Hello:

It has been awhile since I have been on this forum. But after 24 years with the J Pouch, very successful, I have another problem, Prostate Cancer. Surgery is recommended - a full prostatectomy. I am requesting anyone that may have gone through the same experience or knows of someone for some council. I am currently looking at the open prostatectomy vs the laproscopic version primarily because of the potential difficulty from the heavy scarring and adhesions that may be there from the J pouch surgery. Also, since the surgery requires extreme delicate cutting near the rectum I really want excellent tactile control from the surgeon. Can anyone offer a response regarding:
1. experience with this surgery, open or laproscopic
2. what were the surgeons comments after surgery - routine or complicated ?
3. How did you do post op regarding the normal complications ? how long did take for your recovery - full or partial ?
4. Did you retain your potency ?
5. Did you experience any problems with the J pouch that was not there previously ?
6. Urinary control ? how long to reGain ?
7. where did you have the surgery done ? hospital, city, state
8. Are you pleased with the results ?

any other information will be greatly appreciated

best regards

mike

Mike, sorry to hear about this new development, but I hope that it results in a positive outcome for you. I have not had the surgery (don't have the equipment), but thought you may like this link with information. While impotence is very common following a total prostatectomy, most men recover function over many months following surgery as the nerves recover from the trauma. The same is true for incontinence. However, if those nerves are involved with the cancer, they will have to be removed and there will not be a recovery. http://www.webmd.com/prostate-cancer/Radical-prostatectomy

Can I presume you will be having the retropubic approach as opposed to the perineal approach? The retropubic (low abdominal) approach offers the best chance for nerve sparing, plus lymph nodes can be dissected.

http://www.upmccancercenters.com/cancer/prostate/radprostretropubic.html

I could find no liturature providing information specific to having a prostatectomy after j-pouch, but I would presume that due to potential adhesions present, it is possible that pouch damage could occur during the prostate dissection. This could mean removal of the pouch or simply just performing a pouch repair at the time of the surgery. If I were you, I would ask your urologist to have a colorectal surgeon scrub in or at least be on standby in the hospital in case his skills were needed. However, your urologist may be able to explain to you how he would handle a situation like that. I am sure that it is fairly common for urologists to perform minor repairs to intestines during pelvic surgeries.

Jan

Jan:

Thanks for the website info. Yes, it will be a retropubic frontal attack surgery. The scars will all line up. A zipper would help.

The top Urological Institute is Johns Hopkins - I am planning on getting an opinion from them on my situation, I imagine they may have seen this combination previously. My original work was done by the Mayo in Rochester, Minn. Pioneers in the J Pouch 24 years ago. Although I am not geographically near either institute I am also planning to discuss this situation with the Mayo Urological group. All info is important at this time. I am just 60 this year and am planning on a long healthy "leak free" retirement with my wife after a few more years in the working world. So anyone that knows of a similar situation please advise.

thanks

mike

Mike: I am in the same situation. I had j pouch surgery in 1994 and have just been diagnosed with prostate cancer. I have been told that because of the pouch most of the alternative treatments such as radiation are unavailable as they would destroy the pouch. I have also been told that there is a high risk to surgery to remove the prostate. I am 73 years old and am contemplating doing nothing because the guality of life after losing both my prostate and my pouch is not appealing.

Have you any information or advice. I noted the reference to Hopkins and Mayo's. Did you get any information from them.

Have you had the procedure? Any assistance will be appreciated.

Mike, I am sorry to hear about your new DX. You are one of the very few pouches older than mine, 20 yrs for me.

Jack,
My Dad was DX with prostate cancer after an aortal eneurism(sp?)when he was 78.Granted he had no j pouch. My sister and myself along with my Dad saw the oncologist. My Dad was very vain and had a head full of hair. We all decided to do nothing about the prostate cancer because he would not want to lose his hair or vomit from chemo or radiation. That to us is not quality of life. He went 8 years with no problems and then finally at age 85 agreed to try the lupron injections.He was miserable, he had breast growth which made him self conscious and he never went in our pool again.
He only lived less than a year after treatment started. We feel he was better off without it and just live as long as he could happy. He ended up with a urinary tract infection that required full time catheter which was awful for him and it ended up advancing the cancer everytime he pulled it outI understand you not wanting to do anything.I dso believe my Dad lived longer and better without treatment.
My hope is that neither of you suffer.
Holly

Mike and Jack
I am sorry to hear that prostate cancer has invaded your body. I am a woman, so I don't have a prostate, but my husband had one until last April. He was diagnoised Jan. of 2007. Had surgery April 2007 and is cancer free now. He is 50 years old and we researhed every alternative to surgery. I found the best doctor for robotic prostatectomy. Dr.Ash Tewari at NY Presbyterian Cornell, is the most experienced doctor in NYC and the country. Dr. Tewari is an internationally acclaimed expert on Robotic Prostatectomy and other minimally invasive robotic surgeries. Mike,you are close enough to NYC to get a second opinion from Dr.Tewari. Jack, it would be worth the trip to NYC for a second opinion from Dr.Tewari. Dr.Milsom is also at the same hospital and he is regaurded as one of the best J-pouch surgeons. My husband has no complications from the surgery, but he does not have a J-pouch.

To answer the qusetions:
1. experience with this surgery, open or laproscopic?
Robotic is the most precise
2. what were the surgeons comments after surgery - routine or complicated ?
routine, but he doesn't have a pouch
3. How did you do post op regarding the normal complications ? how long did take for your recovery - full or partial ?
there are no normal complications, he was walking the day after surgery, spent 3 days in hospital,he was home for one month
4. Did you retain your potency ?
he can have a dry orgasm without being erect fully, has been fully erect a few times and is improving, he takes a generic Viagra
5. Did you experience any problems with the J pouch that was not there previously ?
no pouch
6. Urinary control ? how long to reGain ?
full control after 1 week with catheter, light leakage with lifting and bending over, sometimes, wears a Kotex pad when away from home, most days it stays dry, did Kegel exercises before and after surgery
7. where did you have the surgery done ? hospital, city, state
NY Presbyterian Weill Cornell, http://www.cornellurology.com/uro/cornell/index.shtml
8. Are you pleased with the results ?
Yes, almost one year anniversary and still cancer free!

My father lives in Houston and was diagnoised with Prostate Cancer when he was in his late 60's. He had radiation at MD Anderson Hospital. He now has Carcinoid syndrome and is on HRT for the rest of his life. His PSA levels are less than .1 but creep up if he goes off the HRT. He is retired and works part time in a hardware store to keep active.

Good Luck,
Barbara
P.S. I just noticed the dates Mike posted is almost a year ago. I wish I had seen this sooner. Jack do your research so you can make a complete informed decision.

This message has been edited. Last edited by: BarbieG,

Barbie, Jan will surely correct me if I have been misinformed, women do have a prostate but don't get prostate cancer and men do get breast cancer(uncle and brother-in-law)both died from it.

This message has been edited. Last edited by: "FLGF",

Women cannot get prostate cancer, as they don't have a prostate gland. Jan will correct me if I am wrong.

To understand why women would have prostate glands, it helps to go back to our embryonic beginnings, when everything was taking shape. Popular wisdom says we all start life as female embryos, but scientists say we really begin as blended male-female beings.

"You actually have the plumbing for both genders in the early embryos," says University of Pennsylvania developmental biologist Patricia Labosky. At eight weeks, males and females both have a proto penis and a proto prostate.

After that point, depending on whether your chromosomes say you're male or female, some parts grow and develop and others degenerate. A few develop in different ways in both sexes: In girls, what would become the penis instead grows into its sister organ, the clitoris.

And what would become the male prostate becomes the female prostate. Just as the male prostate produces the fluid that carries sperm to their various destinations, the female version sometimes creates an ejaculation of fluid if rubbed the right way — through the G spot.

Men and women really aren't such different creatures. We really are just flip sides of the same coin.

If you have a prostate, what is your PSA level? Mine is about 1.2

My father was diagnosed with prostate cancer at the age of 52. He had the surgery followed by a course of radiation treatment. His recovery did take about 6-8 weeks, but that included the radiation treatments. He has been cancer-free for 15 years this June

He has had some issues with urinary leakage. However, according to my Mom, he never did the Kegel exercises the dr told him to do. There have been a few things the dr has tried to improve the condition, but as of yet, my father hasn't found anything that fixes the problem. THere is a surgery he could have but he is reluctant to do it, prefering to deal wtih the issue rather than risk another surgery.

The PSA test is important. It is believed the volocity, how fast the level raises, that is most important. My husband's level was 1.2 two years ago and then 1 year ago it was 3.7. He had prostate cancer then. After the biopsy, it climbed to 7.9. Now, the latest test is <0.1 almost one year after surgery.
Everyone should get a PSA by 50 years old, that is how old my husband is now. If cancer runs in the family, you should have a PSA sooner.

Bodoni, how old are you?What was the previous PSA level?

Women do not have a prostate gland, but women do have some tissue that have cells similar to that in the prostate gland, and arise from the same embryonic cells. These are the periurethral glands or Skene's glands, that are near the urethral opening and also along the length of the urethra and produce mucous. These glands are also present in men. They do not produce significant PSA. However, in some men, they can be a source of an elevated PSA post-prostatectomy. http://www.ncbi.nlm.nih.gov/pubmed/12378515

So, while the periurethral glands arise from the same embryonic cells as the prostate, they are not the same as a prostate. They are similar.

Jan

Barbie,
I am 65 and my latest PSA level was 1.2

I have symptoms of an enlarged prostate, as a lot of men do. Frequent, small urinations, etc. Some men take a drug called FLOMAX that relaxes the base of the bladder and makes urination easier.

Thanks Jan. I knew you would be able to clarify this. I don't like to misinform intentionally.
The article I read was confusing.