Family Perspectives: “Prostrated”

My mother recently published a piece on the NCCN website (National Comprehensive Cancer Center)

By Beverly Green

The Big “CA”

That day I opened my husband’s mail – something I had never done before. The return address was from the urology department at a local hospital, and I knew the contents were the results of his annual prostate test.

“CA” leaped from the page. It could not be. How could I be reading that my husband had prostate cancer? With test results in hand, including something called a Gleason score, I spent the next few hours at the computer trying to learn what I hoped was not true: that he did indeed have prostate cancer and that the Gleason score was high — not a good sign.

The challenge began in determining the best treatment. That was the beginning of a long education and a process which I labeled “Dueling Doctors.” The surgeons said “operate”; the radiologists said “radiate.” IMRT, IRT: the letters sounded more like stops on the New York subway than anything medical. Each choice had pros and cons of its own. A decision had to be made.

I also read reports that there was no definitive treatment. There was research that said that doing nothing at all if the patient was in his 60s was an option. The “wait and pray” approach. There were friendly reassurances:  “but you caught it early” and “no one dies from prostate cancer.” That was heartening until I read the obituary of a movie star who had died of prostate cancer.

After weighing the pros and cons of surgery and radiation treatment, my husband decided on radiation treatment followed by a 2-year series of injections to halt the production of testosterone because testosterone is a breeding ground for cancer cells.

Cancer Happens to the Spouse, Too

It is a tense and confusing time for both patient and partner. Although it was his cancer and his body, the treatment and its results (one such result is usually a deep depression) became a very real part of my life.  A prostate cancer diagnosis brings with it both emotional and physical changes, and both are difficult for most men — and their partners — to handle.

Our job as the partner, the caregiver, the one without the cancer, is to support and comfort, stand back and accommodate, help and accept. But sometimes we are left uninformed about how these changes will affect our partner, us, and our emotional and physical life together. I quickly realized that I had questions, concerns, and needs that I could not easily share because there was no one to share them with. Although I found support groups for men with prostate cancer, I was not able to find any such groups for their partners.

I will try to shed some light on what these changes may be — for your partner, for you, and for your life together. There was no one to do this for me.

First, some advice.

Find the hospital nearest you that specializes in treating prostate cancer. This is not a time for your local hospital or family doctor. Get an opinion from at least two specialists (usually one surgeon and one radiation oncologist) so you can discuss the options for different treatments.

Go with your partner to the visits, even if you have to insist. Ask questions. Write down the answers. Make sure you are satisfied that your concerns have been addressed. If the doctor does not respect your need for information, find another doctor.

Most of all, become familiar with the emotional and physical changes that will affect you, your partner, and your relationship.

Cancer Often Changes Things…

We have all heard about testosterone. It is the stuff that makes men, men. The injections given as part of my husband’s treatment halt production of testosterone, and the effects vary. There can be body changes, which are somewhat akin to what women go through during menopause: muscles soften, breasts enlarge, and waistlines expand. One of the more difficult and least talked about changes is that there will an absence of sexual urges and ability. Or as the doctor said to my husband, “You won’t even think about sex for at least 2 years and maybe more.”

Needless to say, this is emotionally charged and relationship-changing information. I remember hearing those words and thinking, well, sex isn’t all about intercourse anyway. But what the doctor did not mention was that with the lack of ability comes lack of interest in anything remotely sexual. True, we could kiss and cuddle, but something happens to the intensity when both of you know there is no chance that it will lead to anything else. So the kisses became “friendly” and the cuddling more like comfort hugs. For the next few years the relationship settled into a friendship much like that of college roommates.

Despite the fact that I was glad that there is treatment for prostate cancer, and that it’s one of the more “curable” or at least manageable cancers, it can be a lonely few years. It is a hard subject to talk to friends about, and often difficult to discuss with your partner. I felt selfish for thinking about my own needs when we were both going through the trauma of dealing with cancer. Both you and your partner will need to find a way to navigate through these changes together; we still are.

But there is a bright side. With early and proper treatment, you have a partner who will be cancer-free. It can also be an opportunity to explore other aspects of your relationship, and a time to look forward to rekindling the romance you have missed.

In our case, we have become good friends who have been there to support each other through this scary time.  There is a tacit understanding between us that our relationship may never be the same, but as I look across the bed, I am glad he is cancer-free and there next to me.

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One Response to Family Perspectives: “Prostrated”

  1. Karen J says:

    Thanks for this frank discussion of sexual life post diagnosis/during treatment. So important to say things things outloud! You are brave!

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