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In control: Readers share treatment decisions

In the shadowy landscape of cancer, one area where patients can have control is deciding on their own treatment. In response to MSNBC reporter Mike Stuckey's prostate cancer series, myriad readers wrote to share their experiences and decisions.
/ Source: msnbc.com

In the shadowy landscape of cancer, one area where patients can have control is deciding on their own treatment.

"I am in charge of when and to what degree I stop living," one man diagnosed with prostate cancer wrote after reading MSNBC.com reporter Mike Stuckey's ongoing series about his own journey.

Another man explained he felt like a wimp for being anxious about his upcoming surgery when there are soldiers fighting in Iraq. "It's like waiting for the rest of your life to start ... perhaps a bit like waiting for a battle sure to come."

Other readers wrote in about their battles to find a new normal, and of their fears that the treatment wouldn't be worth it in the end. "Will I win? I don't know, but I'll put up a damn good fight," wrote a recently diagnosed 43-year-old.

Read on for more responses:

Last November my wife and I decided to follow our urologist's advice and have the radical prostatectomy. One reason: My brother had the seeds implanted eight years ago and his prostate cancer returned. He's now on hormone treatments and who knows about his future? Will he, on average, live past the three years stated for hormone treatment? I now have a 0.0 PSA and am no longer worried about survival. The side effects are another issue. Leakage still a minor issue. Sex is a challenge. Viagra didn't work, nor did injections. A "vacuum therapy system" using a pump and rings work fairly well and my wife and I are both fairly satisfied. Bottom line: What's your life worth?
—Jim, Brevard, N.C.

My husband was diagnosed with prostate cancer last year. He was 43 years old. Pardon the cliche, but it is truly an emotional roller coaster. My husband said his biggest concern was incontinence. Then impotence. I wanted him with me to see our grandchildren. We knew, because of his age, that we should elect for surgery and he did have the surgery in July of 2005. He had a laparoscopic radical prostatectomy. His surgeon was excellent and compassionate.

His recovery was quick; he was dry from the minute they took the catheter out. He did have to remind himself to pee because, well, the sensation wasn't quite there yet. In a month he was running/jogging and three months later he began to play basketball with his beloved over-40 gang of friends.

Sex? How can a Catholic school girl put this delicately? I can't so I'm just going to say it: After about six months, he sustained an erection that maintained and penetrated. Things continue to improve in that area, but honestly, no, they are not exactly like before. But then again neither am I. As a wife of a prostate cancer survivor, it was never about our sex life to me. I married my husband because he made me laugh and made me feel safe. He continues to do so. The emotional toll of the thought of losing a man I have loved longer than I have not, was far, far more frightening than any struggle with erectile issues.

Some things remain difficult, and sometimes you just have to laugh. I still pray like a nun before each PSA. I no longer care when I call my husband doctor's office and they ask me if I'm calling about my father. Life deals one many deeper and injurious insults. We dodged a bullet, and he's here with me. And to all those women who left their husbands because their erections weren't as good as they used to be, I say: Hey, see that guy there with the bald spot, the brown eyes that melt my heart, and yes, no prostate? He's with me.
—Jane, Hopedale, Mass.

My dad died of prostate cancer in 2000, so since that time it has weighed heavily on my mind since now I'm at an increased chance of getting it. I'm on the cusp of turning 50 and for the past six years I've had a yearly prostate exam and the corresponding PSA test. So far, so good, but I think about prostate cancer — and my dad — often. It didn't help matters that my wife was diagnosed with breast cancer in 2003, but is doing fine as I write this. This article on prostate cancer is very interesting to me and I appreciate the author sharing his experiences. It sure makes me think what I would do under similar circumstances. I wish him a complete recovery.
—Anonymous

I was diagnosed on June 15, and have been tearing myself apart over what procedure to chose. Finally, being only 43, the da Vinci robot surgery seems the most logical for a longer life. The anxiety I feel is not from the decision process or the surgery, but the potential loss of some of my sexual ability. I feel like a wimp for feeling such anxiety — I mean look at those guys in Iraq — but then again if I had a M16 to defend myself with maybe I would feel a bit better. Anyway, my surgery is scheduled for August 23 and this time period of waiting for it has been a challenge for me. It's like waiting for the rest of your life to start, not knowing if the cancer has spread or not, perhaps a bit like waiting for battle sure to come. Will I win? I don't know, but I'll put up a damn good fight!
—David, Calera, Ala.

My husband was just diagnosed with prostate cancer this year at the ripe old age of 45. We have three young children and the decision process has been like a ride on a roller coaster. Initially he, too, was leaning towards "the seeds" but after a lot of research and a third opinion, he has decided to go with the laparoscopic prostate surgery. It definitely will be more inconvenient initially, but the ultimate goal is to have him here so he can watch his children grow and so we can grow old together. Good luck to you, Mike, and to all the other men out there who are going to the same emotional amusement park known as prostate cancer.
—Donna, N.Y.

I was diagnosed with prostate cancer in February. The week after I received the news, ABC ran a series on ways to treat prostate cancer. One was robotic surgery. After seeing the report I did some heavy Internet investigating. I found two hospitals in Michigan, Henry Ford Hospital and the University of Michigan Hospital were some of the earlier pioneers in this procedure. I just completed the surgery. Although there were some complications with me keeping my blood pressure up during surgery, which caused me to lose more blood than normal and be in the operating room for six hours instead of three, the surgery was a success. After three weeks I'm up walking and feeling almost as if nothing had happened. The pathology reported that the tumor was contained to the gland and that the margin areas looked clean. After agonizing early on with what to do, I'm pleased with my chosen path in treatment of my cancer.
—Chuck, Grand Rapids, Mich.

I am a 44-year-old who got the diagnosis back in May. The decision to go the surgery route was not very difficult for me. Given my age, my primary consideration in doing so was the long-term outlook. It has now been almost two weeks since I went under the robot. I had a short hospital stay (24 hours) and my recovery has been rapid. Perhaps the worst part of the short post-op recovery was having a catheter attached which, to my great relief, was removed six days after the surgery. The day my catheter was removed, I arrived at my doctor's office prepared with one of my wife's pads. I'm happy to report that there has been no "leakage," thus no padding since that day (one week ago today). On the other hand, I haven't yet awakened with my old pal "woody" and was told it will be some months before he gradually makes his return. Also, I can still sense a slight discomfort during urination which I attribute to the catheter — mine seemed a bit too large in diameter — and my guess is that it'll take a bit of time for the urethra to return to its original size and shape. On the whole, I feel quite positive about my experience so far.
—Anonymous, Scottsdale, Ariz.

I have just turned 54. I lost my father, a physician, to prostate cancer several years ago and it has made me much more aware of the disease. He ignored the symptoms (I think he knew)until it had reached the "too late" stage for him to fight it with much hope of a successful outcome. I have my PSA tested regularly so that I hopefully won't suffer the same fate as he did if I am ever diagnosed with prostate cancer. In 2002, I was diagnosed with oral cancer (squamous cell carcinoma) on the right side of my tongue and I had a portion of my tongue removed. My dentist found the cancer during a regular visit — he saved my life! I was/am truly blessed. I didn't have to have chemotherapy, speech therapy or radiation. It was all removed with surgery! This has made me much more aware of prevention, regardless of the problem.
—Lee, Tennessee

It's been four weeks since my trip under the da Vinci and, frankly, it was the right decision. The surgery itself was a breeze. (At least I think it was. My only role was that of the body in the room.) The recovery has been easy. Now, the road to "normalcy," on the other hand, is long but certainly tolerable. The only thing I miss is my bicycle. The doc says I have to be "completely dry" before I can ride my bike and that could be months. I miss sex as well, but we're making progress on that as well. (I'll leave the definition of progress to your, no doubt, vivid imaginations.)
—Charlie, Seattle

I underwent the robot surgery in July 2004. My search for the best option was exactly the same as (Mike Stuckey's). The robot was the right choice — no regrets. No incontinence, normal erectile function coming back to almost full strength and 150 perfect with Viagra.
—David, Haslet, Texas