Does anyone else regret having surgery? I do!

Hang in there Chris. There will be better days.

I had surgery without any real ED or continence issues. It was after salvage radiation that continence worsened and ED became a problem, but I have got to say that I have no where near the issues that you are having. I guess that it is easy for me to say that there will be better days, but I sincerely hope there will be for you. Best wishes. BB

Chris I sincerely hope this passes for you and your spirit is refreshed…..

If you have access to spiritual counseling/consoling pursue it. It is not allowed on this and many other forums of this nature. Thats the reality and why , in respect for that rule, most of us are at a lost for words. There are sites out there specific to that help however. It may really help you. What have you got to lose??

Chris I'm sorry things didn't work out for you they did for some of us. Surgery was extremely successful in my case but I do still worry about it coming back.

are there some medical procedures one who is in your situation can have? Are you going to a specialist for rehab.

Chris, I am relatively new here, and female...just want to say I'm sorry for your pain and frustration. My father is less than one month postop, but in my researching things just in case he does not gain continence, some things mentioned are working with a physical therapist, or trying something called a J-clamp which is an external clamp. Or surgery to put in an artificial sphincter.

I hope things will improve for you...don't give up on yourself. There will probably be some women who won't deal well with it, but don't stop holding out hope for that one special lady that will be understanding of your situation. She will love you even more than you can imagine right now.

When my urologist opened my chart to tell me that my third biopsy had come back positive for prostate cancer his assistants had put some of the surgery paperwork in the folder with the pathology report. He looked at the results and set the surgical forms aside saying that sometimes his assistants were a bit over-eager. He then proceeded to tell me that my result showed Gleason 6 (3+3) cancer in one single core with only 5% of that core affected. We talked about Active Surveillance. We talked about the possibility of waiting for HIFU to be approved in the US because a doctor he knew was doing trials on it at Duke and was excited about his results. We talked about rechecking my PSA in a couple of months to see what it was doing and then deciding. He didn't see any reason to rush the decision.

He was a class act. But, in retrospect I would have been better off if he was one of those shoot-from-the-hip surgeons who pushes the process. I am, I think, fairly unusual in that regard. By the time I finally finished with my second opinion on the biopsy samples (still 3-5% of only one core but now Gleason 7 3+4) and my second opinion on surgery (advised to "wait and see") and another biopsy (to help me decide -- negative) and talking to a radiation oncologist and I finally decided on surgery and scheduled it, nine months had passed and my Gleason 9 (4+5) monster was growing out of the apex of my prostate in all directions.

So, in answer to the question "Do I regret having surgery?" the answer is "No, I regret not having it sooner." I hope we caught it before it went systemic but my side effects would have been less if my surgeon had less cancer to dig out of the apex where the surgical clearances are so tight.

Peter,

Sounds like your biopsy report of Gleason 6 was upgraded to a Gleason 9 after the post-surgery pathology report? Sorry to see that.

That is why I've been tending to mention in my more recent posts that statistic about 28% of post-op reports showing the cancer was more aggressive and involved than predicted by the biopsy report. I'm seeing more & more people reporting similar post-op results on both this board and another PC forum I belong to.

It shows how AS can be a roll of the dice if a biopsy shows a cancer to be a Gleason 6. While I would NEVER say a prostate should be removed simply to find out the actual grade and stage, it is ironic that the only way to find out for certain is after surgery happens to be the treatment chosen by the patient.

I sure hope that they someday come up with a test that can tell, without a doubt, the true cancer stats in a prostate before any treatment is chosen. I'd bet that they will have something like that in the near future.

ChrisR,
I'm so very sorry to read about your situation. Have you posted your stats in other threads before? Can you tell us how long ago your surgery was performed, what the pre and post-op Gleason scores were, etc. How many surgeries had your doctor performed in the past?

I am hoping, for your sake, that you are still within a year or two of your surgery. If so, you may still recover your continence and could also still see your urination during sex begin to clear up.

Don't lose all hope. Sometimes it takes a long time to recover and hopefully this eventually will be the case for you.

Take care,
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.

Chris,

Get it off your chest. Venting is GFMPH, we can take it. When you are on the raw end of the deal, its easy to see how and why you feel that way, and yes, you are young.

Even though my surgery failed quickly, I have no regrets. I feel the way you too about salvage radiation, which I wish to God I never did it, it ruined my physical life, for life. It has left me a cripple in constant pain, it left me peeing out of a hole in my bag and in need of a catheter bag for the rest of my life, and it left me with literally thousands of bladder spasms for which there is no fix, and the best part, the very best part, is that the radiation didn't remotely slow my cancer down, so it was all for nothing.

But I refuse to let it make me angry, I refuse to let it make me give up, I accept my new reality, and still try to live for tomorrow, and hope for better days.

I hope for better days for you too, my friend. Perhaps they are just around the corner.

David

Venting is a good idea, (And doing it at HW is perhaps especially helpful for those without partners)

about this time last year I was getting very fed up with all the leaking , dribbling and urgency and decided to start using pads again. (I need about 1 per day to deal with the volume of pee invoved, but often use two so I can change the smelly thing half way through the day - I also had an issue with jock itch for a few weeks)
With a pad in I can carry on doing all sorts of stuff without the need to dash to the bathroom.
And yes I leak during sex, even when thinking about sex, even when watching my wife dress/undress. However, I have noticed that even if my wife and I do exactly the same things I don't always leak, so we keep trying, and keep cleaning up and I have a rubber sheet on my side of the bed. And there are defintely positions where leaking is worse, but others where there is no leaking (standing and me on top are bad, sitting and me on my right side are good)

But I can understand that if you are single and looking to date that the leaking is a major issue. The world almost needs some kind of singles bars/clubs where people with medically difficult situations could meet (I'm happily married, but I have noticed that my relationship with female friends who have had cancer are on a different level to other friendships, and were I single - who knows)

And as for regretting surgery. I have no regrets. The biopsy said I was a Gleason 6, but I wasn't. They would never have found out that I was Gleason 3+4 and had SVI had I not had surgery. On the basis of the G6 I could have opted for a few years of AS, and then left it too late.
And now, thanks to having SRT as well, my PSA has been undetectable for two and a half years, and not having cancer is such a big plus it helps me (and my wife) accept that I have a wet penis several times each day.

Wishing you all the best
Alf

Chris I am sorry your situation has put you in the position to regret your decision. At this point, two months post op the only regret I have is not having surgery sooner. Sure I have ED problems and incontinence. Even with all the work I am putting into it along with medication my junk is a joke and at times I can pee while talking to you (not my choice mind you). Sure my quality of life is diminished somewhat but when my Uro told me my first post op PSA was zero you couldn't have found a happier person on this earth. That what I keep reminding myself everyday. The cancer is gone, and hopefully will stay that way! I hope and pray you can find a way to be positive about what has happened to you.

Thanks for all the responses and support everyone.  To answer the few of you who asked, I had surgery in 2008.  So I am 5 years out.  It is he!! to have this stinging feeling  2 or 3 times every minute all day long because urine is leaking to the tip of my genital constantly.  My surgery was done at in Baltimore at Johns Hopkins.  This side effect has always been there, but has recently become much more intense. 

So, yea instead of wining about it I guess I am going to have to pursue other treatments.  The urgency feeling 2 or 3 times a minute is what is killing me the most.

BTW, I was OC G6 pre and post surgery.   I know a lot of people have it worse then me and I don't mean to belittle their situation.  But I am sick of this constant urgency feeling.  

thanks for listening everyone......