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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 2.2 ng/ml, his Gleason Score was 3+3=6 and although he does not know his clinical staging, it seems likely he was staged T2a. His choice of treatment was Robotic surgery. Here is his story.

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.

Paul's e-mail address is: pja_51@cox.net