Was my Surgery necessary or should I have been told to do watchful survilance?

[TucsonCowboy]

I am questioning everything at this point. I had surgery in June of 2013 and the ED problems continue. I am wondering if my surgery was justified. At a recent doctor's visit I got copies of the actual complete biospy test results. I was told before surgery, my Gleason number was 7 (4 & 3). The actual numbers were: 1 = 7 (4 & 3), 1 = 7 (4 &3) 1 = 6 (3 & 3), 1 = 6 (3 &3) psa of 2.4 The biospy after surgery was 7 (3 & 4). I have not had sex in six yrs. and am really questioning if I was rushed into something. I clearly was not told that the ED would be so bad!!

[YostConner]

Tempting as it is, there’s not much value in second guessing past treatment decisions. Is it possible to focus on what will make life better now?

[Tall_Allen]

I agree with Yost. This is pointless. BTW- with Gleason 4+3, there is no active surveillance program in the world that would have accepted you. Consider a penile implant.

[TucsonCowboy in reply to Tall_Allen]

Thank you for this information!! My concern was that the biospy from surgery was much different than the origiaal before surgery. The biospy after surgery was 7 (3 &$). Guess I am just really unsettled that it has been over six yrs. and I have had no sex.

[TucsonCowboy in reply to TucsonCowboy]

The biospy after surgery was 7 (3 &4).

[jimreilly]

Nothing that's happened to this point can be redone. If you want to have sex you need to think about: what kind of sex can I have/can't I have now. Can I broaden my scope of what I will and won't do? If what I can do is not acceptable (e.d. "I'd rather have none at all, forever") are there ways to change that--either by rethinking what's acceptable or altering what's physically possible? Are there options besides penile implants? My surgeon said to me the people who have penile implants have to be "really motivated"--are you that motivated? I'm presuming you've already tried Viagra, Cialis (or their generic versions), pumps, Trimix, that loop thing that's recently appeared, but you don't say....? I went, I think for five years, without sex after my surgery.....for a combination of reasons that also involved no longer having a partner. While I don't find my present situation ideal, it's better than no sex at all...... My answers to the questions above may not be yours (e.g. I will not do a penile implant); only you (perhaps with some professional help such as the person in your surgeon's office who specializes in such things, or someone else?) can think these things out and explore all the medical, and perhaps emotional, options. But dwelling on past surgical actions and what might have been their alternatives will not change a thing. Good luck--it can happen!

[Handdrummer777]

I would say try the new devices -- Giddy, Xialla and the Loop. All three stimulate blood flow without constriction, thereby great assisting erections to happen.

In your case, if you find that these don't work, your only option to have a sex life is, as Tall_Allen recommends, the implant. And thank God we have that as a "golden last resort" -- permanent ED fix, and erections for as long as you want.

Perhaps the fact that once an implant is installed, a man loses the ability to have a natural erection is a stumbling block psychologically for some guys. That's the thought I get when reading "you have to be really motivated."

You want those erections. You want to feel like a whole man.

For severe ED, combining devices could be effective:. Either Giddy and Loop, or Giddy and Xialla, will work together.

Best of luck on your journey forward!

[Handdrummer777]

The above comment is a reply to your post.

[tvankirk]

The doctors cook those Gleason numbers to fit the treatment that they want to perform and what financially benefits them. After three years I'm in the same boat as you. I finally realized that my surgeon really had no interest in my recovering from ED and I finally fired his ass. Their interest is only in removing the cancer and getting a check from my insurance company. Our sexual functionality is of no concern to them. I have no interest in getting an implant as well. It's just another money making venture for them....

[TucsonCowboy in reply to tvankirk]

I really appreciate your comments. They express clearly what I truly felt what happened. After very carefully reviewing the information provide to me I made my decision. I trusted the surgeon involved. The "cook those Gleason numbers" says it all. Your comments parallel my thoughts that the surgeon knew information concerning the possible serious ED effects but did not provide them to me. I am in agreement that his only objective was to remove the cancer and get a check. In my opinion, what is occurring for many men is not ethical. I also have no desire to get an implant. Again, thanks for your comments!!

[willp4real in reply to tvankirk]

I could not agree with you more! It’s all about a check mark under their belt to say they have performed X number of surgeries to increase the perception of experience. Of course the monetary deposit and send us on our way, quality of life destroyed and all!

[TucsonCowboy in reply to willp4real]

Thank you for you reply!! It shows me that I am not alone and other men have also been mislead.

[Handdrummer777 in reply to tvankirk]

You have no interest in an implant? An invisible device that gives you great erections with no time limit?

Why not??

[TucsonCowboy in reply to Handdrummer777]

From what I have read, I would prefer to not go in that direction. In my opinion, the risks and possible side effects do not justify it.

[dadzone43]

Why are you looking backward?

[TucsonCowboy]

My quality of life has been changed in a manner which was a direct result of decision I made which was based on misleading information. Had I been presented all the correct test results, I would have waited and been retested several months later.

[Cubbiesfan]

The urologist doesn’t determine the Gleason score, the pathologist does. It’s normal that different pathologists would arrive at different scores. Since they have no role in treatment selection, they have no financial incentives to promote one over another.

My urologist advised me to seek second opinions. This is good advice before undergoing any procedure.

[TucsonCowboy]

Thank you for this information.

[mkljajic]

TucsonCowboy,

Same thing happened to me. By biopsy, diagnosed with G7 (4+3) with 55% of 4. On pressure of my wife and urologist whom she knew for a long time since he was resident at a teaching hospital where she works as RN in Urology clinic, I went with surgery 3 years ago. I was 51 year old, in excellent health, not on any medication, non smoker, non drinker and in very good shape. My surgery was nerve sparing with limphnodes removal.

After surgery, G7 but with 3+4 where I had 40% of G4.

I never recovered a bit of sexual function despite aggressive penile rehab. Surgery greatly damaged my relationship with my wife.

I couldn’t say goodbye to my sex life, so I made decision to get penile implant. As of now, 14 months post implant, I am happy I did it. I don’t have a sex that often as I used to have it before RP (presently 1/week) but sex is great again when I have it. What is even better then having sex, is feeling that I have penis again.

Penile implant, made big impact on improving my QoL.

MK

[TucsonCowboy in reply to mkljajic]

Thank you for your comments. It is interesting to hear that others had the same experience I had .

[Hidden]

I wish that I could give you a definite answer, but have to ask , what is your pda now? And are you on any meds?

[TucsonCowboy]

My PSA now is <0.01 and I take med for urinary & ED daily.

[Ram17]

Please don't go there. You can't change the past. You can only change the future.

Have you tried any of the other therapies. Some guys get great results with the pills. Some like the pump. I like bi-mix shots. I find them easy to handle and they work well for me.

Try something new. But don't dwell on the earlier decision. It will just take you to a place you should not go. Just let it go.