Choosing a Treatment Procedure

mikebur

I had prostate cancer in 2003 - psa 4.7 - gleason score 6 prior to surgery and gleason score 7 after surgery - positive margins. After doing my own research and speaking to doctors - I chose radical prostatectomy (open - not robotic) - as robotic surgery was very new in my area and my doctor did not perform them at the time. However, I did not originally want surgery but wanted external beam radiation - but I was recommended to have surgery based on my age - 54 and life expectancy of 10 years, etc. I had the surgery in 2003. Since the surgery the complication are impotence and incontinence (I still have both). However, no one spoke about penile shrinkage - dysorgasmia (painful ejaculation) and bilateral inguinal surgeries - as additional complications. I am writing this to alert anyone thinking of open radical prostatectomy to have the information of the last three complication as a reference. As someone who did not originally want surgery - to find out after surgery - that I would need an additional two surgeries - I would have definitely selected radiation (and I know radiation has it's own complications). However, I did not know of the additional complications until I had them (robotic surgery probably would not cause the additional surgeries because they only need four small holes to operate - instead of a nine inch incision with open surgery). I have since found all three additional complications listed in "studies" but not in any other literature that would notify a patient "before" they had the surgery.

Hope this information helps someone else. God bless. Mike

mikebur

Choosing a Treatment Procedure
Sorry for a typo - the last line should read "that I had "NOT" found any information on the three additional complications in any other literature given to patients (but only in the studies that I found in research after surgery).

God bless. Mike

lion1

mikebur said:

Choosing a Treatment Procedure
Sorry for a typo - the last line should read "that I had "NOT" found any information on the three additional complications in any other literature given to patients (but only in the studies that I found in research after surgery).

God bless. Mike

Choosing treatment/Being Informed
mikebur,

It's good to share your experience and the "pitfalls" if I may of many doctors. I had a great Doctor---highly recommended for LRP-- AND THE SURGERY WENT GREAT. However, he did not elaborate on incontinence at all---and as far as impotence---he was confident that by doing nerve-sparing surgery, potency would return and in my case it did. But, I was left incontinent for the last three years and all indications looks like I'll have an Advance Sling in me by October. My mistake is that of many men, all I heard him say at that time was----I'll be still able to have sex---Looking back I didn't even process the incontinence part. I thought that it would not be a problem.

One definitely has to get as much information as possible and something one should key in on is listening to folks who used a certain doctor and they are now potent and continent. For instance, If I was to do it all over again, I would probably choose Dr Tewari, everyone on this sight who had him perform their surgery, apparently are totally continent and have no problems with sex. Now maybe not all his patients were that fortunate, but all the patients on this site were.


Lion1

mikebur

lion1 said:

Choosing treatment/Being Informed
mikebur,

It's good to share your experience and the "pitfalls" if I may of many doctors. I had a great Doctor---highly recommended for LRP-- AND THE SURGERY WENT GREAT. However, he did not elaborate on incontinence at all---and as far as impotence---he was confident that by doing nerve-sparing surgery, potency would return and in my case it did. But, I was left incontinent for the last three years and all indications looks like I'll have an Advance Sling in me by October. My mistake is that of many men, all I heard him say at that time was----I'll be still able to have sex---Looking back I didn't even process the incontinence part. I thought that it would not be a problem.

One definitely has to get as much information as possible and something one should key in on is listening to folks who used a certain doctor and they are now potent and continent. For instance, If I was to do it all over again, I would probably choose Dr Tewari, everyone on this sight who had him perform their surgery, apparently are totally continent and have no problems with sex. Now maybe not all his patients were that fortunate, but all the patients on this site were.


Lion1

Choosing Treatment/Being Informed
Hi Lion1!!! You're absolutely right - being informed and choosing the right doctor is paramount!!! That's why I posted. This site is great for sharing information and if what we go through can help someone else - that's the right thing to do.

I started to question why I was having these complications and not having heard of them before (penile shrinkage - dysorgasmia and inguinal hernia). When I researched the literature I did not find any of them mentioned at all. However, I am a social worker (MSW) and know how to research. I researched studies on these topics and found several on each. However, several of the studies stated that doctors know about these complications but do not tell the patients. So I posed the same question/information to the American Cancer Society and sent them the studies I found - and they responded that they would take this up at their next meeting and look to add this information to their website and information. So we can take a negative and make it a positive - especially for those who are just being notified that they have prostate cancer and are looking for what treatment/doctor to use.

Thanks for your input and God bless.

Mike

shubbysr

mikebur said:

Choosing Treatment/Being Informed
Hi Lion1!!! You're absolutely right - being informed and choosing the right doctor is paramount!!! That's why I posted. This site is great for sharing information and if what we go through can help someone else - that's the right thing to do.

I started to question why I was having these complications and not having heard of them before (penile shrinkage - dysorgasmia and inguinal hernia). When I researched the literature I did not find any of them mentioned at all. However, I am a social worker (MSW) and know how to research. I researched studies on these topics and found several on each. However, several of the studies stated that doctors know about these complications but do not tell the patients. So I posed the same question/information to the American Cancer Society and sent them the studies I found - and they responded that they would take this up at their next meeting and look to add this information to their website and information. So we can take a negative and make it a positive - especially for those who are just being notified that they have prostate cancer and are looking for what treatment/doctor to use.

Thanks for your input and God bless.

Mike

Being informed and TRUST
Wow! I am a 55 year old, and 2 months since surgery. My research tok me to John Hopkins in Baltimore. Dr.Jarow answwered my questions with statistics. He averages @150 robotic surgeries per year. I questioned his success rate of 85%. This means successful surgery. they successfully removed the prostate gland and surrounding tissue without "damaging" the two nerve bundles. Incontinence and impotency are side effects but, at what level? In all my research to date there is no time frame for the return of potency or continence. But, we are assured that there is treatment for these. I sometimes think anything is better than the alternative or is it?
Well, I trusted Dr.Jarow and to date I have very little control of my bladder and a weak "orgasm". Dr. Jarow comments that I am doing fine and making good progress.

Jim (shubbysr)