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Barry C lives in California, USA. He was 59 when he was diagnosed in December, 2010. His initial PSA was 1.80 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

I am not only a prostate cancer survivor but also a doctor, though I do not take care of adults, only kids. In Dec 2010 at a routine physical my PMD found what she thought was a lump on my prostate during the rectal exam and sent me to a urologist who made a similar finding. A biopsy was performed shortly thereafter and of the 120mm of tissue sampled just 1mm showed Gleason 3+3 (6). I was ready to have surgery right then and there because my father had died of this disease and I wasn't going to let it kill me too. However, once reason returned, I decided to sign up for active surveillance. Two subsequent biopsies didn't show any cancer at all, so I began to question if that 1mm of tissue had somehow been misread. My PSAs remained stable, and have done so for five years, but in May of 2015 another biopsy showed a lot more (4 cores of 12) low grade cancer.

In any event, I am now two days postop and while yesterday I was pretty sore, I think I am less so today and with the help of Milk of Magnesia I was able to have a bowel movement (slow intestinal motility is nearly universal after this procedure, so I expected it and kept the diet on the light side). Still have a catheter in and I have a followup visit in a week to have it removed and to get the pathology report that is so important in understanding what to expect from this tumor in the future through use of the Sloan Kettering Nomograms (https://www.mskcc.org/nomograms/prostate).

I am writing this because I found this site incredibly helpful in terms of suggestions on how to deal with my cancer. Two specific suggestions that I got that have already paid dividends: use a little neosporin at the tip of your penis to lubricate the Foley catheter (it really helps) and get a tote to carry around the larger bag wherever you go if you are inside your house because if you stay well hydrated (important!) you will produce a lot of urine and emptying the leg bag every hour isn't much fun.

Updates to follow.

UPDATED

December 2015

Brief update: the cath came out today. What a relief! A couple of words of advice: first, make sure you TELL the surgeons BEFORE surgery on which leg you would like the cath anchored (it gets anchored to your inner thigh). This might matter if you have a preference about which side of the bed you sleep on normally. Otherwise they will put it wherever THEY want. Second, when the catheter is removed, it may hurt a bit, briefly. But it hurts a lot more if they do not pull it out from directly in front of you. In my case they pulled it out while the nurse was sitting to my right side.

Got the surgical path report: still Gleason 3+4=7, and thats very good. Gleason upgrades are not good for one's prognosis overall. However, there were a few "focal cells" at the surgical margin. So, using the Sloan Kettering nomogram there is an 82% chance that this will not recur in 10 years and a 99% chance that it won't kill me in 15 years. Of course, these are just percentages. From now on its living one day at a time, enjoying every moment. First post-op PSA test will be in a month.

UPDATED

December 2015

Here is a brief update to my story.

I am now sleeping without pads and really don't need them much during the day either. My leakage is limited to a few drops a day or every other day. This occurs usually if I suddenly sneeze or cough and I am not paying attention. If I do pay attention I can contract my pelvic muscles to avoid leakage. ED has also not been much of an issue as I think I am about 90% back to normal, though on Cialis. I am now three weeks post-op and can't wait to start working out again.

I do have an opinion (and this is just my opinion) about Kegel exercises that I thought I should share. Typically we are asked to do these exercises every day. Besides being a doctor, I am also a seasoned weight lifter. If I am working a muscle in the gym to gain strength and size I do not work that muscle every day. I might work it three or four times a week at the most-it gets tired otherwise. I am not sure why this doesn't pertain to Kegel exercises as well. I have been working those muscles hard, but only four days a week and the results have been very good. This is not medical advice, just my opinion, for what its worth.

Followup PSA is at the end of the month.

UPDATED

February 2016

Hi all...just a quick update. Its Feb 19 now, about three months after surgery, and I am one of the very fortunate individuals never to have had significant side effects from my procedure. There was a little dribbling maybe a half dozen times if I coughed very hard or sneezed over the first month, but now I am completely dry. I never had a wet pad at all. I am able to have full erections, though perhaps they don't last quite as long. It's quite manageable however. My post-op PSA was undetectable; the next one is due next month. I am relieved that this is now most likely behind me, though there is still a 17% chance that my cancer will recur within 10 years. My thanks to YANA and all your stories for providing me with support through this process.

UPDATED

March 2016

Just a quick update. Got my four month pos-top PSA back today and its still undetectable. The Sloan Kettering nomogram says that I have a 97% chance that it will remain that way for two years post-op. I will take those odds any day, given the fact that I have cancer. I mentioned earlier that I have no side effects, but I guess what I meant is that I have no significant side effects. I occasionally leak a few drops if I bend over and pick up something heavy (I lift weight...and occasionally lift my dog), but its really not a problem. Just a wet dot on the underwear, same as any man would get if they didn't compulsively get the last few drops out after urinating before he pulled up his pants. And while I am able to get fully erect, it wasn't lasting quite as long as before surgery, but even that is improving. Again, its not a problem at all. Good luck to all of you on your journey.

UPDATED

September 2016

Just a brief update. I am now ten months out from surgery (RALP) and my PSA is still undetectable. There are no side effects whatsoever now....there was a period when my erections were not quite as strong as before, but that too has passed. I am still getting PSA tests every three months. As scary as the surgery was initially, it turned out, like most things in life, not to be as bad as I imagined. Essentially, I am just moving on with my life now. One added bonus: I can pee like a teenager again. If I can be of any help to anyone going through this please let me know. And thanks again to the administrators of this site.

UPDATED

February 2017

Hello everyone. Just a quick note to update where I am. My surgery was in Nov 2015, so I am about 15 months out now and my PSA is undetectable. According to the Sloan Kettering nomogram, if I plug in my numbers there is an 84% chance of no recurrence of my cancer in 10 years. I think I will die of something else. I have had a very fortunate course and aside from an occasional drip (meaning about every two weeks or so) I have not had any side effects at all from my procedure. Several of you have written to me asking me who my surgeon was, but unfortunately he no longer does robotic surgery because he wanted to spend more time with his young children (good choice!). So I am carrying on, living my life, and hardly ever really think about prostate cancer any more.

Best of luck to everyone!

UPDATED

September 2017

Another brief update. I am now 22 months post-op and my PSA is still undetectable. My doc has stretched out the blood work to every six months now, which is good. There is a little ED, but with drugs and sufficient stimulation its really not an issue. I am not really sure if the ED is due to the surgery as I am now 66 years old and I think most guys my age don't have the erections of a 20 year old. I am happy with the results and am just living my life. There is also an occasion few drops of urine that escape if I bend over to pick something very heavy up and don't pay attention, but its only once a month or so. It's not an issue at all.

Good luck to all of you facing this.

Barry's e-mail address is: barry4158 AT aol.com (replace "AT" with "@")


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