Anal Cancer Survivor

Survivor Pushes Aside Stigma to Raise Awareness

Lillian Kreppel knew she had HPV because like many women, she’s had an abnormal Pap. Always diligent about preventive checkups, she saw two doctors when she began having suspicious symptoms and was diagnosed with Stage II anal cancer at 53. After successful treatment that she credits to superb medical care and a rock-solid circle of friends, Lillian dove headfirst into bringing this rare cancer into the spotlight.

 

 

Cream didn’t work on what I thought was a hemorrhoid. If anything, it just made the sore area angrier. It itched, and I consistently had a small amount of blood in my stool. I explained my symptoms to my gynecologist during my annual exam. She performed a cervical Pap, which was painless, but when she did the digital rectal exam, I jumped because it hurt. She didn’t feel anything out of the ordinary and assured me I was fine, but I wasn’t convinced. When I sat on the floor and straightened my legs during Pilates, I felt like I was sitting on something. Something wasn’t right.

Because of a family history of colon cancer, I’d had a GI doctor for years, whom I loved and trusted, and I made an appointment. He informed me that we’d need to do an anoscopy, and it would likely be the most embarrassing test I’d ever have because he needed to take an up-close look into my anus with a light and magnifying glass. It was very uncomfortable, and he seemed uneasy when he told me that I’d need a sigmoidoscopy very soon.

Two days later, I had the sigmoidoscopy. When it was over, he told me I had a cancerous tumor. I asked him why he thought that when he hadn’t even done a biopsy. He said he could tell from the images and also how it felt when he palpated it. I asked hopefully if he was ever wrong, and he half-laughingly said, "No." He did, however, feel it was treatable.

My first reaction was, “How the hell did I get this?” quickly followed by, “I don’t have time for this cancer, what do we do?”

Tests confirmed the Stage II anal cancer diagnosis. I wasn’t horribly upset very often throughout my diagnosis and treatment, but waiting for those results was one of the scariest moments of my life.

I researched the disease and chose a local hospital with an outstanding reputation worldwide for cancer care. It’s so important to find a hospital and doctors with extensive experience treating your type of cancer, especially if it’s rare. Look for a hospital that is an NCCN affiliate for the most leading-edge treatments. If you don’t have friends who can recommend a hospital, reach out to an advocacy group. My research led me to the Anal Cancer Foundation (www.analcancerfoundation.org) and one of its co-founders, Justine Almada. That was the start of a great alliance.

The protocol for treating my diagnosis is six weeks of radiation therapy combined with chemotherapy (mine was oral). Even though I felt confident with the medical team, I got a second opinion from the head of colorectal surgery at another hospital. He agreed with the plan, and I began treatment at the first hospital.

Physically, I was capable of going to radiation therapy alone, but I wanted my friends with me. I made a calendar and scheduled a friend or two for every appointment. That way, I was just hanging out with my friends. It gave me a sense of normalcy.

My oncologist told me treatment would get tough toward the end. The radiation burns were painful. I used a lot of cream. A friend who’d also had cancer recommended keeping an aloe plant in the fridge. I’d cut off a piece and rub the liquid aloe over the raw areas. It was cool and soothing. I lost my appetite and didn’t really want to eat because it was so painful to have a bowel movement. For the last month, I took painkillers, which can cause constipation. That was a vicious cycle.

To celebrate my last treatment, I threw a party with toilet paper centerpieces, a butt-shaped piñata with a string bikini and thank-you plaques for my doctors. Justine from the Anal Cancer Foundation spoke about HPV and the dangers of it turning into cancer, symptoms to know and the importance of vaccinating children at 11 or 12 when their bodies are most immuno-responsive.

I have follow-up appointments every three months. Now my goal is to educate and empower others and reduce the stigma surrounding anal cancer and HPV. That includes making women aware that if they’ve ever had an abnormal pap, even 25 years ago, the HPV virus is likely still in their system and can turn into cancer at any time. It can lie dormant for decades. For men, unfortunately, there is no test, and they should be aware of any changes in their head, neck or throat, since this is where it affects them. It’s important to press on, like I did, because most doctors are not experienced in detecting anal cancer. When my gynecologist did my rectal exam, she was just checking my ovaries from behind. She isn't skilled in diagnosing anal cancer. This is exactly why getting the word out about prevention, including the available tests and where to get them, is critical.

To help the cause, I reached out to celebrity (and overall wonderful person) Marcia Cross. Marcia’s willingness to discuss her anal cancer diagnosis is helping extend the reach. I also founded a nonprofit organization, The HPV Alliance. I speak candidly about my experience to inspire others to take charge of their own health. This should be a disease that no one has to die from.

 

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