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Let's talk about sex: Readers respond with fears

Sex.  That's what many readers told us was one of their top concerns in deciding how to treat prostate cancer. About 700 readers replied when we asked them to share how they decided between "watchful waiting," surgery, radiation or other treatments.
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That's what many readers told us was one of their top concerns in deciding how to treat prostate cancer. About 700 replied when we asked them to share how they decided between "watchful waiting," surgery, radiation or other treatments. Many were afraid of the end of intimacy, how the side effects would affect their wives and about what it meant to their manhood.

Some said the hardest part was weighing the myriad information to make an informed decision. Others said it was fear of incontinence and loss of erections. One widow wrote to tell reporter Mike Stuckey to "stop whining" and be glad he had a shot at life. "Dead men can't make love," wrote another.

One cancer survivor said when he was mulling treatment decisions, his doctor advised, "You have one bullet, use it wisely."

Here's what else readers had to say:

Radiation was my choice. Curing cancer was the main issue. I loved sex, but it is gone. Do you want to live or is sex more important? I am married (40 years) with five grandchildren and I am 65 years old.
— Jim, Henderson, Nevada

I am a 43-year-old urologist and was diagnosed with prostate cancer at age 41. I had laparoscopic surgery and have enjoyed a favorable cancer and continence outcome. The sexual side of things is a different story. I did have the nerve-sparing technique, but did not have any return of functionality. As a urologist, I get the chance to visit with a number of patients in my same situation. I have found that many men have return of some erectile function after surgery. I still have yet to meet a patient of mine or others that has had "normal" sexual function. With this in mind my approach to my own patients has changed. I am inclined to share my own experience with my patients. We talk frankly about what this can mean in their lives. We then figure out the psychological role the cancer plays in their life. For some, getting it out is the only safe piece of mind. For others, having sustained sexual lives outweighs the other downsides of radiation. This has been the most radical shift in my patient care philosophy.
— Carrington, Dallas

The choices were not that tough. I followed what the doctor recommended was the best for my long-term survival. I opted for the radical prostatectomy. After surgery the doctor said the tumor he removed was "a widow maker," so I guess it was the right decision. The after effects have not been easy to deal with ... the sexual dysfunction.. I can truly relate to everything written in your column and by those who have responded. It has been a very difficult challenge to cope with. I  can only hope the future may be better.
— George, St. Louis, Mo.

I got prostate cancer when I was 38 years old. I am now 48 and have been married for 28 years. The hardest part in losing my prostate was the fact that I could not just have sex whenever I wanted to. I thought that because I couldn't have sex whenever, my wife would leave me. ... I sometimes wish I had never had the surgery but my doctor said I would not live to see 50 years old if I didn't have the surgery. I am lucky that I have a very supportive wife. There are times that I just want to cry about this but I am blessed with a good wife and kids. My only advice is to trust in Jesus. Between me an God there is nothing I can't handle. I no longer let sex rule my life. There are medications that can help with that problem. More than anything don't be afraid to talk to someone about what's bothering you. And please tell your friends to get checkups.
— Mike, West Monroe, La.

The toughest choice I had to make was what treatment to have, I chose to have surgery and have my prostate removed. Four years later I'm still dealing with erection problems. This cost me my marriage two years ago. Now I have a great relationship with a wonderful girl who has helped me deal with the problem. I do not regret having my prostate removed. If I had it to do over I would do it.
- Norm, Warren, Ohio

I worked for a law firm for many years and saw many death certificates. I never saw one like my father's. His read: Respiratory arrest in minutes, renal failure in days, prostate cancer in months. He was diagnosed with non-specific prostate cancer seven years before his death. He sought radiation as a treatment. An active 62-year-old man, he lived on blood thinners. His prospects involving surgery did not sound attractive to him — impotence, incontinence.

The radiation reduced his PSA to something acceptable and was deemed successful. Then a few years later, his PSA returned to 8. His urologist began a treatment of luprone injections. This course of treatment would reduce the production of testosterone. Apparently, prostate cancer feeds off testosterone.

Three months before his death, he had severe pain in his back. The radiation treatment produced scar tissue in the urethra so he was experiencing difficulty urinating. His doctor said we can transport you to another hospital where they have the capacity to perform neuphrostomy or you can stay here and in a few days you won't be with us any longer. Dad was no quitter. Excruciating pain, CT scans, long stays in the hospital. The next time I saw my father he looked like a cancer patient. He acted like a cancer patient, too.

Determined to live, he sought chemotherapy as the next phase of his treatment. His oncologist told him his chances were one in 5. Dad said he would take those chances. They were better than nothing. He began chemotherapy the first week in June. He died July 14. I believe the only thing the chemo accomplished was to hasten his death. Yesterday would have been my father's 76th birthday. Dad knew how much I loved him. Only God knows how much I miss him. A day doesn't go by that I don't think of him. I think of him all the time. Every morning for six months following his death, I sat with my coffee and cried. I thought of him and his ordeal. I missed him.

When someone tells me "You have cancer," my first thought will be how soon can it be removed from my body.
— Anonymous

The choice of treatments for this cancer suck. I choose surgery eight months ago. I felt it was the best choice for the long haul, including if cancer came back, since it still left the door open for radiation. I can't believe that our sons will have the same type of surgery as the only option. I am continent most of the time. I have a scar from the navel to the pubic bone — no big deal — but whoever stitched me back up left a nice roll of fat, skin and muscle right where the the belt rests. This makes it difficult to fit your clothes properly. An erection — what is that? The doctor told me he saved the nerves! You can't prove it by me. What a tragic end to a wonderful sex life with my wife! I have my life, but I lost a lot. I lost more that what I want my sons to lose. There has to be a better way. Is the cure worth it? Only time will tell.
— Greg, Cleveland, Ohio

Mike, I am facing the same issue you are facing. I am 55 and fairly healthy. The biopsy was very uncomfortable, the diagnosis was a slap in the face with a fist and now the choice. I think, no decision yet, that I will go with laparoscopic surgery and get the cancer out. I will deal with the, hopefully, "small" problems later. I can think clearer "cancer-free." My wife died in 2004 but with her illness we didn't have sex for 10 years before she died ... I still loved her no matter what.

I too have a new relationship but we both agree life together is better than life apart — sex or no sex.
Michael, Somersworth, N.H.

I was diagnosed with melanoma at age 37 and 18 months later with breast cancer that required a mastectomy. I was so afraid at how it would affect my sex life and marriage as I opted not to have reconstruction. Today, I'm 47, cancer-free, and believe my marriage is stronger than ever. It's a matter of defining a new sense of "normal" for your life. Your value as a man is not based on whether or not you can have an erection. Instead, define yourself as the man who is willing to share his personal journey candidly and publicly, as the man who is bravely facing this battle, and as the man who will win it.
— Judy, Raleigh, N.C.

(The most difficult part of my decision) was my love of sex and the fear of not being able to pursue that love. A year later after combined radiation treatment and brachytherapy at Johns Hopkins in Maryland, my PSA is 0.3 and "Mr. Happy" is pretty happy. No real side effects, thank God, but the radiation did wear me out. All in all, I feel I made the correct choice for my situation and diagnosis. Also, the oncologist and her team were the real difference. Without them and their constant support, I'm not sure if I could have kept up the positive attitude.
— Gregory, Annapolis, Md.

My father is dying of prostate cancer. He chose to not have the surgery eight years ago because of his younger wife. (We lost my mom to breast cancer in 1987.) I know he wanted to be there as a man for her, but he hasn't been there for quite a number of years. He has had many complications and hasn't been the man he wanted to be any way. I watch him daily in so much pain and suffering that I hurt.

I know he regrets not having the surgery due to the quality of his life. He is wheelchair-bound or in a motorized lift chair. He won't be in a hospital bed because that takes him back to my mom. My stepmom doesn't realize what it means at this point now because he has been so close to death so many times. She thinks he will spring back but I, with my oldest siblings, know the signs. I know he is tired and ready to quit the fight.

We are a strong family and will survive but he could have been here with quality and quantity of years to come, in my personal opinion, if he had submitted to the surgery. I pray for all the cancer stricken people and their families to have strength, and have plenty of friends and family around them.
— Brenda, Clovis, Calif.

My partner has been incapable of sustaining an erection since his surgery in 2001 despite the new surgical techniques. The bottom line is that we have had five wonderful years together and the absence of traditional sex has not been a great loss. I feel that it bothers him more than it bothers me.
— Anonymous

When my husband was diagnosed with prostrate cancer and we had agreed upon surgery as the best treatment option for us, I kept reassuring him that sex was not the important issue here. Keeping him alive and well was the part we needed to focus on. The ultimate low blow came as a result of being prepped and ready to be rolled into surgery when the anesthesiologist looked at the EKG stating that the surgery couldn't be preformed due to heart damage. Needless to say, surgery was postponed because my husband had a silent heart attack that was completely unknown to us. Fast forward three months later, he had to have hormone therapy followed by radiation. You haven't lived until you have your 59-year-old husband goes through menopause symptoms! He certainly feels bad that sex is no longer a physical part of our life, but I'm just thankful he's doing well. (So is he, he just would like to get that little buddy back up!)
— Elle, Pittsburgh, Penn.

By far the toughest choice is the one Mike is making now — how to treat it. At his stage, with his PSA and Gleason score, there's an excellent chance it's the last choice he'll have to make because his choice will result in a cure. Weigh this, though: If surgery doesn't work it's not difficult to try radiation. But if radiation doesn't work it, can be very difficult to try surgery. (I went with da Vinci surgery)
— John, Canandaigua, N.Y.

My husband was diagnosed in October 2005. We had the Da Vinci procedure done the Monday after Thanksgiving 2005. Our once quiet normal world was turned upside down. We went from talking about the upcoming holidays to PSA readings, Gleason scores and doing pre-surgery kegal exercises. I supported my husband the best I knew how ... I was there with him every step of the way. I took the vow in sickness and in health. You never really think that you will be nursing your husband back to health. I had to bathe him, drain his catheter and even better yet, he had a drainage tube that I had to drain and record measurements. I never thought twice about anything I did. We were in this fight together. I made him get outside and walk. Sometimes we only made it a few feet and with time we finally made it around the block. We are almost eight months post-op. We have had two good PSA readings and we have another one in two weeks. We have actually grown much closer through this experience and I am very thankful that God brought this wonderful man into my life.
— Debbie, Princeton, Ind.

I was diagnosed with prostate cancer at the age of 37. My father died of prostate cancer at the age of 61. His three other brothers all got it as well, but because of my dad they all had surgery and had it removed. All are doing well to this day. Not only did my dad save his brothers' lives, but he saved mine. I was single and never married at the time I was diagnosed, so the fears of (loss of) erections/sex was the biggest issue for me. I did not get the option for radiation or seed implants or even "watchful waiting." I had two options, laparoscopic or open surgery. And I had one month to decide.

Since there is not much information to research on and especially for someone my age, I found myself struggling with which way to go. My doctor said..."Aaron, don't pick the procedure, pick the surgeon." And he was right. I knew I was in good hands with the surgeon and felt that whichever procedure I chose, he would do it with success. The younger you are, the greater chance of recovery and the greater chance that everything will work fine again. It may take awhile but this is a far trade then the alternative.
— Aaron, Chico, Calif.

As a wife of prostate cancer survivor, I can say that age is a factor. I married my husband post-surgery and knew his situation (he did not have nerve-sparing surgery). I was 50 when we married and he 55. I think a younger woman would have more difficulty adjusting. We have tried MUSE, and Viagra — MUSE is OK — I guess we have settled in to our relationship and although intimate, the actual sexual activity in any form has diminished. I love him very much and I know he would support me as I support him if I had a diagnosis that changed our lives. It is a matter of perspective, love, understanding. There are always toys — think of lesbians they have good sex lives with penile penetration and oral sex. Be creative — love will always find a way.
— Brenda, Canyon, Texas

My toughest choice was the type of treatment. How would it affect the quality of my life, how long I live and (how it will affect) my wife. I chose radiation and completed my treatment about five weeks ago. No regrets, so far. There is always the fear that the cancer could return. Then what?
— Gary, Houston, Texas

My man had the surgery. The hardest thing was what treatment to choose. He didn't have much time as the doctor wanted to start treatment right away. Yes, he has many regrets now. It's been over a year and he still can't pick up anything over eight pounds and if he does, he is in pain for days after where he had his surgery. I have been with him all the way — fighting him at times cause he wants to give up. The depression is the hardest to fight, and he gets depressed a lot. When he had the surgery, the doctor didn't spare any nerves and now is trying to treat the impotence without great success and a lot of disappointment on his side. I love him and will be with him as long as he'll have me, better or worse. This medical problem hasn't changed my feelings for him.
— Cassie, Gallup, N.M.

I was treated for the very same type and stage of prostrate cancer at 58. My doctor put it best when he said, "You have one bullet, use it wisely." I chose to have the prostrate removed and not to have to worry about it again. The doctor did spare the nerves and almost immediately within a month I had an erection, however it stopped happening for a while and I took Cialis for about three to four months. Within seven to eight months, things were normal without any medicine. One note, you still experience orgasm but no ejaculation. I do not regret my treatment option and look forward to a long healthy life.
— Jerry, Punta Gorda, Fla.

My name is Amber and my father, whom I love dearly, was diagnosed last year the day before my 20th birthday. I felt numb like nothing else mattered and it's so hard to talk about because I tear up. The first doctor we saw said that he had one to five years to live and started giving us the worst-case scenario.

Eventually my mother and father decided on a second opinion in which the odds were far greater and eased some fears within the family. About two-and-a-half months ago he had the Da Vinci surgery. He has recovered but not completely. He takes hormone shots on a monthly basis which is very difficult. His personality has changed so much and it's like he has given in, but my father is a fighter and doing his best although this has taken a big toll on my mother. He has no function down there and yes still has to wear diapers some times. He's on several medications and the hardest part is not knowing whether they got it all. Only time will tell and it's so hard to grasp because you always see it on the television and you never think it could happen to you.

The shots he's on make him emotional and in all honesty I have hardly ever seen my dad cry. He's a construction worker and has already gone back to work, he's always doing something to keep his mind off of it. I wish there was some way I could help and when a holiday always comes I ask him what he wants, he says, "I want to be free from cancer." I am grateful though that that he's not suffering and does not have some of the effects I have read about. I try to look at the positive side.
— Amber, Rancho Cucamonga, Calif.

My husband was diagnosed with prostate cancer four years ago. He did all the "right things" regarding yearly PSA tests etc. Nevertheless, here it is ... cancer. He has had a radical prostatectomy, nine months of chemo, followed by hormone therapy. The cancer continues to remain in his system. Of course the ultimate fear of death lingers every day but on a day-to-day basis our lives are strange now. The original surgery ended our sex lives and the hormone therapy delivered the final blow. I am 67 and he is 70. I think for the most part he is in denial. He rarely talks about it and behaves as if sex is a word in the dictionary but no one knows what it means. I continue to try to act normally but inside I am far from normal.
— Anonymous

I have prostate cancer — I was just diagnosed last Friday when the biopsy results came in. Nine of the 12 samples had cancer cells, and my PSA level is 11 or 13 depending on which of the two tests one believes. Today I go in for a CT and next Tuesday for the bone scan. Next Wednesday, my family meets with the doctor to hear what my status is and to discuss the options. To say I'm scared is simply an extreme understatement. The adrenaline keeps pumping into my system every time I begin to think of this issue. What I wonder most is why my regular doctor never discussed getting regular PSA tests. I had no clue until I applied for life insurance and was rejected — PSA too high at 11.33. Only one glimmer of hope so far — the type of cancer appears to be of the slow-growing variety. So far my toughest choice has been what to tell my five daughters — I spoke with two of them last night and survived. Tonight I get to tell my mother who has lost a husband (my father) and one son to brain cancer.
— David, Bellevue, Wash.

My husband had prostate cancer four years ago, just six months into our marriage (the second for each of us). I highly advise you to take the impotency results that the surgeons tout with a grain of salt. My husband was never a man defined by an erection, but it clearly influenced him in a deep way, which surprised both of us. We used injections, Viagra, and now are finally back to natural erections. But we are lucky ... several friends have not had such good results. And it did take just over two years to get back to this point. On a brighter note, he tells me his orgasms are more intense and they last longer. The only other advice I'd give you is this: Make your decision, believe you've made the best decision based on your research and options, and let it go. As the book says, "Dead Men Can't Make Love."
Hope, Alto, Mich.