The Prostate Cancer Spouse
The diagnosis is often minimized, but shouldn't be. The effects on a relationship can be profound.
When my husband of 42 years was diagnosed last October with prostate cancer, he wasn't worried. Instead, a quick online tour reinforced the comforting cliches: it grows so slowly, you're more likely to "die with it than of it."
Even if his prostate needed to be removed, robots (cool!) could wiggle it out through a couple of paper cuts in his abdomen. Then, a good surgeon would slice out the corroded gland and reconnect the internal plumbing to keep all systems flowing and rising like normal.
Why wouldn't he believe all this? These are the myths that ricochet around the internet's echo chamber, the same banalities repeated word-for-word on doctors' websites, in articles and on social media.
Myths About Prostate Cancer
Too bad it's all lies.
The ugly truth is this: your male partner might not die of prostate cancer right away, but chances are good it will cut down his bodily autonomy and dignity and certainly compromise his sexual capabilities. And then it still might kill him.
If you're committed to a man struck by this vicious, underestimated marauder, you're going to be collateral damage. In an instant, you're caregiver zoned. It's like being friend zoned but messier.
In an instant, you're caregiver zoned. It's like being friend zoned but messier.
And because the prevailing attitude toward prostate cancer is to deny and dismiss, you won't even get much sympathy – at least, not from those who haven't gone through it. Statistically speaking, you could get lucky.
Of the 224,733 men diagnosed annually with prostate cancer, according to the Centers for Disease Control, yours might have a mild or contained version.
His doctor might recommend just letting it hibernate in his belly, maybe to wake up and strike, or maybe not. This circumstance gives friends and family permission to minimize his diagnosis blithely. No casseroles for you!
But as with all illnesses, your results may vary. Many men, including my husband, are struck with vicious cancer that eats its way through their prostates to the adjacent nerves that control sexual function.
If they're unfortunate (not like my husband), especially if they let their guard down and waved aside screenings, cancer might already have invaded their bladder or bones, or both. At last report, 31,636 men die annually of prostate cancer. Sometimes it takes years. Sometimes it takes months.
The prepositions are everything: 31,636 died of it. Not with it. And you, the partner, are collateral damage. So first, you have to rise to caregiving.
The options are ugly: surgeries followed by humiliating recoveries because removing the prostate also removes the mechanisms that enable urinary continence. It might be restored with time and physical therapy.
But doctors sunnily count a slow leak that requires a couple of absorbent pads a day as "continent" – a definition not shared by the rest of us. Nonsurgical options aren't much better. They, too, affect continence. Hormone therapy amounts to chemical castration.
Radiation and chemo, of course, invoke exhaustion and side effects. And usually, incontinence. And in the midst of all this, you won't have the reliable comfort of sex – the one affection you can share with just this person. Because all of this – the disease and its treatments - wipes out your husband's ability to do what you both love to do.
There's no excuse, say, doctors, advocates, and wives of prostate cancer patients, for the prostate cancer industrial complex to take wives for granted and ignore that their relationships with their husbands are irrevocably changed.
Support and Advocacy Groups
Prostate cancer advocacy group Zero Prostate Cancer offers 130 support groups for prostate cancer patients, but "we're just starting to add caregivers of newly diagnosed patients and a few groups are specific to caregivers, said Jeremy Patch, ZERO's Director of Patient Programs and Education.
A common theme is shock and betrayal, says Patch. "I would never tell anyone it's a good cancer. There is this sentiment out there," he said of another of the condescending cliches.
"People look at the five year survival rate, and it looks good on paper, but that's not taking into account the side effects. We hear that people are not prepared. The doctor gives them a brochure" and precious little else.
Neither does the medical profession go out of its way to help patients or caregivers prepare for the arduous and sloppy post-surgical recovery.
It wasn't until my husband was about to check out from his four-day hospital stay that a nurse showed up with a handful of absorbent pads, some institutional brand ointment, and a quick tutorial on how to clip catheter collection bags on and off. (I'm not very good at it.)
It's important for us all to have more frank discussions about sexual health and to have that discussion with our partners.
Thank goodness for "Prostate Cancer Wives – Talk and Support," a Facebook group I found when I searched on a whim. With 1,500 members, the very private group overflows with empathy and practical advice, including a shopping list for post-surgical supplies.
'A Communication Issue'
But even within that militantly protective sphere, the risk of embarrassment is so acute that its administrators refused to be interviewed for this story. After I asked via direct message about their interest in talking with me, I was silently cut from the group, though an admin agreed that I hadn't violated any group rules.
"We have a communication issue," says Brian Keith McNeil, a urologist who volunteers with the American Urological Association. He has a personal stake in the fight: his father died of prostate cancer when McNeil was only fifteen. He said controlling the cancer is the top priority, followed by the return of continence and sexual function and health.
Partners often are peripheral to the first two, especially if their men are reticent to talk about functions usually not discussed in polite society. "It's important for us all to have more frank discussions about sexual health and to have that discussion with our partners and also with our providers. It's vital to be more open and more vulnerable," McNeil said.
Maybe, I suggested to Dr. McNeil that prostate cancer would demand some respect if I took a cue from the breast cancer advocates, who are relentless with their awareness and fundraising campaigns.
Breast cancer is almost precisely as prevalent among women as it is among men. One in eight women will develop breast cancer over their lifetimes. Likewise, one in eight men will develop prostate cancer over their lifetimes.
"Maybe prostate cancer needs a ribbon," I joked. It took him a moment to respond. "It does," he said. It's blue.