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Readers recall pain, pride of cancer recovery

In the last installment of "Low Blow," reporter Mike Stuckey wrote about having surgery to remove his prostate and the line between humility and humiliation. His experiences resonated with many readers.
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In the last installment of "Low Blow," reporter Mike Stuckey wrote about having surgery to remove his prostate and the line between humility and humiliation. His experiences resonated with many readers who wrote in to share memories of their own treatments.

Some recalled their own embarrassment at surgery's side effects. "I never feel confident enough not to wear a pad. The embarrassment would be too much," said one.

One woman wrote defiantly that the man she loves may have the obstacles of surgery recovery ahead "(But) my husband is not going to die from prostate cancer."

Not all of prostate cancer's effects are physical. For some, the diagnosis also brought a new appreciation for each day and the people they love. "Cancer opens your eyes. ... My wake-up call is that my family is important, not my work," wrote one cancer survivor.

Read on for more reader's responses:

I work for a urological practice and I must confess, seeing the patients and their families can be rough. I have assisted on nearly 1,000 prostate biopsies and I can testify that the men undergoing them appreciate me being able to comfort them during the procedure and tell them step-by-step what will happen. I can tell them that the anticipation is the worst part. When the results come back from the lab, positive or negative, there is a relief that the patients experience. There is finality to their suspicions, or lack thereof. Eventually it does hit them, and sometimes their families are unable to comfort them. This is where the medically trained support comes in.

I tell them that a diagnosis of cancer is no longer a death threat as it was 20 years ago. I also can give them my experience of losing my father, grandfather, and numerous other relatives to cancer. The patients, at that point, realize that I'm not just another nurse trained to say these things. I become their emotional crutch and I am glad that I can take some of the anxiety off of the shoulders of family members. They also realize, as I do, my day is coming. I am a 32-year-old male with a family history of cancer. I can honestly say that when that day comes I will try to face my fears with dignity and poise. To all of you men out there just remember you are not alone.— Mike, State College, Pa.

Thank you for your most informative report. I am 61 and in outstanding health. However, my PSA started to rise rapidly and my doctor was concerned enough that he sent me to a urologist for a more thorough exam. He monitored me and when the PSA continued to rise, recommended a biopsy. (Mike Stuckey's stories) prepared me so well for the experience that there were no surprises at all. I am pleased to report that the results just arrived and everything is benign. Please tell your readers that sometimes a rising PSA — according to my doctor — is just a sign of an enlarged prostate (my situation) and not necessarily something dire.
— Anonymous

In 2002, at the age of 53, I met the love of my life! He was then 74 and had been told that he had an elevated PSA of 4.2. Following his doctor's advice, he was undergoing "testosterone deprivation" therapy — and hated it. He had always pursued a very physically active, healthy lifestyle and the loss of testosterone meant lack of muscle tone and many other side effects (including sexual ones) that he wasn't willing to live with. He did all of the same research others have discussed and opted for brachytherapy with a doctor involved in pioneering the procedure in Seattle. That was four years ago, and it was the best decision he could have made. It did take a while for him to build up his testosterone using a cream applied in the morning and at night. His PSA remains at 0.10. Most important he is back to his old self — he works out at a gym five to six days a week and looks 10 years younger than he is. Sexual function is excellent — something we enjoy almost daily, and rarely with the assistance of the little blue pill.
— Mary, Palm Springs, Calif.

My father was diagnosed with prostate cancer in the 1980s, and the only treatment at that time was to have that part of the prostate resected. His life with his wife was not ideal after that and he didn't complete a follow-up every year as he was supposed to, simply because he was embarrassed and afraid it would further put a wedge between he and his wife. Then in 1995, he was diagnosed again with prostate cancer, and at that time he had a total radical prostatectomy with lymph node resection. He then had metastatic bone cancer develop within two months of his surgery and died three months later.

There is no excuse for a man not to at least get a PSA test. That in no way is embarrassing. I can understand where men are uncomfortable with the physical examination part of the prostate exam. Thank goodness technology and medicine has realized this as a huge, huge problem among men and in some cases, grossly undiagnosed. Men - do what you need to do to take care of yourself. Women do it once a year, every year and thousands of women's lives have been saved by those exams. Your life can be saved by a simple blood test. Do it now! Do it for your wife and children if not for yourself. You just might save your life.
— Diana, Louisville, Ky.

I am now 72. Six years ago I was diagnosed with prostate cancer. I needed time to think and told no family or friends about it. I spent hours researching on the internet, consulting with specialists and with men who had been through it. I was at a very early stage and my urologist said that I had time to think. My major concern was quality of life. I didn't think that I wanted to live with a diaper and I also felt that sex was very important. I wanted to minimize risk in these fields, I had enjoyed a good life and didn't want to ruin the rest of it. I didn't and don't think that life as a burden to myself and my family is worthwhile.

A study that I came across at the time, which dealt with the quality of life after treatment by three methods — surgery, radiation and brachytherapy — convinced me to reject surgery. It was a toss up between the other two. I also felt that watchful waiting was a reasonable alternative. Since it was caught at an early stage, I figured that I might just die of something else before the cancer spread to the bones. At that point I informed my family of my condition and of my decision. Eventually the oncologist with whom I had been consulting discouraged further waiting and insisted that I start one of the two treatments. Her argument against further waiting was my otherwise excellent health; she felt that I had many years ahead of me and that the cancer would get me in the end. Then she went on to describe what a lousy death it would be. I set appointments for both brachytherapy and for external beam radiation, but went for the latter only because I got an earlier date for that.

It is over five years since the treatment was completed. I'm still here. I feel fine; I don't leak at all and thanks to Viagra/Cialis, sex still works. My PSA never dropped to 0. It has hovered around 2.0 during the entire period and my oncologist, who continues to watch over me very closely, thinks that I can stay that way for a while yet.
— M., Tel Aviv, Israel

Although the general tone of the writers you chose to print in (the last) "readers share" section were all very positive, the majority of prostate cancer survivors don't have the wonderful results of your reports. I was diagnosed and treated at age 49. Eighteen months later I still leak slightly and wear a pad every day. Some days there's nothing and other days a quarter cup of urine. I never feel confident enough not to wear a pad. The embarrassment would be too much. Erectile dysfunction is still a problem too. Injections have been the only successful treatment for me. One side effect I haven't seen you present is penile atrophy. About 20 percent of patients undergoing radical prostatectomy suffer this. I went from a baseline of 6 inches to 4 inches. It knocks the hell out of your confidence even when the injections finally worked. Patients trying to make the choice of treatment should also be advised of this possibility.
— Anonymous

After I was diagnosed with prostate cancer, my urologist asked me if I would be willing to participate in a study comparing radical prostatectomy with brachytherapy (implantation of chips of radioactive iodine). The catch was that I had to accept being randomly assigned to one treatment or the other. I spent a couple of weeks reading the literature and considering the options, satisfied myself that the data simply doesn't exist to demonstrate that either treatment is to be preferred (hence the study), and consented. I was assigned brachytherapy; they implanted 88 little chips in me. The Iodine-125 has a half-life of 60 days, so I was intensely radioactive for a few months. For awhile I felt a burning sensation during urination and immediately following orgasm and an urge to run to the toilet whenever I heard the sound of running water, but otherwise no side effects, neither impotence nor incontinence. I had the brachytherapy three years ago, my PSA is virtually undetectable. So far, so good. I should mention, though, that the study was cancelled for want of patients willing to accept random assignment of treatment, and this is a shame. Medical science cannot progress if people are unwilling to participate in such studies.
—  Jim, Burlington, Vt.

The use of the term "roller coaster" is the best description for this prostate cancer ride and one I have used for 11 years. My husband died in January, 11 years after getting the diagnosis and the surgery — not with a robot or even a lap. He was 50 years old. We had five more good years and then five years of hell. I wish that your roller coaster ride will continue to go smoothly for you and your loved ones. May it never derail or hit a brick wall because I can assure you that kind of an end to the ride is painful. God bless.
— Trish, Colorado, Springs, Colo.

My husband is currently recovering from prostate surgery. He had the surgery five days ago and the staples come out in two days. The surgery and the recovery wasn't what we worried about. Choosing what treatment to take or rather how you want to save your life was the struggle. After the decision on what type of treatment was made, the weight of the world was off our shoulders. As my husband said from the beginning, "I want it gone." We received the pathology report today and "it" is indeed gone! There isn't anything to worry about now. My husband is not going to die from prostate cancer.
— Karen, Trinity, Ala.

I did not have prostate cancer but I did have colon/rectal cancer and all the descriptions in the article are true, but Mike Stuckey misses the point. The most important things are your loved ones helping you and letting go of your fears of not having control. You have some but cancer limits your ability to do things for a while so take it a day at a time.

Every day when you wake up, thank God and thank your loved ones you're alive and kicking since it is a great day to be alive. Get out of the house, walk around, smell the air, enjoy the colors around you, take a drive, get some good food and good company and have a picnic in the mountains. Cancer opens your eyes. It makes you look at your life hard and it changes you if you survive the cancer and gives you a second chance as to what is really important. My wake up call is that my family is important, not my work. In talking to priest when I was in the hospital, I said, "Father, I think I am in the garden of Olives with Jesus." He asked me why and I said, "Jesus knew what he was facing and the outcome yet he stepped up to his life's path and meet it with courage and dignity. Can I do no less than that with my cancer?"  My cancer advice is you are NOT ALONE be brave walk the path and do it with your loved ones.
— Mike, Anchorage, Alaska

After working out of town for three years, I told my husband it was time for a physical. His PSA was 8, so he and the doctor went on the search. He has prostate cancer and his robotic surgery is tomorrow. David is handling it as a "bump in the road" as I had emergency surgery for lymphoma in 1993. Cancer has been a force to be reckoned with in our family and there is no history till now! The most difficult thing right now is the bills that have already come in and how to find money to pay them. Any suggestions on charity? It's humbling, but necessary.
—Kathy Sue, Woodbine, Ga.

Mike, my husband went through the same surgery 14 years ago. Also very physically active, he has come to terms with his physical limitations but mentally he still has some adjusting to do. There is a grieving process for you to go through, just as a woman facing a mastectomy does. Keep your chin up, Mike; you survived for a reason. Keep writing truthfully!
— Kathleen, St. Louis, Mo.