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Paul A lives in Rhode Island, USA. He was 55 when he was diagnosed in March, 2007. His initial PSA was 2.20 ng/ml, his Gleason Score was 6, and he was staged T2a. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

I was 55 years old when I was diagnosed with prostate cancer in 2007. I had my annual physical in November, 2006 and my PSA was about 2.0 (up from 1.6 the year before). The DRE showed no problem but I did have a slightly low blood count. A few weeks later I started having stomach pains and returned to the doctor. The pain combined with the low blood count suggested an intestinal bleed so I was scheduled for upper and lower GI endoscopies. The upper GI showed a hiatal hernia that was causing the pain. This would resolve itself in a few months. The colonoscopy was unremarkable but the GI doctor performed another DRE while I was sedated. He said that my prostate was asymmetric and I should see my urologist.

I met with my urologist in March, 2007. He performed another digital exam and found a spot that needed study. He scheduled an ultrasound and biopsy. During the ultrasound, he said that my prostate was small for someone my age (about 17 cc). The biopsy started OK but got progressively more painful with each sample. The results of the prostate biopsy showed cancer in both lobes with a Gleason score of 3+3. Only a few of the samples were positive and the percentage of tissue involved was about 1%. He scheduled a CAT scan and a bone scan to see if the cancer had spread. He also scheduled an appointment with a radiation oncologist to get a second opinion about treatment.

The scans did not detect anything outside of the prostate. The radiation oncologist suggested that radiation was not the best choice for me because I was relatively young and the cancer was confined to the prostate. He said that surgery was the "gold standard" for treatment in cases like mine.

I went back to my urologist and he recommended laparoscopic surgery using the new Da Vinci robot. However, he was not trained on the robot yet. His partner would perform the surgery with him assisting. He assured me that the procedure was better than either open surgery or conventional laparoscopic surgery. There was better 3-D vision, better control of the tools, better nerve sparing and almost no blood loss. He was able to schedule me for the following week due to a cancellation. I had to rush to have the pre-op tests performed in time for the surgery. Little did I know that he had performed less than 50 of these procedures. More about this later.

The surgery went well and I was walking the following morning. The Foley and the drain were unpleasant but I would put up with anything to beat the cancer. I was able to leave the hospital that evening. The next two weeks were difficult since I live alone. I got through it with daily phone calls to my elderly mother and emails to an internet friend who was about to undergo prostate surgery himself in a few months.

Twelve days after surgery, the doctor removed the Foley catheter and showed me the pathology report. Gleason score was 3+3, clear margins, no cancer in the lymph nodes that were removed; all good signs. The staging was pT2c. He also gave me some Viagra to increase blood flow to promote healing and salvage erectile function. I found that I had a lot of perineal pain after taking the Viagra, especially after getting a slight erection. There was also burning in my penis similar to an infection. A CAT scan showed some fluid that was causing the pain. This would get better in time. The doctor also prescribed phenazopyridine for the burning. I stopped the Viagra.

May, 2007 brought the first PSA test since the surgery. The level was about 2.0. This was too high so we scheduled a repeat.

June, 2007. The second PSA was 2.2. The doctor said it should be zero by now. He asked other doctors if they had any thoughts on this. None did. My PSA went up and down a little over the next couple of months. The doctor scheduled a Prostascint scan to see where the PSA was coming from. The results showed no PSA anywhere. This is unexplainable since we now know that there is plenty of PSA in my system.

I had another annual physical in November, 2007 and my PSA was up to 2.44; higher than pre-surgery. I was referred to a hematology oncologist who scheduled another bone scan and a trans-rectal MRI. I had the MRI in December, 2007 but I didn't see my doctor for the results until January, 2008 due to inguinal hernia surgery. The MRI showed that there was still 15 cc of prostate tissue remaining in me. I was floored. The oncologist called it a "surgical mishap". I spent the next couple of weeks going between my surgeon and two oncologists to try to figure out what happened. I wanted the have another surgery to remove the remaining tissue but everyone said that would not be possible because scar tissue had formed around the nerves. Surgery would only damage them.

Another ultrasound and biopsy were scheduled for February, 2008. This time I insisted on sedation before the procedure. I strongly recommend a Percocet and a Valium before the biopsy. It made it much less painful. While he was in there, he also implanted three gold markers that would be used during the likely radiation treatments. The second biopsy was positive with a Gleason score of 3+3.

I went back to the radiation oncologist for a re-evaluation. He started with 2 months of hormone treatments (Lupron and Casodex) to shrink the cancer, 2 months of radiation and hormones, then 2 more months of hormones. The hormone treatments cause hot flashes and fatigue as well as a complete loss of sexual desire.

I started the radiation treatments in April, 2008. It is still too soon to feel the side effects but I'm hoping for the best. If I had this to do all over again, I would have opted for open surgery with an experienced surgeon rather than the latest procedure performed by a less experienced one.

UPDATED

June 2008

I just finished 8 weeks of image guided, intensity modulated, external beam radiation. This daily procedure wears you down. In addition to the ADT side effects (no sexual desire, fatigue, dry rubbery skin, weight gain, sun sensitivity and hot flashes), I also got more fatigue, frequent urination, daily diarrhoea and a burning rectum. After a bowel movement, there is a feeling that there is still more there even though you've finished.

The ADT does slow facial hair growth; I get a very close shave every morning. I've cut out all unnecessary exertion (and some that is necessary) to minimize the effects of fatigue. I've had to stop jogging altogether. I'm only able to jog one block and walk two. I'll have to be satisfied with just walking for now. I was able to continue working a full week throughout the treatment but I was left with no energy evenings and weekends.

A bland, low residue diet helps with the rectal problems. Fiber and spicy food irritate the rectum which can be quite painful. Recently I made the mistake of eating a spicy slice of pizza. The next day it felt like someone had shoved a hot poker up there. When things get bad, I switch to the BRAT diet: bananas, rice, applesauce and tea.

A lot of discussion centers on the medical aspect of treatment. I found that the mental aspect needs attention too. I have been very depressed since I found out that last year's surgery wasn't successful. I had weekly sessions with a psychologist to combat this depression. Don't underestimate the toll on your mind. It is just as important to maintain your mental health as it is to treat your body.

This morning, the day after the last treatment, I found some blood in my stool for the first time.

UPDATED

July 2008

It's been five weeks since I finished the radiation treatments. I still have another month of Lupron/Casodex to go. Loose stools continue to be a problem as is the ever-present fatigue. I've been able to get a little sun. I know the vitamin D will help out the bones but Lupron makes you sensitive to sunlight.

I'm trying to maintain some kind of exercise program (I jog) but it's tough going. I'm in a hurry to loose the 15 pounds I gained on Lupron.

I had my PSA checked yesterday and it came back <0.01, down from 2.4 before the radiation. I don't know how much meaning that has right now since I'm still on ADT. I called my oncologist yesterday because I had some hip pain and one of my fingertips was numb. I'm was afraid that there may be bone mets or damage to my hip from the radiation. On the other hand, it may just be a pinched nerve. He scheduled another bone scan later this week to rule out the worst.

UPDATED

August 2008

The bone scan showed nothing, but spinal X-rays showed some degeneration in the lumbar region. Luckily, no bone mets but at least now I know the source of the occasional back pain. I had an EMG and a nerve conduction test to see what was causing the numb fingertips but that test also showed nothing. I guess that was a temporary nerve pinch.

I took my final Casodex last week. My doctor says I can expect the effects of the ADT to be gone in 3 months. Before the summer disappeared, I decided to take a short vacation. A few days in Provincetown (for those who know about P-Town) really brightened my spirits. Even though I'm still tired, I managed to get some sun, go to a few clubs and eat anything I wanted. Making new friends and seeing old ones helped my mental state as well.

UPDATED

October 2008

I've made much progress in the past two months. A lot (but not all) of my energy has returned. I can jog my usual two miles without stopping too often. I've even been able to lose much of the fat that I gained during treatment. I'm still getting hot flashes and that's a pain in the butt.

Even though I'm feeling very well, I started to have mood swings. I was getting short tempered with people. This was the opposite of the calm that I've felt for the past few months. Then I started having crying spells. It happened suddenly when I thought about firemen. This reminded me of something my mother had told me about. When I was two months old, I suffocated in my crib. My mother called the fire department (there were no EMTs back in the early 50s) and a fireman resuscitated me. Thinking about that made me cry. I couldn't even talk about it without sobbing. I was also starting to feel angry at the doctor that botched my prostate surgery last year. I called my oncologist to report this, thinking that my hormones had started to return.

I eventually saw several nurses, clinical social workers, MDs and a psychiatrist. My testosterone is still at castrate level but my thyroid hormones are a little high. They decided that I wasn't a danger to myself so they didn't keep me at the hospital. The psychiatrist said that I was grieving a loss. I was also probably seeing the parallel between being saved as an infant and being saved from cancer.

I'm feeling better now but this goes to show how important the emotional aspect of recovery is.

UPDATED

December 2008

My progress continues. I've finally stopped having hot flashes (yeah!) and my energy level is better but not back to normal yet. I've been jogging a lot and working out but my weight still needs improvement. I think I missed the bullet on radiation side effects. I hope it's not too early to say that. My latest PSA was 0.09 (up from 0.01) but I think that is only because I used a different lab. I switched to the last of the big three (Cialis) but still no erections, but I do have orgasms. However, no headaches like Viagra and Levitra. And it's supposed to last 36 hours. My mood is back under control even though my testosterone is starting to return as evidenced by my facial hair growing again.

I'm getting conflicting opinions about what is left down there after the "surgical mishap" and the radiation. One radiation oncologist says that the remaining prostate tissue is still alive and will continue to make some PSA. My urologist says that all of the prostate tissue was killed by the radiation. What's a guy to think when the experts disagree? Will a continued low PSA (1 to 2) be normal for me?

Finally, something a little off topic. I hated the weight gain caused by the ADT. Even though I have been exercising a lot, I still can't get back to my old weight. Some of the fat deposits are in places that can't really be helped by exercise (like the love handles and under the chin). I thought about it, did my research and I've decide to have liposuction and a face lift. I go into the hospital in a few days for the procedure. I expect to be recovering for a couple of weeks at home. The final result won't be apparent for a few months. I'll keep you posted.

UPDATED

March 2009

My latest PSA test shows a drop to 0.03 from 0.09. I was concerned that it might start creeping up based on the previous two tests. This is great news. Since there is still some prostate tissue remaining, this may be the lowest it gets. I have been feeling quite well. I have most of my energy back and I've resumed working out and jogging. My ED problems persist, though. I've tried all of the Viagra-like medications with almost no effect. Lately I've been taking Cialis on the weekends hoping that there may be some positive effect even though I can't get an erection. I have had a few partial erections in the middle of the night days after the Cialis should have worn off. My urologist has suggested taking 10 mg three days in a row to see if there is any improvement. He also prescribed The Pump (battery operated no less). I'll let you know how that works out.

In my last update I mentioned that I was scheduled for some cosmetic surgery. I had liposuction for my belly, love handles and my double chin. I also had a facelift to take up the slack. While the initial recovery was difficult, I am glad I had it done. I look and feel at least ten years younger. While my photo at the top of this story was taken before the surgery, my skills as an amateur photographer masked my sagging jowls. That's pretty much how I look now. What you can't see is the 2-1/2 inches I lost off my waist. As an unexpected benefit, the surgeon fixed the scar inside my bellybutton that was left over from the Da Vinci.

While the picture at the top of my profile was taken before the facelift, it still represents my current appearance. The photo was composed and lighted to hide my sagging chin and jowls.

For what it's worth, I spoke with a big name malpractice attorney about the failed surgery. His firm was not interested in pursuing the matter.

Later: I've been trying the penile pump with limited success. The instructions say that if you haven't had an erection in over a year, you may have to practice for awhile to get any results. After finally getting the tube to seal around the base of my penis (not an easy task) I'm not getting great results yet. I'll keep trying in hopes that I can get some blood back into the old boy. Oh, the battery operated pump isn't all it's cracked up to be. They also supply a manual one. I get a much better vacuum pumping manually.

UPDATED

May 2009

Just a quick update.

I reported my February PSA as 0.03. That was incorrect. It was actually 0.31. It's awfully hard getting numbers out of my urologist. He mumbles the results. I just saw one of my oncologists and I asked him for my May results and it has gone up again to 0.45. He's not too concerned because he expects a PSA bump during the year following radiation. He does want to follow it closely now as it should level off and start to go down again soon.

Erections are still elusive. I tried Viagra and Levitra again with the same dismal results. The vacuum pump still does nothing. I've about given up hope on that front.

I've been having problems with fatigue again. That and a slightly low blood count gave my GI doc cause to do another double endoscopy. No problems other than a small hiatal hernia, again.

UPDATED

September 2009

I just got my latest PSA and it's up to 0.54 from 0.45 in three months. My urologist is still hoping that it is just the post-radiation bump but it seems to be lasting longer than expected.

I'm home recovering from another hernia surgery. Life is full of side trips. I wish I could get back on the main road for awhile.

UPDATED

December 2009

My latest PSA test was 0.54, the same as the previous one. It seems that the post radiation bump has finally leveled off (fingers crossed). My doctor says it will never go back to zero because I still have some tissue left after the DaVinci. This is good news but I'm having a little urinary problem. It is taking longer to completely urinate again. I even woke one night wet. I was recovering from major oral surgery at the time so my doctor isn't too worried, just keep up the Kegels.

On the ED front, still no luck. The pills have failed as has the vacuum pump. I've just started to see a new ED group at the hospital. I'm not likely to inject a needle into myself but there is another treatment. I was given samples of Triple P urethral gel to try. This is a custom mix made by a local pharmacy that contains one or all of alprostadil, papaverine and phentolamine. It is forced into the urethra using a syringe that does not have a needle. So far the lower doses have not worked. The doctor says there are several combination available to try so I'll keep an open mind.

UPDATED

February 2010

I've been working with a group at the local hospital to treat erectile dysfunction. I don't want to scare anyone from using these drugs but I feel everyone has a right to know what can happen.

I started on the tri-mix gel in December and I've had mixed results. The various dosages didn't do much until I tried the max dose. I got a reasonable erection once but I was sore afterward. The next time I tried that dose, I was in so much pain that I couldn't even touch it. Urinating felt like I was passing razor blades. It took all afternoon for the pain to go away. I decided to stop that treatment.

The doctor scheduled me for a Doppler blood-flow ultrasound. He injected a low dose of prostaglandin directly into the side of my penis. He claimed this would feel like a bee sting. No, it was more like a hot ice pick. There was some response so they were able to image my penile arteries. They found open vessels and a decent but not great flow rate.

I left with a sore erection and it didn't go down when I got home. I returned to the hospital an hour later and they began a series of injections to contract the blood vessels. After two hours and three injections, my penis was still hard and it was also very bruised. Just as they were getting a surgical team ready, it started to go down.

Needless to say, I'm not going to try the injections either. As a matter of fact, I'm giving up trying to treat the ED altogether. I don't want to risk being in that much pain again.

On the bright side, my PSA is still stable at 0.58, three times in a row.

UPDATED

March 2011

It has been over a year since I have made an update.

My bad experience with ED treatments and a rising PSA (as high as 0.76) have made me try to put these problems out of my thoughts. I've been depressed so I went back to the therapist for six months. While that was helpful, other issues including a very stressful winter here in New England, have made me wonder why I continue. I'm sure many of us have thought of just giving up at one time or another.

My most recent PSA test showed the first decrease since recovering from ADT. It's back down to 0.58 and my doctor is hopeful it will continue to decrease.

UPDATED

April 2012

During the past year my PSA has hovered between 0.55 and 0.75. It seems what I do in the days before the test can increase the value. I get the lowest result if I take it easy for a few days before the blood draw. My long term situation has not changed much. I tried yet another ED medication (Staxyn) and got the worst headache ever. It's not worth it if you can't enjoy it.

UPDATED

May 2013

It has been six years since my surgery and five since the radiation treatments. My PSA has slowly dropped and is now at 0.38. The only lasting side effect is still erectile disfunction. No treatment has had much effect on the problem. I've accepted that and have moved on.

UPDATED

June 2014

Another year has passed and my situation is essentially unchanged. My PSA has dropped to a new low of 0.26. The only side effects from the surgery and radiation continue to be erectile dysfunction and occasional dribbling at the conclusion of urination.

Paul's e-mail address is: pja_51 AT cox.net (replace "AT" with "@")

NOTE: Paul has not updated his story for more than 15 months, so you may not receive any response from him.


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