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Readers share their own prostate cancer battles

"Greetings, Mike, and welcome to the club," began one reader's e-mail in response to the first installment of reporter Mike Stuckey's series chronicling his life with newly-diagnose prostate cancer. We invited readers to share their thoughts - and they did to the tune of  nearly 800 e-mails.
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"Greetings, Mike, and welcome to the club," began one reader's e-mail in response to the first installment of reporter Mike Stuckey's series chronicling his battle against newly diagnosed prostate cancer.

We invited readers to share their thoughts — and they did. Nearly 800 e-mails from men with the disease, those dealing with the effects of treatment and the wives, girlfriends and relatives who love them.

Some rejoiced at how early Stuckey's cancer was caught. Others wrote in memory of those whose wasn't and died.

Some mourned the loss of their sex lives, while others said that was a small price to pay in order to live. Readers offered frank talk, encouragement, advice and a firm welcome to this brotherhood of men.

Here are some of their comments:

My father died from prostate cancer May 10, 2003. I was diagnosed with prostate cancer shortly after returning home from his funeral — May 19. I really wish that I had been able to talk to him about this as a son to father and as one patient to another. He had a good long life (84) and I expect to live as long ... I opted to have radioactive seed implants. Life is not the same for either me or my wife, but it is still good. We still have places to go and sights to see — we probably will not be making love for days without end in romantic spots around the world as we did when we were younger and cancer-free.
—D.J, Lake Havasu City, Ariz.

I e-mailed this story to my entire address book. Well told, my friend! Hang tough! We win when we understand how to deal with the headset, mental space. Thanks for offering to be open about your diagnosis and the coming treatments. My age is the same as yours, as well as your concerns. Live Large!
—Matthew, Sonora, Calif.

Hey Mike, lets not be a sissy about this! I had the "seeds" implanted about three months ago and my PSA went from 7 down to 4 already. Other than a slight burning went I'm pissing, I really don't think about the procedure or the cancer. Don't dwell on the damn cancer. I don't! My life goes on without thinking about cancer. Good luck to you and I hope whatever choice you make gets the job done for you.
—Vincent, Ashtabula, Ohio

I am a 43-year-old African-American, and was diagnosed with prostate cancer in 2004. However, I elected to have surgery to remove the prostate, and it was the best decision I made. Your love life goes on, and you appreciate the little things. I'm still not able to talk to friends comfortably about it yet. Hopefully, I can get the courage to discuss it openly.
—Darryl, Suffolk, Va.

My fiance was diagnosed in January. He caught it early and is fine now other than the lingering problems ... the peeing and the sex thing. I think someone should write an honest book to tell men EXACTLY what happens afterward. Men are left hanging unless maybe they know someone who went through it. They need someone to give them timetables — even though they may be vague — like the incontinence, what do they need to expect. And more importantly, sex. It IS very important. When men have any problem getting an erection they feel like their manhood is gone. Someone needs to tell them what to expect and be specific. They need to know about how an orgasm is afterward, when their erections will come back, what can they do to make it better. Then their partners need to be a part of the whole process. They all act brave but inside they are freaking out. There is so much that could be said that would help men through this. Please help them all.

I am 56, a physician, an avid hiker and five months post radical prostatectomy. I am just now starting to regain my strength and look forward to my summer adventures in the outdoors. Luckily my bladder function returned quickly but I am still grappling with the almost universal ED that follows this type of surgery. The emotional effects of the diagnosis and subsequent surgery with quality of life issues are almost greater than the physical effects.
—Kenneth, Spokane, Wash.

I was recently diagnosed with breast cancer and my cure rate is not as high as Mike's but I'm less worried about that than the treatment side effects as that is the immediate need ... just like Mike says — it's worrisome. It's good to hear the story from another side — I've only heard stories from women lately. I just had my first chemo, will have a bilateral mastectomy and build a new me afterward, which helps me relate to that part Mike wrote about living life the way I used to, sex and all. Thanks so much for sharing.
Lisa, San Diego

My husband was diagnosed with prostate cancer involving both sides of the prostate (and it was heading toward the bladder) in 2002. When we first found out about the cancer we were at Home Depot and my husband got the terrifying news on his cell phone. That night the two of us threw a great pity party and we both hugged and held each other and let the tears flow. We decided that was our one night to feel sorry for each other and ourselves — then the next day we got down to the business of deciding what to do.

We considered the options and decided we didn't want to live with the "what ifs" or the Big "C" in the future so, following consultation with his urologist, we opted to have the prostate surgically removed.

Both of us maintained a high level of optimism once we made the decision to go forward with the surgery. We have a super relationship, we are very close, and our sex life has been very active and satisfying for both of us — thus we were determined not to let this situation create a mountainous problem for us.

My husband had what is called a "nerve-sparing" surgery — and that is what allowed us, after a few months, to resume our loving, sexual, relationship and everything worked out just fine eventually! By the way, my husband is 64 now and he had the surgery just prior to our wedding.

He proposed to me in the hospital and just 11 days later, following our wedding, he was pouring and serving champagne to our guests! We are thankful for choosing the surgery method we did and we believe our strong faith and determination to see a successful result is what got us through the difficult days. After nearly four years his PSA tests continue to be "unmeasureable" — and any "dripping" following the surgery was controlled by medication at first and is now gone. So this is a message of hope for you to hang in there! I know it is scary, but there ARE better days ahead!
—E., Hayden, Idaho

I lost my father 4-1/2 plus years ago to prostate cancer. The truth of the matter is that he waited too long. I guess men really have this fear of what will happen to their manhood. How sad. My father has missed countless firsts such as his grandson's first baseball game, band concerts, his granddaughter first softball and winning run (I could go on). I guess the moral of my story is don't wait to get tested. I miss my father, I had only 21 years with him. I met my father when I was 16 years old.
—Janet, anonymous

I have had prostate cancer and have shared many of your feelings. I am 59 and had surgery last October. I had problems with incontinence but that went away. The bigger problem is the lack of any sexual response. The feelings are still there. It is difficult as it is not easy to talk to people. I went to a sexual therapist and he spent about three minutes with me. I am pleased that you are publishing your experience. It is needed. Good luck and don't read too much on Internet.
—Ned, Henderson, NY

I was diagnosed at 49 years old also. Similarly I wasn't nearly as afraid of the cancer as I was of the "side effects" of treatment. I now refer to them as the after effects, because they're not some miniscule nuisance like a runny nose. After surgery I went through about eight to nine months of depression like I never had before. After the catheter was removed and the incontinence was severe for a while, I was suicidal. I was making plans on the best way to have an accident so my family would be taken care of. I just held on thinking that it had to get better, but if it didn't I had a plan. I didn't feel I could live with constant incontinence. After a while the incontinence improved to the point where it is manageable. Post surgery 18 months and I'm still wearing a pad every day. Some days it's dry and others I leak a small amount.

So, about sex. At first I didn't worry about it because with the incontinence there was no way I wanted my wife anywhere near my crotch. As things improved, attempting sex became acceptable as long as I got out of the shower and straight to bed. Forget spontaneity! Oh yeah, the doctor said the operation went great, both nerves were spared. So, I've tried Viagra and close medications with minimal results. Then the pump. Looked good till the pump came off. Now injections. That's working, sort of. I can get a usable erection. It lasts for three hours! So unless your partner has an incredible appetite, you end up with a painfully stiff erection till the medicine wears off. Smaller doses have not eased the problem because then the erection has been unsatisfactory. Also, the doctors rarely mention that after the surgery a good number of patients have atrophy of their penis! I definitely was never told.

My wife has supported me every step of the way in this disease treatment. Emotionally and physically, she has been there for me. I know she is no longer satisfied sexually. I feel so emasculated and ashamed if people knew my private secrets. Sometimes I wish I was never diagnosed and lived blithely till it took me at some future time.
—Anonymous, Asthma, Mass.

My Grandpa died of prostate cancer when I was 28. It was not a pleasant sight to see. I made a pact with myself then that when I reached 40 I would have an annual exam. I was fine at 40 but when 44 rolled around I was diagnosed with cancer of the prostate. I thought, "Its over." The doctor told me I was one of the youngest he knew of to have it. He assured me it was one of the slowest growing cancers but that I was smart for starting my annuals at 40 instead of later like after I was dead from it. I opted for removal. Yes, I was afraid I might lose my sex life but hey, I would still be alive. I'm now 50 and everything is fine. I have no problems at all, I pee when I want. I can stand at attention and hoist the flag up high all without making a mess of things.
—Kurt, San Jose, Calif.

I have a number of male friends who have been diagnosed (albeit early) with prostate cancer. My uncle just had his "homecoming celebration" last month after fighting for seven years against the disease. As a woman it was extremely interesting to read Mike's realistic fears and emotions when faced with this disease. It's so rare when a man shares his true feelings. Mike's commentary was a touching tribute to those who have suffered pridefully behind closed doors. Women fear breast cancer and the fact that sometimes when stricken with the disease one alternative treatment strips them of their femininity and sexuality. Mike's comments made me realize how men must feel when faced with a similar diagnosis that they fear will strip them of their masculinity.
—Lynne, Cumming, Georgia

Greetings, Mike, and welcome to the club. I also, was a healthy male with no known family history. After two high PSA tests and a biopsy, I learned of my prostate cancer and a Gleason Score of 6. An early-average score. After the call and some reflection, I cried for my three teenage children. "Why now, Lord, I haven't finished." "I have things to do." Even as a career police sergeant, I've always felt a sudden relief after a short cry. Strangely, they were in no hurry to treat it, but I chose to have it removed ASAP ! I felt that any attempt to treat it by radiation or chemo would be foolhardy and only slowing the inevitable.

After surgery and recovery, and due to my relatively young age, the mild incontinence lasted only about two weeks. Whew. As a police officer, this was my biggest fear. Strangely, sex was my third priority, even though I am very active sexually. My urologist was pleased that he found during surgery that my nerve bundle "sprang back" wonderfully. I think he was a bit premature, as I have only regained about 75 percent erectile function. (Better than most.) I feel fortunate because I have no incontinence and can have sex without an aid. Two years later and —Jim, Virginia Beach, Virginia

No, I have not been diagnosed with prostate cancer, but rather breast cancer, and a "hot spot" somewhere else. I am just at the beginning of my treatment with one treatment of chemo under my belt. My husband read this article, and it helped him to understand from a man's point of view just what I might be feeling. Hearing it "from a man," instead of the emotional ravings of a woman (his wife) helped him understand that I wasn't the only one. Thanks for publishing this story, and I will be so interested in following it, just as my own story will unravel. Mike has a mantra, "hello fear" and mine right now is to "celebrate today" for if I waste a moment of it, what a waste that would be. I wish I'd learned this earlier in life, instead of sitting around wasting a minute of it. Anyway, thanks for publishing this story.
—Cindy, Cardiff, Calif.

My husband had prostate cancer and decided to have his prostrate removed. He too was numb when he heard the diagnosis and it took several days for it to sink in. He decided to have it removed which was the best thing he did I believe. It was caught early and it's size was small. He is a cancer survivor and believes he did the best thing by having it removed early. He did not have the leakage they warn you of and there are pills that take care of the "no more sex threat." At least he can go to sleep knowing he won't die of prostrate cancer. I know he did the right thing!

I feel your fear for this dreadful manly disease that you now have. For you see I'm a prostate cancer survivor myself. Mine all started in the summer of 2000 at the age of 55 and I was just starting to look forward toward retirement and playing a lot more golf which is one of my passions in life. I knew what I was up against because my father had prostate cancer and I had two uncles that had died from this disease. But this didn't stop me from wanting to know more about this enemy that was in my body and what was the best way to get rid of it.

After talking to a lot of prostate cancer survivors, reading books, getting on the internet and with the support and understanding of my loving wife and a great doctor I had surgery on November 13, 2000. And I still have a great sex life and I haven't peed down my leg once. I think what really got me through that summer and fall of 2000 was I kept telling myself that you don't need to have an erection to play golf and that there was a lot more things I wanted to do and places to go. So let's get it on and get it over with and get on with this great thing called life.
—Larry, Woodland, Calif.