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John Galt lives in Oregon, US. He was 50 when he was diagnosed on April 27, 2009. His initial PSA was 2.5 ng/ml, his Gleason Score was 7 and he was staged T2b. He is undecided as to his choice of treatment. Here is his story - pretty brief!

As I was recently diagnosed, I don't have a story just yet. I'm working through trying to figure out what the best course of action may be.

 

UPDATED

September 2009

 

 

I don't think I ever wrote a proper story, so I'll try for more depth here.

In 2000 when I was 41, during a visit to my regular doctor, he detected what he thought was a nodule on my prostate. I don't remember my exact PSA at the time, but it was not at an elevated level; certainly less than 2.0.

As a result of finding the nodule, he advised me to see a urologist for further consultation. The urologist monitored me for a while and decided he felt a needle biopsy was warranted. I think he based his decision on rising trend of PSA, what he felt and my family history.

Many others have written about their experiences with the biopsy so I won't comment on it here. It's not fun, but not that bad. When the results came back, they were negative -- no cancer. But, some of the samples showed (I forget the term) suspicious cells. The urologist decided monitoring at 6 month intervals was the proper follow-up procedure.

This monitoring (PSA and DRE) went on for some time without any incident, and then, the last PSA in November, 2008 showed a jump in level; I think it went from 1.4 to 2.5 in approximately 9 months.

Once again, the urologist did a biopsy. This time, the results were clear. The pathology showed cancer in 8 of the 12 cores and the overall Gleason score was 3+4. Some of the cores were 70% cancerous. Cancer was in both lobes.

Naturally, I was stunned, speechless, numb and incredibly scared. I'd already started doing my homework as I "knew" someday I would get prostate cancer. My granddad died from it in the 1970s, my dad has a slow growing form of it (he's in his 80s) and now it was my turn.

So, on my 50th birthday, I received prostate cancer as a present. I thought of all the worst-case scenarios; not seeing my kids finish growing up, them getting married and so on. I have been going to the gym 3-5 times a week for over 10 years, I'm 6'1" 185lbs and in pretty decent shape overall; not that any of that helped keep prostate cancer at bay.

Since I was quite freaked out about the whole thing, the doctor thought it might be useful to have a bone and cat scan. At first I didn't want to do it, but I changed my mind. I won't go into the details, but neither the bone or cat scan are traumatic. You just get an IV and drink a lot of liquid.

The bone scan came back negative and the CAT scan didn't show anything unusual either. The intent of these tests was to determine if surgery was an option for me. If the cancer had spread to the bones, then their would have been no point in surgery.

I spent quite a lot of time on the internet looking for information and ran across this site. It turned out to be very helpful; particularly the first-hand accounts of what everyone went through for different levels of the disease and the corresponding treatment. I read many, many of the stories here. Sometimes they helped me feel better; other times they were scary.

Based on my research, I thought robotic surgery was probably the best bet for me. My urologist referred me to another surgeon, who as it turned out, specializes in robotic prostatectomy. His name is Dr. Bruce Lowe in Portland, OR and he is a fantastic surgeon and doctor.

In my initial meeting he went through the reasoning as to why surgery was the best option. I'm a statistics and science oriented person and his presentation of the data made a compelling argument. Going in to the treatment decision process, I wanted to also meet with a radiation oncologist, but changed my mind. The nomograms showed a clear advantage to going the surgical route vs. other choices. Whether or not, this is the final answer on the topic, I don't know, but given my clinical data, the nomograms showed an improvement of something like a 5% chance likelihood of being cancer free at 5 years for surgery over radiation.

Ultimately, I decided to go the robotic surgical route. This decision was based on the outcome predictions and my doctor's level of experience. When I met with him, he said he had done 600-700 robotic surgeries, and upwards of 2,400 traditional open surgeries. He is a recognized expert in the Pacific Northwest. I felt extremely fortunate to have been referred to him. I think I also choose surgery because I did want the time bomb removed from my body is at all possible. Surgery seemed like the best option for a cure.

A week before my surgery, the doctor wanted to do a cystoscopy; a visual inspection of the urethra, prostate and bladder. Having a tube up your penis is not my idea of fun, but it wasn't that bad. I even got to see the inside of my bladder. The doc said he does this because 10-15% of patients with prostate cancer also have bladder cancer. He spent maybe 5-10 minutes looking around the inside of my bladder. After this exam I felt like I had a urinary tract infection for several days. Burning and a little itchy.

As surgery day approached (June 2009), I actually became more calm. Initially, I was worried about various aspects of the procedure: dieing from the anesthesia, dieing from an infection, massive pain when waking up, all of the usual suspects. The day before surgery was "prep" day. I wonderful day of a liquid diet, massive amounts of antibiotics, showering with weird-smelling soap and the bowel cleansing process.

On surgery day, I was numb, scared and felt as though I was going to be executed. I was resigned to my fate. When I got to the hospital and checked in, I was taken to the surgery prep room. It is at this point you seriously enter the process. IVs are inserted, clothing exchanged for a hospital gown and you resign yourself to the system.

I don't want to give the impression the people involved are cold and heartless; just doing their jobs. That was not the case at all. Virtually every person I interacted with, nurses particularly displayed a great deal of kindness and empathy.

The anesthesiologist came by and was quite jovial and reassuring. He said my drive on the way to the hospital was far more dangerous than the anesthesia I would receive and to not worry; he's done a million of 'em. He asked me a few questions (don't remember anymore what they were) and then they put something in the IV. I started to become quite relaxed and things get hazy at this point.

I remember being wheeled on the gurney into the operating room, seeing the robot over on the side of the room draped in blue surgical paper. I vaguely remember people talking to me and me answering, but the specifics are just not in the memory banks. After that, nothing until I woke up 6+ hours later in my hospital room.

I woke up with no pain and felt reasonably OK, considering. Weak, drugged, a sore stomach, but OK. The nursing staff was great. I had a room all to myself and it seemed all of the rooms in that wing were private rooms. My surgery was scheduled for 9:30am, but I think it actually started around 11am. Several hours of surgery followed by a couple of hours in the recovery room.

That evening, one of the nurses asked me if I wanted to get up and walk around. She was kinda cute, so I said "sure". I think she took a shine to me and we walked many laps around the floor. I'm sure I looked very attractive with my pee bag, hospital gown and bleeding incisions. Oh baby!

The first time getting out of bed was quite painful, but I did it, stood up with a wobble and proceeded to walk around the floor with the sexy nurse. Things could be worse I thought.

The nurses kept my pain manageable with first morphine in the IV and then percocets. Percocet did work very well.

I stayed in the hospital 3 nights, gradually walking more and more often, took a shower on the day after surgery, and ate very lightly for the first few days.

On eating I can't emphasize this enough -- if you have the robotic surgery you may get VERY bloated with gas. I looked like I was pregnant at one point. Since you will have 5 stitches in your stomach, well, you can imagine that doesn't feel very good. In retrospect, I would say the bloating was the worst part of the entire experience. It was extremely unpleasant. I walked and walked and walked to no avail.

Eating anything other than broth or jello in the first fews days is not recommended.

Eventually, I did pass a little gas in the hospital and they let me go home. As I understand it, you can't leave until they know your bowels are coming back on line.

In preparation for my surgery, I bought some workout pants with button-up legs -- very good idea.

On the catheter -- yes it's a pain, literally, but again, manageable. At first a steady stream of bloody crust will work its way out of your urethra. This crust will irritate the urethra and when the day comes when they take it out, you will be very happy.

Back at home, my condition improved day by day. Within even the first day, I was able to climb stairs, albeit one at a time. The next day I was outside walking a few hundred yards and within 3-4 days I was walking maybe a 1/2 mile at a go.

At first I thought loose fitting boxers would be best when used with the catheter. I found briefs to be a better choice. If your penis is allowed too much movement, the catheter will start to irritate the opening of the urethra and you won't want that.

After a week of being stuck at home -- can't drive with a catheter or not supposed to -- the catheter removal and pathology report day came.

The removal of the catheter was painless, but felt weird. Like many of these things, it's really no big deal. I'd already received the pathology news from the doctor when I was in the hospital and the news was about as good as it could be: cancer confined to the capsule, lymph nodes negative, seminal vesicles negative, surgical margins negative and the Gleason was downgraded from 3+4 to 3+3. The doctor's PA went over all of the post-surgery recovery items I didn't to do: taking 25mg of Viagra everyday, use a penis pump, Kegel exercises and so on.

Before going to the catheter removal appointment, I bought some adult diapers as I expected to leak for some time. On the day of the appointment, I fully expected to start peeing all over the floor when I stood up. After the catheter came out....nothing. Not a drop. I thought great! I have a blockage and they'll need to put that damn catheter back in.

But no, I turned out to be one of the lucky ones - or my doctor is very skilled - and I really didn't leak much. I wore a diaper on the way home just in case and a little urine came out. Within a day or two I was using just a pad but that turned out to be unnecessary. I was essentially dry from the day of catheter removal.

Occasionally, without warning, even now three months later, a dribble may occur. But that is very infrequent; not even once every other week.

On the sexual side of things, I was able to have a mild erection somewhere around the 10-14 day post-surgery mark. Erections are definitely harder to come by than before, but with Viagra, I am able to have sex, take care of my partner and have a good time myself. Dry orgasms are strange, but that's life. Sometimes 50mg of Viagra works and other times 100mg are required. Since I'm still early in the recovery process, I can't complain. My insurance paid for most of the cost of a penis pump, but I haven't had a need for it.

Next week (September 2009), I go in for my first follow-up appointment. Based on my pathology report, I'm optimistic the PSA is at an undetectable level. Fingers-crossed..

Later: I went to the doc and got my first post-op PSA result back. PSA was 0.05 and the doc will follow-up again in 4 months. If it stays below 0.1, no further action will be taken as I understand it.

 

UPDATED

March 2011

 

 

No new news to report other than my PSA continues to remain in the undetectable range -- 0.02 -- and my doc has moved me to annual monitoring. Next appointment is in June of 2011.

Sexual function has continued to improve and with Viagra, is quite good; no complaints. No issues with bladder control either.

John's e-mail address is: jgalt59@gmail.com