Less than two weeks after Farah Fawcett died, JD Francis learned he had the same disease that killed her.
Doctors diagnosed the 47-year-old with anal cancer last summer. The illness had progressed to Stage III cancer, Francis says, but statistics gave him a 60–70 percent chance of survival. This was somewhat reassuring. The formidable course of treatment was not.
Weeks of radiation and chemotherapy would physically wreck Francis. As a broad, muscular man and CEO of a successful company, he seems accustomed to control. Treatment would take that away. But what was the alternative? Death, quite possibly.
Stout doses of chemotherapy and radiation produced oozing second-degree burns throughout the groin area, including his penis and scrotum. He wore adult diapers to catch draining bowels, had no appetite, and experienced uncharacteristic emotional outbursts, like crying over Little House on the Prairie.
His husband, whom he married in Holland 11 years ago, was equally helpless as he watched Francis suffer.
Had Francis done something to enrage the gods? Bad luck? Poor karma?
No. Francis had sex. Sex with someone who apparently carried the human papilloma virus, or HPV. He’s not sure who it was.
At least half of sexually active Americans—and according to some experts, almost 90 percent of gay men—have HPV at some time in their lives. The virus is mostly innocuous, rarely causing symptoms, as the body tends to fight HPV on its own. Only a sliver of those with HPV develop anal cancer, but the number is growing each year in men, both gay and straight—as are occurrences of other HPV-related cancers.
Gay and bisexual men are especially vulnerable. They are 17 times more likely to develop anal cancer than heterosexual men, according to the U.S. Centers for Disease Control and Prevention.
While anal sex is only one risk factor for anal cancer, and not the sole cause, this sexual practice could make gay men more susceptible to the disease. Anal intercourse does increase the risk of anal cancer in both men and women, particularly in those younger than 30, according to the American Cancer Society.
In the life of cancer research, the link to HPV in men is relatively new, and therefore many unknowns remain. But researchers are certain that having a large number of sexual partners increases the risk for contracting HPV.
In the media, the dangers of HPV are usually linked to cervical cancer, which about 12,000 American women develop each year. But those numbers are dropping as more females have Pap smears to pinpoint and treat pre-cancerous cells before they flourish into full-blown cancer.
What’s rarely discussed is how similar strains of HPV are showing up in—and killing—men.
In fact, the number of HPV-related cancers in men is very close to the number of cases of cervical cancer in American women, according to recent studies. HPV likely contributes to 25 percent of mouth, 35 percent of throat, and 85 percent of anal cancers, according to reports recently released by the CDC.
There are more than 100 strains of HPV, and the majority are harmless. The strain of greatest concern is HPV-16, which is found in most anal and cervical cancers. HPV-18 is also dangerous but less common. Genital warts are caused by other HPV strains.
“The strain of HPV that is not visible is the more aggressive strain,” says Dr. Shannon Schrader, who treats a number of HIV-positive patients at The Schrader Clinic in Houston. “That strain is growing ‘inward’ into the bloodstream, and the less aggressive strain is growing ‘outward’ in the form of warts. Anything that has a blood supply is going to grow faster and be more aggressive.”
The vast majority of HPV-related
cancers are squamous cell carcinoma, which is skin cancer. HPV basically breaks down proteins that suppress
tumors in normal cells. (For more on
how HPV contributes to cancer, see
sidebar.) Still, some people with anal cancer do not have any known risk factors, and the causes of their cancer are unknown.
Outside of anal sex, Francis had nothing else on his list of risk factors. No smoking. No HIV. No compromised immunity. He now counts three friends within a relatively close circle who have anal cancer.
“This is an epidemic,” Francis says.
Thankfully, anal cancer is a “very curable cancer if caught early,” says Dr. Cathy Eng, an associate professor in the department of gastrointestinal medical oncology at The University of Texas M.D. Anderson Cancer Center.
HPV is the most common sexually transmitted disease and spreads through the skin and/or mucous membranes. A condom helps prevent infection, but does not completely protect against HPV because it doesn’t prevent skin-to-skin contact.
Recent hype over HPV has been focused on the two vaccines that prevent the most dangerous HPV strains. Gardasil and Cervarix protect against HPV, and both had been approved by the U.S. government—but, until last fall, only for females ages 11 to 26 to prevent cervical cancer. Gardasil also prevents the HPV strains that cause genital warts.
In October, the U.S. Advisory Committee on Immunization Practices approved Gardasil for males of the same age, but only “to reduce the likelihood of acquiring genital warts” because little research exists to prove it prevents HPV-related cancers in males. While the ACIP “recommends” the vaccine for females, it only says that it “may be given to males.”
Merck & Co., the maker of Gardasil, followed up in February with results of an in-house study that found its vaccine was 77.5 percent effective in warding off precancerous anal lesions caused by certain HPV strains in 16- to 26-year-old men who have sex with men.
This is promising to those on the frontlines of treatment, but many will not be satisfied until the U.S. government recommends the vaccines for males, as they do for females. However, this recent activity shows that the treatment of HPV-related cancers in males is finally getting the attention it deserves.
“The virus is a nasty game,” says Francis. “My suspicion is that [HPV-related cancers] are more prevalent than people think.”
Late in 2008, Francis developed what he thought was hemorrhoids, which has symptoms very similar to anal cancer. It was irritating, but not alarming. When Francis’ symptoms continued into the following year, he had a PET scan that turned up early Stage-III anal cancer. Francis said the cancer had not metastasized like Farah Fawcett’s had. It had only spread to a nearby lymph node.
“Of course, I had never heard of anal cancer,” he says. Francis went from knowing little about the disease to researching its every idiosyncrasy. He spouts off statistics and facts like multiplication tables. And why shouldn’t he? This information may predict his fate.
Francis has used the disease as a catalyst to inform others about preventative measures and screening for anal cancer. After all, anal cancer isn’t something people normally discuss with even their closest friends, much less a physician who could possibly test for it.
“Many doctors are uncomfortable talking about anal sex—I don’t care if the patient is heterosexual, gay, married, or unmarried,” Schrader says. “I don’t think doctors are very comfortable discussing sexuality, much less, and heaven forbid, anal sex in same-sex partners.”
Precursors for anal cancer can be detected with an anal Pap smear. Not unlike a vaginal Pap smear, the “tush smear” is a collection of cells in the anus and rectum screened for any cellular changes that could lead to anal cancer.
Still, anal Pap smears are rarely a part of normal screening procedures.
“For those of us who treat HIV, I think we have always been aware of this,” Schrader says, “but we have not always been aggressively screening. The anal Pap smear is now something that is highly recommended, and I think it will be a standard of care for anyone who is diagnosed with HIV.”
However, women make up the majority of those with anal cancer. And most are middle-aged, which makes sense because it takes years for cancer to develop.
Last year, 5,290 new cases of anal cancer were reported, and 3,190 cases were in women, the American Cancer Society estimates. Last year, 710 people died of anal cancer, and 450 were women.
One was Farah Fawcett. She lifted the veil on this disease.
“This is a cancer that people tend not to want to discuss, because it’s a very private subject matter,” Eng says. “And a lot of people associate anal canal cancer specifically with the homosexual patient population, and that’s not necessarily the case. I don’t think a patient should be stigmatized just for this diagnosis.”
Anal cancer has been on the rise for the last several years, and while more women are victims, the disease is increasing more rapidly in males than in females. In the last 30 years, cases of anal cancer in males have increased 2.4 percent, compared to a 1.9 increase in women, according to the National Cancer Institute’s SEER (Surveillance Epidemiology and End Results). The report cites these findings as significant and “beyond chance.”
But why?
Eng said an increased lifespan in HIV-positive individuals could contribute to the rise in anal cancer for two reasons: those with HIV are living longer, giving the disease time to develop, and HIV-positive individuals have a weakened immune system, so their bodies can’t ward off HPV as efficiently.
Because Francis had very little risk of anal cancer, the diagnosis was quite shocking. Even more shocking were the
effects of the treatment that followed.
“The last chemo wrecked me,” Francis wrote in a support forum at rare-cancer.org about two weeks after his treatment ended. “You will need to be prepared for pain. It will become a familiar friend.”
Last fall, he went through about seven weeks of radiation and chemotherapy, which was pumped into his system through a port surgically inserted into the right side of his chest. The pain was almost intolerable, despite double doses of Oxycontin twice a day.
He wore track shorts so the material wouldn’t stick to his seeping burns, and once, when he had to attend a business meeting, the burns leaked fluid through his jeans and Francis had to excuse himself.
The second round of chemotherapy brought down this confident, husky man.
“It’s like ground glass is in your mouth all of the time. I had no appetite,” he says, sitting outside of his Montrose home drinking coffee—a daily ritual for which he had no hankering during treatment.
Francis also lost about 10 percent of his body weight. All of the muscle and bulk he had worked for at the gym turned to mush and then evaporated. He wore diapers and lost the ability to ejaculate. So many things that defined him as a man were gone.
And then there was that aversion to wine and coffee—two of his favorite things before treatment began.
Seeing an end in sight, Francis trudged through treatment. It would take weeks, but it all would end.
And he felt the tumor shrinking.
“I was extremely fatalistic. I knew the date when it would all stop,” he says. It stopped last October.
“The main thing that kept me going,” he wrote in the cancer-support forum, “was to understand that it would all be over at some point. And it is.”
Recent tests showed that Francis is now in remission.
While the growing number of HPV-related cancers in men, and the rate at which they spread, is alarming, the upside is that such cancers tend to quickly and positively respond to treatment. The reason for this isn’t completely understood, but HPV-related cancers tend to be more homogenous, and therefore respond well to treatment, according to Dr. Erich Sturgis, Associate Professor in the departments of Head and Neck Surgery and Epidemiology at M.D. Anderson.
“When you attack [HPV-related cancer], it doesn’t have extra mechanisms to escape the treatment,” Sturgis says. “It’s really quite dramatic. HPV-related cancers present with higher-stage disease, yet their prognosis is better. They tend to spread quickly, but they respond better to treatment.”
Unlike some cancers associated with HPV, anal cancer normally does not require surgery—only chemotherapy and radiation.
Although treatment is complete, Francis must still be regularly screened for the disease.
“The thing that bugs me is that this is apparently preventable through ‘tush smears’ and the vaccine,” he says.
The best that Francis can do now is encourage the gay community to be screened for anal cancer and support others undergoing treatment for the disease, who often fear the worst.
But life has mostly returned to normal for Francis. These days, coffee and wine never tasted so good.
Leigh Bell is a frequent contributor to OutSmart magazine.
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