Silence is the enemy . . .

Anal-cancer survivors see silence as an enemy 

By Nancy Lofholm Denver Post Staff Writer

Cancer survivors (from left) Robin (no last name), Nova Loverro Sprick, and Betsy Liggitt September 5, 2007. (Post special / Ed Kosmicki)

Nova Loverro Sprick was still suffering the nasty tailspin of six weeks of chemotherapy and radiation when she received the upbeat invitation to join a cancer survivors walkathon.

"What color is your cancer?" asked the race organizer, intending to order a T-shirt for the 53-year-old yoga instructor. Pink for breast cancer? Orange for leukemia? Teal for ovarian?

But Sprick's cancer - one of few increasing in incidence - has no color. There is no sisterhood of pink ribbons for anal cancer. No fundraising galas. No widespread research projects. No support meetings. A helpful "You Have Anal Cancer" pamphlet doesn't exist.
Anal cancer garners only brief mentions in the mainstream media and in the current debate about the vaccine for the human papillomavirus (HPV), although the same types of HPV that cause cervical cancer also can trigger anal cancer.

A brief blip of interest in anal cancer occurred when the public learned in 2006 that actress Farrah Fawcett had it and again in May when it recurred. But Fawcett's cancer initially was referred to as "below the colon." The unsavory word "anal" wasn't used.
 

"There is certainly some social stigma with this cancer," said Dr. Sam Whiting, an oncologist at the Fred Hutchinson Cancer Research Center in Seattle.

Anal cancer also is still considered fairly rare, although its numbers are climbing. This cancer, which develops in the short tube that connects the rectum to the outside of the body, strikes less than two of every 100,000 people.

"I had never even heard of this cancer," Sprick said, echoing the surprise of six other Colorado survivors who didn't know the cancer existed until they had it.
Anal cancer is becoming more common because of its tie to HPV and HIV, while some cancers, such as those that afflict the colon and breasts, are dropping, said Dr. Wells Messersmith, director of gastrointestinal
medical oncology at the University of Colorado Cancer Center.
Some baby-boomer women, who may have unknowingly contracted the sexually transmitted HPV decades ago when they came of age in a generation more likely than previous ones to have multiple sex partners, are now seeing it surface in cervical and anal cancers. HPV often accompanies HIV, the virus that causes AIDS, and that is fueling the jump in gay men with anal cancer.

An estimated three of every four Americans between the ages of 15 and 50 have been infected with HPV at some point in their lives, but the majority of those infections don't cause cancer.

Nationwide, cases of anal cancer in women have jumped 78 percent in the past 30 years, and 160 percent in men.

This year, 2,750 women and 1,900 men are expected to be diagnosed with anal cancer in the United States. In Colorado, 35 cases were diagnosed in 1990. That figure nearly doubled in 2005, partly because of an increase in population.

But in Mesa and Garfield counties, at least nine cases have been diagnosed in the past 18 months. Colorado Department of Public Health and Environment statistics show the average number of cases in both counties should be one or two annually.

Health authorities aren't ringing alarm bells. But in two counties where anal cancer is openly discussed because a band of female survivors decided they needed to warn others, there is conjecture that cases will shoot up more than expected.

"It's a cancer just rearing its ugly head," said Betsy Liggitt, a 50-year-old Glenwood Springs dental hygienist who completed treatment this past spring. "I have to accept that I'm on the early end of a cancer that is just now being learned about."

Grand Junction physician Dr. Kathleen Rieves diagnosed three cases in the last year and, in August, sent two more suspected cases to specialists.

"This is becoming more common, and I think there are more undiagnosed cases out there," Rieves said.

The medical community often does not have a complete understanding of anal cancer, which can be disguised by or confused with warts or hemorrhoids. Some physicians do not do rectal exams as part of part of annual physicals. Patients can be squeamish about having an exam of the anus and rectum. And some physicians can be squeamish about doing them.

Many anal cancers are found during colonoscopies. Others are found in biopsies after patients report "hemorrhoids" that won't go away.

Some physicians mistakenly diagnose anal cancer as colorectal cancer. But it is different.
Sometimes tough to recognize

Most anal cancers are actually skin cancers. Because the anus is located partly inside the body and partly out, it is made up of different types of cells, and each type can become cancerous.

If a precancerous lesion on the outside of the anus is caught early, a dermatological surgery can peel away layers of tissue until no more cancerous cells are left.

But most anal cancers aren't found at that stage and must be treated with chemotherapy and radiation.

"It's like someone took a blowtorch to your crotch. It's really bad," Liggitt said.

The lifesaving treatment can leave women with pain and sensitivity in their rectums for life. In some cases, it can shrink the vaginal tissues and make it impossible to have sexual intercourse. It can leave women more susceptible to broken hips. It can cause incontinence and flatulence problems.

Messersmith said anal cancer is one of few cancers that can be treated with chemotherapy and radiation without surgery. But those treatments are so debilitating because they are directed at a sensitive part of the body that still must be used during treatment. Also, the cocktail of drugs used is old- school. He predicts new less toxic, targeted chemotherapy drugs will eventually prove effective.

"It will be the difference between dropping a smart bomb as opposed to a cluster bomb," he said.

If cancer returns after those treatments, it can require further radiation or it can require difficult surgery to remove the anus and rectum and reroute the bowels so that waste can leave the body through a new canal that empties into a colostomy bag.

Pat Griest, a 57-year-old Grand Junction woman, opted to have that surgery because she was frightened of radiation. But she ultimately needed radiation following surgery because some cancer remained. She was hospitalized for three weeks near death with burned intestines.

Messersmith said the good news is that 81 percent of early-stage victims remain disease-free for three years. That drops to about 67 percent after three years.
"We need to improve on that," he said, and pointed out it is difficult to complete research because of the rarity of cases.

The concentrated research on anal cancer and its HIV and HPV ties is so new - about 15 years - that there is no proof yet that the HPV vaccine being promoted to combat cervical cancer will help prevent it or that regular screening will bring numbers down like it does for cervical cancer.

Naomi Jay, one of the pioneering anal-cancer researchers at the University of California at San Francisco, said things could change in another decade when anal Pap smears may be done along with cervical Pap smears. If those tests show dysplasia, further tests can be done to pinpoint HPV or cancers.

Ongoing research at the Hutchinson Center in Seattle has linked anal cancer to smoking. It has a higher correlation than many other cancers.

"Sixty to 70 percent of people who get anal cancer are smokers at the time of diagnosis. We think it may affect the body's ability to get rid of this cancer," said Dr. Janet Daling, a respected researcher at the Fred Hutchinson Cancer Research Center in Seattle.

But the numbers aren't there to draw research money.
"And it's really not that sexy," Jay said of the reluctance to fund research.
The women who agreed to be interviewed for this story say it was initially hard for them to tell people about their cancer. They saw some people recoil. Some victims became isolated with their disease.

Fighting back by speaking out

"They don't want to hear about this cancer," said Robin Farley, a 55-year- old El Jebel woman who recently finished treatment.

She went to a cancer survivors meeting looking for support but attended only once.

"It was all about breasts," she said.

Sprick stood up in a recent public meeting on the HPV vaccine and talked about her cancer. She said it was difficult but that she feels a need to urge young women to be vaccinated against the risk of anal as well as cervical cancer.

Fawcett's publicist, Michael Pingel, said Fawcett would not have revealed what type of cancer she had. She was "outed." But he said that once she finishes treatment for her second bout, "she will do what she can to help get the word out."

Dr. A. William Blackstock, a radiation oncologist and spokesman for the American Society of Cancer Oncologists, said anyone older than 50 should have an annual anal exam and ask for it if it isn't a standard part of a physical.

Liggitt and Sprick said they have heard from their doctors that women in their communities are coming in and asking to be checked.

That gives Sprick and the other survivors some satisfaction. But they feel compelled to do more.

They plan to put together a brochure with tips on how to survive treatment - for instance, to buy baby wipes rather than toilet paper and have Depend undergarments on hand. Do stretching exercises. Be an aggressive advocate for yourself.

Most of all, they say, they will continue to promote awareness. They were healthy yoga practitioners, windsurfers, hikers, skiers, bicyclists. They had few symptoms before they were diagnosed. They have lingering problems related to their treatments, but they are back at their active lives. They can look people in the eyes and say "anal cancer" without flinching. They can laugh about "being the butt of jokes."   

Someday, they say, their cancer may even have a color.

Read more: Anal-cancer survivors see silence as an enemy - The Denver Posthttp://www.denverpost.com/movies/ci_6847553#ixzz1EmiQRVbK

What Farrah Fawcett Can Teach Us About Anal Cancer

By Deborah Kotz

Posted: April 6, 2009

http://health.usnews.com/health-news/blogs/on-women/2009/04/06/what-farrah-fawcett-can-teach-us-about-anal-cancer
As much as I think celebrities should be afforded their privacy—like the rest of us—when they're battling life-threatening diseases, I sometimes blog about their conditions because I see them as teaching moments. Farrah Fawcett is in the news today with reports that she's been hospitalized for complications of anal cancer. She was first diagnosed with anal cancer in 2006. Speculation was running wild that she was "close to dying," but the latest reports say she's suffering from a blood clot that resulted from an "alternative" cancer treatment she had in Germany to fight the cancer's recurrence.
Anal cancer is one of those cancers no one likes to talk about because it's, well, anal cancer. But we really should discuss it as much as, say, cervical cancer. Both are predominately caused by the sexually transmitted human papillomavirus. In fact, a 2004 study of 6,000 anal cancer patients (the majority of whom were women) found that 73 percent of the patients tested positive for the strain HPV-16, one of the strains that the Gardasil vaccine protects against.
What's worrisome is that unlike cervical cancer, which has dropped dramatically since the advent of the Pap smear, anal cancer is on the rise. Incidence rates over the past 30 years have jumped by 78 percent in women and 160 percent in men, probably because more people now have more sexual partners and more people have anal sex (both among heterosexuals and gay men), says Lisa Johnson, a cancer epidemiologist at the Fred Hutchinson Cancer Research Center in Seattle who led the 2004 study.
Having unprotected sex, either anal or vaginally, raises your risk of becoming infected with HPV. Smoking is also associated with a higher risk of anal cancer, according to information I gleaned from the National Cancer Institute website, possibly because it inhibits immune function.
[Here are 12 other reasons to quit smoking.]
While anal cancer is far less common than breast cancer—1 in 640 women will be diagnosed during their lifetime, compared with 1 in 8 with breast cancer—only about half of anal cancers are detected in their earliest stage, when they're most treatable. Partly for this reason, only about 67 percent of people diagnosed with anal cancer survive five or more years.
There are, though, several ways women can protect themselves, says Johnson. Younger women can get the Gardasil vaccine, which is approved for those up to age 27. By blocking the transmission of two common cancer-causing HPV strains, she says, the vaccine presumably protects against anal cancers, throat cancers, and oral cancers that are associated with HPV infections.
[Here are other things to consider with regards to Gardasil vaccination.]
And don't skip those yearly gynecologist visits. As tough as it may seem, be upfront with your doctor if you've ever had unprotected anal sex and find out if there's any extra screening you should have. Anal Pap smears are available, and though they're mostly used for gay men, women can have them too. Be sure you have an HPV test along with your regular Pap smear. If you test positive for a cancer-causing strain and have had anal sex, talk to your doctor about methods for detecting anal abnormalities before they turn cancerous.
[Read about a new HPV test that's coming soon.]
I hope Farrah Fawcett will recover fully from this latest complication. I'm eager to see the documentary she's working on about her treatment experience. The fact that she has documented and shared her fight with cancer suggests that she, too, recognizes the importance of the teaching moment.