Nov. 20--It affects the part of the body no one wants to discuss and remains one of the most stigmatized of diseases: anal cancer.
Saying the word "breast" in public used to be such a taboo it was groundbreaking when former first lady Betty Ford openly discussed her cancer diagnosis in the 1970s. At one point, testicular and colorectal cancers shared a similar social shame.
The only celebrity to publicly disclose her anal cancer was actress Farrah Fawcett, who died of the disease in 2009 at age 62 about three years after being diagnosed.
"It's the last-talked-about cancer," said Richard Goldman of San Francisco, who was diagnosed with anal cancer almost 24 years ago. "It's that word no one wants to say."
But there's an uplifting story about research centered in the Bay Area that offers the hope of preventing -- and even eradicating -- anal cancer in the near future.
Anal cancer is relatively rare. More than 7,000 people will be diagnosed with the disease this year in the United States and about 880 are expected to die from it, according to estimates from the National Cancer Institute.
While everybody is essentially at risk, certain populations are at much greater risk of getting anal cancer.
Most anal cancers -- more than 90 percent -- appear to be caused by the human papilloma virus, or HPV, which is the same virus that causes cervical and several other types of cancer. HPV, which is spread during vaginal intercourse, anal intercourse and oral sex, affects about 80 percent of people who are sexually active, but only a fraction of them will develop anal cancer.
While having HPV is a risk factor, another key risk factor is having a compromised immune system like people who have been diagnosed with HIV or AIDS.
In the general population, the disease strikes more women than men: 2 women per 100,000 will be diagnosed compared with 1.5 men per 100,000. But in HIV-infected men, the risk is much greater: About 130 men who have sex with men per 100,000 with HIV will get anal cancer, according to UCSF statistics.
Dr. Joel Palefsky, an infectious disease expert at UCSF, saw the connection between anal cancer, HPV and HIV when he founded the Anal Neoplasia Clinic at UCSF's Helen Diller Family Comprehensive Cancer Center, the world's first clinic devoted to researching, screening and preventing the disease.
Palefsky is also the president of the International Anal Neoplasia Society, which will hold its first international conference this weekend in San Francisco. Neoplasia means growth, so the name of the group encompasses not just cancer but all the changes that could be a precursor to the disease.
"Unlike almost every other cancer, we believe anal cancer is preventable," Palefsky said.
His confidence rests with the HPV vaccines, which he thinks will eventually wipe out cancers not only of the cervix, but also the anus, vulva and vagina. Doctors encourage preteen girls and boys to get the vaccine.
"If everybody who could get vaccinated did get vaccinated, cervical, anal and every other HPV-related cancer would disappear," he said.
Screening like Pap smear
For those who have already been exposed to HPV, Palefsky advocates anal screening on the same lines as the Pap smear, which has been used to detect cancer or precancerous changes in the cervical canal and greatly reduce the incidence of cervical cancer.
As part of a projected $89 million grant from the National Cancer Institute, Palefsky will be the lead investigator for a national study to screen about 17,000 people for high-grade squamous intraepithelial lesions, the abnormal cellular changes that put someone at high risk of developing anal cancer.
Palefsky and his fellow researchers at 15 sites nationwide plan to identify 5,000 people with that precancerous condition and randomize them into two groups: one group that will not be treated but closely observed, and another group that will receive treatment with the hopes of preventing cancer. Recruitment for the trial will begin in April.
Screening can be done in a doctor's office and involves inserting a cotton-tipped swab into the anus, swiping for cells and looking at those cells under a microscope for high-grade lesions. For more intensive screening, doctors perform a high-resolution anoscopy, which involves using a magnifying scope to examine the anal canal for abnormal tissue.
Palefsky has long been treating precancerous lesions with what he calls "many different forms of torture."
The most common pre-cancer treatment is infrared coagulation, which uses infrared light to zap the tissue and wipe out the premalignant cells. "We basically stick a red-hot poker up somebody's butt," he said.
Other treatments include putting a topical liquid called trichloroacetic acid or a cream on the lesions, none of which Palefsky would describe as remotely comfortable.
Patients who are in the "control" arm of the study -- those who are closely observed but not immediately treated -- will receive more care than they would otherwise because they probably would never have been screened in the first place, Palefsky said.
"We don't even know if what we're doing in the treatment arm protects people," he said. "It may be possible, at end of the day, that we're not reducing cancer."
But Palefsky hopes that's not the case. And so does Justine Almada, director of the HPV and Anal Cancer Foundation.
A mother's death
Almada, along with her siblings Tristan and Camille, established the foundation in 2010 shortly after the death of their 53-year-old mother from anal cancer. They were frustrated by the lack of resources for people with this form of cancer as well as the stigma associated with the disease.
"We're very excited about the study as a potential route to finding anal cancer in its earliest stages and saving lives," Almada said.
She said she hopes anal Pap smears will become as routine as cervical Pap smears are for women.
Lynn Williams of Los Gatos was not an obvious candidate for anal cancer. Williams, who was diagnosed 10 years ago at age 57, did not even test positive for HPV.
The cancer was detected after Williams discovered the presence of a lump she thought was possibly a hemorrhoid. She was treated with chemotherapy and radiation and continues to be cancer free.
She said the treatments were painful and she continues to have side effects she describes as a sense of "urgency" when she has to go to the bathroom.
Williams said she decided to endure the "blushing" about going public with the condition because she wants to show that the disease could affect anyone.
"It's a difficult treatment, but it's worth it because there you are in the end, celebrating life," she said.
Long-term anal cancer survivor Richard Goldman was diagnosed with HPV and HIV before he learned he had anal cancer at 39. He said he had rectal pain and discharge, but thought it was hemorrhoids. "I knew my immune system was damaged, but I didn't know much about anal cancer," he said.
Goldman, a gay man now 64, described his treatment as "brutal" and advocates screening for anyone who is sexually active.
"Get your doctor to do a 'tush Pap' on you," he said. "It's one of those things you won't know until you have symptoms."
Victoria Colliver is a San Francisco Chronicle staff writer. E-mail: firstname.lastname@example.org Twitter: @vcolliver
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