by Diane Johnson

The purpose of this monthly column is to introduce you to people who are living and struggling with prostate cancer.  The hope is that you can learn not only about treatments and procedures, but also find a little extra strength and inspiration to help you in your own battle. 

This month I would like to introduce you to James Spadafora, who was diagnosed last year at the age of 48.  He will take you through the whole process from the diagnosis to the after-effects of surgery.  Jim also speaks candidly about the emotional impact of this frightening journey on himself and his family. 
Here is Jim's story: 

Jim:  I am 49 years old, divorced, and work in New York City.  I have a new relationship with a wonderful woman named Jill.  My 20 year old daughter, Lindsay, is in her third year at the University of Wisconsin.   The rest of my immediate family includes my parents, my younger sister, and an 11 year old niece.

The Diagnosis

I went to see my GP for a physical because it had been about 5 years since my last one.  He suggested a PSA test because I was close to 50 years old.  I guess he figured he wouldn't be seeing me for another 5 years.  He called me about 7 days later to tell me that my PSA was 5.3. 

Because the PSA was above normal, my doctor advised me to see a urologist as a precaution.  The urologist recommended a biopsy, which I had a few days later.  The biopsy found that both sides of the prostate had cancer cells and the samples were a Gleason score of 6.  The urologist rated the cancer as 'not very aggressive', but still serious.   No one in my family had prostate cancer, so I wasn't prepared for the diagnosis.

I talked to the urologist about my options for about 20 minutes.  He also gave me a list of surgeons, in case I chose surgery.  Then I met with two surgeons and two oncologists to research treatments and side effects.  I talked with other patients, especially Virgil (Note: "Virgil" is the creator of this site), prayed a lot and made my decision.  It was going to be surgery. After all of the people I talked to, I was still the only one who could make the decision.

 The Surgery

I had surgery on September 9, 2002 with Dr. Herbert Lepor at New York University Medical Center.   Before surgery I met with the anesthesiologist and the head operating room nurse.  Both explained the basic procedures.  The surgery lasted about two hours.  Dr. Lepor told my family that there were no complications and that everything went well.  After being in recovery for three to four hours, I was moved to a room with three other men, all having surgery by Dr. Lepor.  The nursing care was excellent.  By noon the day after surgery we were all out of bed and walking.

The first post-op visit was 7 days after surgery to test for internal urine leaks and remove the catheter.  That was a painless and easy procedure.  At the next follow-up at 3 months, the PSA was in the normal range.  I started some exercises immediately after surgery to combat incontinence and I went for a bio-feedback baseline test.   The nurse gave me some additional exercises to help strengthen the bladder's sphincter muscle.  After the first follow-up visit, I also started taking 25 mg. of Viagra a day to stimulate the nerve bundles in the area where the prostate was removed.  (Editor's Note: technically Viagra doesn't aid in the repair of the nerve endings, but provides a stimulus for erectile performance when sexual stimulation (foreplay, coitus, masturbation) is present)

  Now......

Incontinence and depression have been the biggest challenges.   There is no question that I've seen steady progress in bladder control over the past month, but I am looking forward to the next muscle strength test.  This one will be compared to the first.  I want to see the results for my own peace of mind--to make sure I will be back to 100%.   Wearing "Depends" is getting a little tiring.

I am taking Paxil now for depression.  I got it because I felt I was getting too consumed with the side effects of the surgery, especially the incontinence.  I originally asked for an anti-depressant about four to six weeks after the surgery, but I was advised to wait a little longer.  One of the side effects of most anti-depressants is dry mouth.  That would have caused me to drink more, then urinate more--making the incontinence worse.   After almost six months, I still have dribbling and leaking.  It is much improved, but it's still disturbing.  The Paxil really helps deal with the situation. 

For me, surgery was the only option, but everyone is different.  There are a few different treatments out there--seed implants, radiation, hormone therapy, etc.--but I wanted it removed.  Every man has to make the decision that is right for him.  They should read, do research, find out all they can, then make the decision.  There are so many things to consider and it is a decision that will change your life.  After speaking with men from my support group who had the other treatments, I would still stick to surgery. 

  Facing the Future

The one thing that I would have done differently is that I should have shared it with my family sooner.  I hid it from them for as long as I could and finally told them about six weeks before I had surgery.  That was not the right way to go.    They knew something was wrong because my behavior was so uncharacteristic.   My parents were devastated but very supportive.  My daughter, Lindsay, lives two hours away so she couldn't be actively involved.  At the time, protecting them seemed like the right thing to do....but I was wrong. 

Lindsay:  I found out the beginning of last summer that my father had prostate cancer.   The medical situation can't be changed and that's a very helpless feeling.  Thankfully, I can talk to my friends at home and school or family when I need to.  The best thing I can do for my dad is to be there if he needs to talk to someone.

Jim:  Yes, I realize now that their support is very important.  When I tried to keep it from them it only put more of a burden on me.  I tried to act like nothing was wrong.  Meanwhile, your whole world is crumbling.   I was angry for a long time--angry with the doctor who first suggested the PSA test; angry with the urologist who told me I had cancer; angry with God; and on and on....Then I got angry with myself after the operation because I should have been happy to be alive.  The operation went well, but I was still feeling sorry for myself.   With the help of the anti-depressants, my anger at the world has finally changed into realizing how lucky I am.  My family and friends are more important to me. I don't know how I would have gotten through all of this without them, especially Jill.  Work is now a job, a way to earn money, not my life.  Don't get me wrong.  I still wake up in the middle of the night thinking about something I forgot to do the day before or some problems that I have.  But life has a whole different meaning to me now. 

I have been meeting with the three other men who were in the hospital room with me.   After going through so much together, we share a special bond.  We have met socially after our surgeries and will be getting together again next month.  Of course, I will continue to go for follow-up visits with the doctors.  Most importantly, I am more aware of things around me and have more compassion for people.  I think I am living my life a little more freely. 

DC:  Thank you Jim, and Lindsay, for your honest and insightful comments.  Asking for the help you need and sharing the burden with your family and friends--even new ones--are two parts of a successful recovery plan. 
We wish you all the best. 

                                                                Diane Johnson

As Jim's very heartfelt revelation emphasizes, this is a battle that should not be fought alone; there is an unrealized pressure that is part of winning the fight that we don't see at first because we are consumed in the process. More than ever, we must verbalize our fears and concerns to take power away from the cancer and insure that it remains with us. Our friends often want to help us, but don't know how to open the discussion. Our families need to be part of our fight, but we fear bringing them into it because of our insecurities and perceived expectations of what our "role" is. 

Use the nurses and social workers in the doctor's office or medical center to get the inside information you'll need and may not know to ask. There are no "rules" in this fight; whatever it takes for you to beat the cancer is fair because the "prize" is your life.