Maintaining physical and emotional health during prostate cancer treatment: A patient’s story

Mr. Williams is a successful business owner in his mid-60s, happily married for the second time, with two grown sons from a first marriage. (Note: To maintain his privacy, Mr. Williams’ name and some biographical details have been changed. All medical details are as reported. In keeping with editorial policy, physicians who have cared for Mr. Williams are not named.)

In the summer of 2004, he felt terrific personally and professionally. Then a routine annual exam revealed an elevated PSA level. Mr. Williams consulted with a urologist and underwent further physical exams and testing, including a biopsy — which revealed that he had prostate cancer.

Ever the businessman, Mr. Williams quickly assembled a team of advisors to help him make the best cancer treatment decisions while also taking care of other aspects of his physical and mental health. As Mr. Williams began sorting through his treatment options, he soon realized the likelihood of experiencing adverse side effects as a result of treatment. He was particularly concerned about maintaining his sex life, which had always been healthy and satisfying. But he was also concerned about maintaining his overall physical and mental health. Soon Mr. Williams was managing what he came to think of as a campaign, waged on several fronts simultaneously.

Dealing with the cancer itself was top priority. After consulting with several doctors in two cities, Mr. Williams decided to undergo a combination of hormone therapy and external-beam radiation therapy. In the fall of 2004, he began neoadjuvant hormone therapy with leuprolide (Lupron) and bicalutamide (Casodex), a strategy chosen to starve the prostate tumor of its testosterone fuel and increase the likelihood that external-beam radiation therapy, which began early in 2005, would be even more successful. Mr. Williams continued hormone therapy through the summer of 2005, several months after radiation treatment ended, to further increase the odds of eradicating the cancer.

Early on in the treatment process, Mr. Williams also took steps to ensure other aspects of his health. He found a psychiatrist to help him deal with the emotional impact of cancer, consulted with a dietitian about what changes he should make in his diet, found a physical trainer to develop an exercise regimen, and consulted with a urologist specializing in men’s sexual health to maximize his chances of remaining potent.

Two years later, follow-up tests indicate that Mr. Williams is cancer-free. His cholesterol levels have decreased, probably because of changes in his diet and exercise regimen. And remarkably, Mr. Williams was able to maintain his sex life both during and after treatment — an outcome that he attributes to an investigational protocol that seeks to avert potency problems before they begin. Although the jury is still out about the overall efficacy of such programs (known as penile rehabilitation), Mr. Williams’ story may provide useful pointers for men who are interested in maintaining as much of their sex life as possible.

How did you first react to the diagnosis of prostate cancer?

I had two major reactions. The first was shock: How could this be happening to me, when I felt absolutely fabulous? I was at a great point in my life in terms of quality of life, career, and family. And all of a sudden I was thinking, “I may not live to see my grandchildren grow up. I may not live to see all of my grandchildren born.” The other reaction was real anger and distress.

Who was the anger directed at?

No one. I was just angry at the situation, at fate.

So what did you do?

I’m highly organized. I started gathering information and talking to people. My wife and I have good friends who are doctors. We sought their advice. And I borrowed a couple of books about prostate cancer from friends who had had this cancer themselves, and sought their advice.

I quickly concluded that there were lots of treatment choices, but I wasn’t sure what I should do. I was very concerned about side effects, particularly incontinence and impotence. Friends warned me, “Don’t believe the statistics you hear. I don’t know anybody who gets erections, and I know several men who have a problem with incontinence.” That worried me.

But, of course, I was concerned about surviving. So I aggressively pursued all treatment options and talked with surgeons, radiologists, and medical oncologists. My doctors agreed that I really wasn’t a candidate for surgery because it was possible the cancer had already escaped into the seminal vesicles or was abutting them. So after reviewing the options, I concluded that, in my case, a combination of hormone therapy and external-beam radiation therapy had a higher likelihood of success than surgery.

Why did you see a psychiatrist?

I wanted to learn how to deal with this terrible problem and with my anger, how to deal with the pain and suffering of being a cancer patient. I have occasionally seen a therapist in my life to deal with issues such as my divorce, and then a merged family, and therapy had been helpful in both instances — particularly if you go in with a focus of “What am I trying to achieve? How am I going to deal with a problem?”

And in this case, the problem was prostate cancer. How do you deal with the huge psychological impact of a disease that may kill you? My doctors were all caring, but none of them had time to sit and talk with me for an hour about the emotional impact of cancer — and that really isn’t their specialty anyway.

The psychiatrist started off the first session by asking, “Is there anything good that could come out of this experience?”

And I thought for a moment, and I said, “Well, you know, I have a pretty good balance in life. I always have. But this makes me focus on aspects of life other than work — and the need to keep everything in balance.”

The psychiatrist was also helpful in getting me to focus on how to deal with specifics. I couldn’t change the diagnosis. But he helped me to think about how I could deal with pieces of the problem and make this as positive an experience as possible. He also referred me to an expert in men’s sexual health. [For more information, see “Programs in men’s sexual health” at the conclusion of Mr. Williams’ interview.]

What did the expert in men’s sexual health recommend?

He asked if I had had a testosterone test done. It’s a simple blood test. And he said it was always good to have a baseline testosterone level, where you have had normal sexual relations.

My testosterone level had already dropped to 30 ng/dl during treatment. (Normal testosterone levels range from 300 to 1,000 ng/dl.)  But when I reviewed my medical records, going back many years, I could find no record of a testosterone level from any of my blood tests.

What else did you discuss?

We talked about my sex life at the time. I’ve always had frequent sexual relations. And I’ve never had problems with erections or ejaculations or orgasms.

My oncologist had warned me that I would lose my interest in sex once I began hormone therapy, and that it would become difficult to have an erection or maintain one. The expert in men’s sexual health told me that Lupron would eliminate the erection, but that I needed to protect the penile tissue for future erections.

He recommended that I have erections three times a week. He said, “I don’t care how you do it. It’s not important to have an orgasm. But you must have an erection three times a week for at least 15 to 20 minutes at a time.”

How did you do that, while you were on hormone therapy?

The doctor said I could try Cialis or Levitra, but the drug to use regularly was Viagra,† because that’s the drug he had data on. He recommended that I take 25 mg of Viagra every night, except for those nights when I wanted to have sexual activity, when I should take 100 mg. So I took 100 mg three times a week.

Was that enough to enable you to have erections, when there was sexual stimulation?

Yes. Actually for some weeks, I kept a record. The doctor defined an erection, on a scale of zero to 10, as at least a “six,” which he defined as the minimal level to maintain penetration. I was able to do that, while taking 100 mg, even during the period when I was receiving hormone therapy. I was able to maintain erections for 15 to 30 minutes and have intercourse.

He said that if I couldn’t achieve erections at a “six” level, I should consider penile injections. I never had to. But he made it clear that it was important to keep having erections during treatment so that my penis would remain healthy.

Has the men’s sexual health expert asked you to fill out any quality-of-life or symptom questionnaires related to erectile function, when you see him?

No, we simply talk: “How are you doing, what are you taking? How often are you having erections? Intercourse?” He has suggested that I try to have intercourse a few times without Viagra. But more recently he’s said, “You know, I don’t think there’s any reason to go off it.”

He said he’s finding that some people need a higher dose of Viagra as time goes on in order to get a quality erection. But the quality of an erection is also affected, he says, by stress, tiredness, aging, and alcohol. So those are other factors that tie into it.

Radiation therapy is also a factor.

Yes, that’s true. It makes many people tired. And my understanding is that any tissue damage in the prostate area caused by radiation would peak months after the end of therapy.

But I benefited from some advice, given by another cancer patient, to go for radiation therapy appointments at the end of the day, because then you’re not tired during the day. I found that if I asked for the last appointment I could get, the facility wasn’t crowded. And then I could go home, take a nap, and deal with the tiredness that sets in. But I was not tired the next day when I would start my normal work schedule.

What dietary and exercise changes did you make?

First of all, I cut out red meat, butter, cheese, and eggs, and instead ate fish, seafood, chicken, turkey, and almonds and other nuts. One of my oncologists recommended no more than one serving of beef, lamb, or pork — or two portions of veal — a month. The rest of the month, I ate only fish or white-meat poultry. And I’ve continued this diet.

It’s had an unexpected benefit. Although I never had a cholesterol problem, my primary care physician said he’d never seen anyone’s cholesterol fall so far so fast as mine did, after I went off beef, saturated fats, and cheese. [See “It takes more than a pill,” below.]

And I still follow the diet. Before prostate cancer, my dinner of choice at a restaurant would always be beef. Now it is generally fish or chicken or turkey or duck, avoiding the skin, avoiding dark meat as much as possible. But once a month my sons and I have a “steak out.” We go to a great steak house and have beef — and we treat it like a celebratory event. I joke that this is part of my medical treatment! But we only do it once a month.

I also concluded, after reading some books and talking with doctors, that it was important to maintain an exercise regimen during treatment. I found a fitness trainer who’s a physical therapist, who was able to devise an exercise program, two or three times a week, to help me maintain as much muscle mass as possible while I was undergoing treatment. And I think this also helped me counteract the tiredness and fatigue that radiation therapy normally causes.

So I was very rigorous in pursuing diet, exercise, psychiatry, sexual health, the whole works, everything I could possibly do to maintain my health during treatment. Meanwhile I was keeping all the different doctors in touch with each other by e-mail and notes and telephone and whatever.

Were you working full time at the time?

Yes, but I am fortunate in that I can manage my schedule more than a lot of other business people.

What other side effects, besides the sexual ones, did hormone therapy cause?

Both Lupron and Casodex caused hot flashes, which bothered me a great deal. I learned not to wear warm wool clothes and sweaters, because I never knew when a hot flash would hit me. But the hot flashes ended about a month or two after my last hormone treatment. I certainly became more sympathetic to women’s issues with hot flashes!

What did the men’s sexual health expert recommend after you stopped hormone and radiation therapy?

He advised that I continue on the regimen of 25 mg of Viagra, every single night. Occasionally I won’t take a pill. But he said, “You know, I don’t see any reason why you should go off it. You want to maintain sexual health.”

Have you had your testosterone tested regularly?

Yes, and it’s been rising rather steadily. It’s now at about 504 ng/dl.

Do you feel the difference in any way?

Absolutely. During hormone therapy, I had no interest in sex. I had to force myself to be interested. But once I stopped hormone treatment, those desires returned.

Do you still take 100 mg of Viagra to achieve an erection?

No. I now find that I will often get an erection at night, even on 25 mg of Viagra, and we can sometimes have intercourse at that level. More often, though, I will take 50 mg or sometimes 75 mg of Viagra ahead of time if I know we’re going to have intercourse.

Did you recover other aspects of your sexual health, besides erections?

After I finished hormone therapy, I recovered the ability to have an orgasm, but not ejaculation. There was no significant amount of fluid coming out, just a little dribble of something, but not the usual seminal liquid. The men’s sexual health doctor explained that ejaculation is a physical act, while orgasm is more mental and psychological. They are not necessarily connected or dependent on one another.

But overall my sex life is great.

Was your wife supportive during this whole process?

I’m very lucky. My wife has been a thousand percent supportive. If there was any hint that I wanted to have sexual relations, her attitude was positive. She and I have always had a wonderful sexual relationship throughout our marriage, and she’s been completely supportive of every aspect of this process. She also went to many of the doctors’ appointments and tests with me, although not to consultations with the men’s sexual health specialist.

Viagra is expensive. Did you have any reimbursement issues?

The per-pill cost is high, and the amount my health plan was willing to reimburse was minimal. My plan pays for just a few pills per month, and there is a co-payment. The men’s sexual health expert advised that I buy 100-mg pills, which are not that much more expensive than 25-mg pills, and cut them into quarters with a pill slicer. The pills are not scored, and they’re hard to cut, but it’s worth the effort. And frankly the money issue wasn’t of concern to me, since it was the largest medical expense that I paid! So every once in a while I get a bill for $300 from the pharmacy because I’m buying 30 pills. And to me, that’s worth it. It works out to less than the cost of a movie, per night.

My health plan paid for all other costs of treatment, like doctors’ visits and the radiation treatment, with only a small co-pay required.

Have you noticed any change in your sexual activity, as time has gone on? There’s evidence that sexual activity can decrease, the longer the time lapse after radiation treatment.

I have not yet noticed any reduction in interest or ability to maintain an erection for half an hour and have meaningful intercourse, culminating about a third of the time in orgasms for me. My sexual life, as far as I’m concerned, rates an A. I’m very happy with it.

Do you have advice for other men in this situation?

I think that my success in maintaining my sex life is the result of doing multiple things at once, in terms of diet, exercise, psychiatry, and sexual health. And, importantly, I managed the process and implemented the agreed-upon plan of action.

My approach was highly regimented, because it was like running a business campaign. That’s the way I looked at it. You’ve got to carry out your strategic plan.

You know, there’s nothing like cancer to focus the mind. So focus your mind and get working on it, and you’ll become more resourceful than you thought possible.

In the past, as problems in life arose, such as our having trouble selling a house, or a problem with household help, or losing money in the stock market, I developed a stock answer that helped me put things in perspective: “Well, it’s not cancer.” That helped me to remember that there are problems to take seriously, and problems that should be treated as part of the normal ups and downs, ebbs and flows, of life. I have used this artifice for years, to help keep the usual problems of life from getting out of hand.

So when cancer did come, I then said, “Well, this is cancer. So this is a problem I really have to pay attention to!” I think avoiding unnecessary attention to normal problems allowed me to deal proactively with a real one when it arose.

It is important to point out that the strategies Mr. Williams used to maintain his potency may not work for every man. Harvard editors therefore asked an expert in men’s sexual health who did not treat Mr. Williams to share what he tells patients about what to expect after prostate cancer treatment. See “Another perspective, from Dr. Abraham Morgentaler,” below.

Originally published July 1, 2007; last reviewed April 22, 2011.