps.  I was walking 30 minutes by my 3rd day home...but wore myself out.  I have a hard time sitting and not doing anuthing.....you must remind yourself that you had a major operation and need to heal.

If you have any other questions...just ask!  I also am using pure vitamin e oil on the scars now.

Good luck and my prayers are with you!

Aaron

Posted 7/14/2006 7:38 PM (GMT -8)

arb said...
Hey all! I'm 41 and diagnosed with a 3+3 gleason and a 3.8 psa. Had the biopsy and 2 of the 12 pulls showed abnormalities. Ok, so it's cancer. Been researching everying and will most likely do the robotic surgery. Here are my questions: After the biopsy, I've had a slight dribble, before the biopsy dry as a bone. Anyone ever find this to happen to them? Second, I'm engaged to be married next summer....of course we would like to have a child. Anyone bank/freeze before? Results?


The oncologist said that it was up to me, but as slow growing as it is, I could wait 6 months (monthly psa's of course) get married and try to have a child. Anyone ever put it off this long from initial diagnosis. Going to go and see a new urologist for a 2nd opinion today.


Any suggestions/help much appreciated!!

Aaron

I used these guys

http://www.cryobank.com/
Posted 8/30/2006 8:11 PM (GMT -8)

Hi All,

Just an update....had DaVinci on 6/26.  My psa just before the surgery had jumped to 10.1  After surgery, the Dr. said they initially didn't find anything so they sent it to John Hopkins (wouldn't let me keep it tongue ).  Hopkins found more...but it was in their hands now. 

My recovery has been bumpy, but now I'm down to a few dribbles normally towards the end of the day.  ED has been an on/off issue.  Sometimes it works and sometimes it doesn't.  Tried Viagra, but the side effects put me in bed sick.  Cialis is a little better.  Also have tried the pump...and I'll leave it at that.  I believe that with time I should heal to near 100%.

The GREAT news is my PSA results came today and it was less than .1  YIPEEEEE!!

DaVinci is definitely the way to go!!!


Aaron

Posted 6/21/2007 5:36 PM (GMT -8)
Previous post from August 30th.... 2006     This thread is very important so I'm attaching current updated information so it pops to the top!!!    June 20, 2007   Partial Quote from his new thread: Overnight Incontinence I just had a psa 2 weeks ago and it was undetectable!   Aaron DaVinci Surgery on 6/26/06 PSA 3.8 to 10.2 just before surgery Gleason 3+3   June 21, 2007             Quote from reply post to CaliforniaCA Welcome to the best site for information and support!!  The questions, thoughts, fears, and anger are shared by many.  Don't hesitate to post and ask. I was 42 when I was diagnosed.  It was devastating.......but I asked my girlfriend to marry me 2 weeks later...and she said yes!  The trip has been long and tiring, but on the 26th it will be 1 year since my surgery and my psa is undetectable still!  I went through the mind jumble--have it done---wait--have it done--wait--have it done--wait and had the DaVinci done due to my age. (Don't forget to freeze some if you still want to have more children later). I can honestly say that I'm glad I did it!  Imagine the fear of knowing that it was there (even the smallest bit) and may be spreading without you knowing it.  Have faith, relax, and give yourself time to think...... Aaron     Aaron ~ I'm glad you shared this information with us.  We are thrilled to hear about your PSA results and just have to send a special WooHoo....  We were really new to the forum when you had your surgery.    Our thoughts and prayers are with you as you head into Year #2... In Friendship ~ Lee & Buddy
Posted 6/21/2007 5:38 PM (GMT -8)
    Yea !   ~   Aaron & Loved Ones,   PSA’s…    !!! ~~~ >>>   Woo ~ Hoo   <<< ~~~ !!!   undetectable   One year   ~   cancer free An anniversary really worth celebrating!!!     Cause   for    celebration!!!!!   Definitely!!!      What a wonderful day it is ~ each and every-day ….             Enjoy it to the fullest.     Yippeeeee!!!!!! From   Lee & Buddy   *      *      *      *      *      * The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met…. It is very important to “all ”of us!   This is a way of positive feedback… A way of showing others Hope… and a way of Sharing.    J   Caring is Sharing ~   Thank You for Sharing   J     Personal Threads started by:   Aaron *Arb Overnight Incontinence Insurance after diagnosis Catheter/Medical needs prior to Da Vinci surgery 41 with Diagnosis   «   bluebird ~   Moderator for Prostate Cancer Forum
Posted 6/22/2007 9:59 AM (GMT -8)

Hi Aaron,

I'm glad your doing well.  What did the pathlogy report from Johns Hopkins indicate?  Did they also review your biopsy slides?

Aaron

Posted 6/22/2007 12:46 PM (GMT -8)
Great news arb!

I'm 43 and getting ready to go through the DiVinci at Duke. My surgery is July 31st so your experience story is helping greatly. I am trying to work out as much as possible to get ready for the surgery and I'm going kegals everytime I pee and some in between. Thanks for the list of things and I am not looking forward to the catheter for the same reason but I have 4 dogs. I keep visualizing the dogs playing keep away with the bag - ouch. How many weeks were you out of work? I'm in construction sales - no heavy lifting but I'm either driving meeting builders or sitting in front of a computer so I' m curious how long I might be looking at.
Posted 6/22/2007 3:23 PM (GMT -8)
I was allowed back on light duty in 10 days. Waited 2 weeks to please the boss but I could easily have gone back in a week. Good Luck.

Paul
Posted 6/22/2007 5:33 PM (GMT -8)
    ARB,  I was 43 at diagnosos and open RRP.  My only advice would be to find a Bio-Feedback therapist that can help you isolate the pelvic floor muscles.  I found out about it too late.  I think I pretty much waisted 7 months doing the Kegeals wrong.

   

    Good Luck with your Journey!

    KW

Posted 6/23/2007 6:53 PM (GMT -8)
Hey All!

Don't give up! I firmly believe that preparing yourself, doing the kegals prior to surgery, and keeping a positive/open mind will get you through this! If you are new to this, I suggest reading the posts and going to the Livestrong website---they have a 3-ring manual (cost only $9.00 for shipping). The manual is a life organizer and time saver. It includes subsections for doctor visits, test results, meds, your 'journal', finances, and more. It helped me keep everything organized and is still helping with my recovery.

I was back to work after 9 weeks. Probably could have gone back sooner, but they had to cut the mesh from two hernias and repair so I basically had the prostate removed and a double-hernia done at the same time. Just remember to give yourself time.....nothing else matters but your family and your health!

Aaron
Posted 6/23/2007 6:55 PM (GMT -8)
John Hopkins reported that the cancer was in the right quadrant of the prostate......
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