For nearly two decades, just a passing mention of Erin Sullivan-Wagner’s cancer was enough to ‘quiet a room.’
At the end of 2007, the Iowa mother-of-four had noticed specks of blood dotting her toilet paper.
At first, the then 48-year-old assumed she was one of the one-in-20 Americans suffering from hemorrhoids, which most often plague middle-aged and post-menopausal women.
But over the course of a month, the blood became more frequent. And by December, she noticed it seeping through the paper and into the bowl.
Sullivan-Wagner, now 66, told the Daily Mail: ‘I knew it wasn’t just a hemorrhoid.’
Following a battery of tests including a colonoscopy, CT scan and MRI, Sullivan-Wagner was diagnosed with stage one anal cancer in January 2008, less than two years after the disease struck Charlie’s Angels star Farrah Fawcett.
More than nine in 10 cases of anal cancer are caused by the sexually transmitted infection human papillomavirus (HPV), which can affect anyone, regardless of gender. About 40 percent of Americans currently have an HPV infection.
At the time Sullivan-Wagner and Fawcett were diagnosed, anal cancer was largely seen as a disease affecting only gay men – with research estimating that men who have sex with men are 20 times more likely to be diagnosed with the disease – and talking about the ‘taboo’ cancer was clouded with stigma.
Erin Sullivan-Wagner, 66, (right) was diagnosed with anal cancer in 2008 when she was 48 years old. She is pictured with her two daughters
American actress Farrah Fawcett – a 1970s TV icon best known for Charlie’s Angels – revealed her anal cancer diagnosis in 2006. Fawcett died in 2009, aged 62, after the cancer spread. (pictured with her long-term partner, actor Ryan O’Neal)
Sullivan-Wagner recalled her colorectal surgeon offhandedly saying, ‘I used to only see this in gay men. Now I see it in women your age.’
‘I really couldn’t get beyond those words,’ she told the Daily Mail.
‘All I could think about was, how [are we] going to talk to one another about this?’
Sullivan-Wagner said that once diagnosed, it felt as if her ‘voice’ was taken away, and she had trouble advocating for herself.
Her surgeon was largely correct in his assessment. Anal cancer is shifting away from the LGBTQ+ community and rising fastest among American women over 50 years old.
Each year, anal cancer affects about 10,000 Americans, about 70 percent of whom are women. It kills just under 2,200, with an even split between men and women.
The overall risk of being diagnosed with the disease is about one in 500, according to the American Cancer Society, and it accounts for just 0.5 percent of all new cancer cases.
Anal cancer in the US had seen an average yearly increase of three percent from 2001 to 2015. And federal data suggests there has been a 46 percent surge between 2005 and 2018, largely among older women.
The cause of 90 percent of cases is HPV, a group of more than 200 viruses which have affected nearly everyone at one point and are currently lurking among 40 percent of Americans.
Of those, about 30 strains affect the genitals, including the vagina, cervix, penis, scrotum, rectum and anus.
HPV types 16 and 18 are most associated with anal cancer. The virus produces proteins called E6 and E7, which disrupt normal cell cycles and lead to the formation of precancerous lesions, called anal dysplasia.
Sullivan-Wagner is pictured above with her husband, Steve, and their blended family in the early 2000s. She has two daughters and he has two sons
Sullivan-Wagner told the Daily Mail after her anal cancer diagnosis, her children (pictured above with her and Steve) would ask if they could use another word rather than ‘anal.’ She remember thinking they felt shame around her disease
Dr Amar Rewari, chief of radiation oncology at Luminis Health and adjunct assistant professor at Johns Hopkins University, told the Daily Mail: ‘HPV can remain dormant in the anal canal for years. Over time, the virus disrupts the cell’s natural defenses, essentially switching off key “tumor suppressor” genes.
‘That gradual accumulation of DNA damage can eventually turn precancerous changes into cancer, which is why someone can be infected in their 20s and not develop anal cancer until much later in life.’
In Sullivan-Wagner’s case, doctors estimate the HPV that caused her cancer had been lying dormant in her body for more than 20 years.
HPV also causes cervical, vaginal, penile, vulvar and oropharyngeal (throat, tongue and cheek) cancers. While the HPV vaccine can prevent about 90 percent of infections, the shot wasn’t rolled out until 2006 and was only recommended for girls and women aged nine to 26.
Anal pap smears to detect dysplasia and cancer were also not as widespread at the time.
‘Many people who are being diagnosed now were never vaccinated against HPV when they were younger,’ Rewari said.
‘We’re also a little better at catching it 1759174362, because doctors are more aware of symptoms and higher-risk patients. Things like smoking and immune suppression also add to the risk.’
Rewari said doctors are noticing that, today, women ‘who weren’t in the window for HPV vaccination’ are, in fact, showing particularly higher cancer rates.
Sullivan-Wagner recalled an immense stigma surrounding the diagnosis. At the time, her teenage children were learning in their health classes that HPV ‘only happens to promiscuous people,’ and said talking about the diagnosis was taboo.
She would share her diagnosis in a hushed tone, and her children frequently asked if they could use another word instead of ‘anal’ when they told friends.
‘I remember thinking, “Wow, they feel shame about this.”‘
Sullivan-Wagner is one of a growing number of women in their late 40s and early 50s to be diagnosed with anal cancer. She is pictured here with her grandson
Anal cancer caused sexual difficulties for Sullivan-Wagner and made it ‘impossible’ for her to have penetrative sex with Steve (left)
Following her diagnosis, Sullivan-Wagner underwent 25 rounds of radiation spread across five weeks. She also received chemotherapy during the first and last week of treatment. She was declared disease-free about six months later in 2008 immediately after completing radiation and chemotherapy.
‘It was a very survivable cancer,’ she said.
In stage one anal cancer cases, the five-year survival rate is 85 percent, according to the American Cancer Society. If it spreads to distant organs, however, that rate dwindles to 36 percent.
While lifesaving, the radiation used to destroy the cancer led to scarring in Sullivan-Wagner’s anal canal. This caused her to struggle with episodes of bowel urgency for about six months.
And because the anal canal is so close to the vagina, that scarring affected her vaginal walls, making penetrative sex with her husband, Steve, ‘impossible.’
Doctors later noted her vaginal walls could close in due to the trauma cancer treatment had done to that area. Steve feared he was hurting his wife.
She has experienced vaginal atrophy as a side effect, which causes the vaginal walls to become thinner, drier and less elastic.
‘The pain was urgent and severe. I couldn’t hide it, my body just knew something was wrong. It was all so traumatic for me.’
Sullivan-Wagner and Steve are pictured at their wedding in 2002. The couple temporarily separated in 2016 before getting back together in 2019
She went to pelvic floor therapy to help strengthen her pelvic muscles, and the couple experimented with different positions. But the scar tissue remained a barrier.
This drove a wedge between the couple, with Sullivan-Wagner determined to make sex work while Steve ‘didn’t want to be the source of [her] pain.’
‘It was really an all-time low,’ Sullivan-Wagner said. ‘We had really fallen apart.
‘Who wants to be that person that can’t have penetrative sex? It feels like [you’re] damaged goods.’
The couple separated in 2016 before getting back together in 2019, after keeping in touch during their separation. Sullivan-Wagner wrote Steve a letter during that time explaining ‘what I wish he knew’ about the damage cancer treatment had caused.
Despite therapies and medications, the damage to Sullivan-Wagner’s vaginal walls was permanent, and the couple will not be able to have penetrative sex again.
‘It’s one of those “dying wishes” for [Steve], just one more time.
‘I didn’t have the same devastation around it. The profound loss for me was what it did to our connection to each other in every other way.’
Sullivan-Wagner’s experience with anal cancer and sexual health issues led her to start the non-profit After Cancer, which works with oncologists and cancer patients to close communication gaps about the sexual side effects of cancer treatment
Sullivan-Wagner and Steve, pictured above, have come back together after separating
The experience led her to start the non-profit After Cancer, which works with oncologists and cancer patients to close communication gaps about the sexual side effects of cancer treatment and help doctors address these issues before they become permanent.
‘I mostly am teaching [doctors] how to do what should have been done when I went through it,’ she said.
‘You need to figure out how it’s going to be successful enough that it’s sustainable and this becomes just a standard in cancer care – that sexual health is addressed. I think it would make it kind of worth my trauma if it was.
‘Forget even about the shame of it being anal cancer or the stigma of that, bringing up sexual health is a difficult thing to do as a new cancer patient because it feels greedy.
‘I mean, you really do feel like, “Are you kidding? You’re fighting for your life, and you’re worried about whether or not you’re going to be able to have sex afterwards?”
‘I mean, it feels wrong. You feel like you’ll be negatively judged.’
Sullivan-Wagner also has noticed the stigma surrounding anal cancer slowly dissipating, especially as HPV vaccines have become available to older women who have not previously had them, and screening methods for HPV have improved.
She also urges patients suffering from symptoms like rectal bleeding, itching and unusual discharge to seek medical attention immediately, as the disease is most treatable when caught early.
‘Even though it just does feel like the s****iest thing ever, and I mean that with all the pun involved, it does get better. You survive that.’
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