Hear candid conversations between people conquering cancer – patients, their family and friends, and doctors and researchers working to help us all.
This was the eye-opening experience of Lillian Kreppel, whose delayed diagnosis prompted her to learn more about HPV-related cancers. During treatment, Lillian found stark gaps in HPV information, including a lack of public awareness and patient education, inadequate guidelines for cancer screening, and a lot of HPV-related social stigma. Now a survivor, Lillian leads the HPV Cancers Alliance, an advocacy organization she co-founded to help improve HPV education for patients, providers, and the public.
In this episode, Lillian tells Your Stories host and fellow cancer survivor, Brenda Brody, how research is helping doctors to more effectively treat HPV-related cancers. She shares key lessons for patients navigating screening and treatment, debunks stigmas and myths surrounding HPV, and highlights the importance of patient advocacy and donor-funded research.
WHAT YOU'LL HEAR IN THIS EPISODE:
• How seeking a second opinion can be life-saving
• What people should know about HPV and cancer
• The importance of advocating for HPV-related cancer research
• Why more awareness and research for HPV-related cancers is necessary
In 2017, Lillian saw blood in her stool consistently for a few days, prompting her to visit her doctor. After a Pap smear and standard tests, Lillian’s doctor said the results looked clear. But knowing something felt off with her body, Lillian sought a second opinion. Her new doctor ordered several tests and screened for cancer more thoroughly. Listening to her own body and advocating for herself may have saved Lillian’s life.
“[My doctor] said, ‘it’s not the best news.’ And I thought to myself, what?! My parents never had cancer and I have longevity in my family. He said, ‘You have a malignant tumor. Cancer.’ And then he said: ‘it’s treatable.’ And that’s what I heard,” says Lillian. “I heard, ‘treatable’ – and I took that, and I went with it.”
Diagnosed with HPV-related stage II anal cancer, Lillian began treatment immediately. She underwent six weeks of radiation treatment paired with oral chemotherapy. The chemo was relatively easier on her body, but the radiation gradually became more difficult to endure. Cancer researchers are working to make such treatments easier and more tolerable for patients.
“I know [doctors] are working on doing less radiation because it’s so damaging,” says Lillian. “There's also immunotherapy, which is big now for patients with anal cancer.”
Knowledge is Power
During treatment, a sobering interaction with an older patient inspired Lillian to learn more about HPV. Lillian attempted to encourage and affirm the patient, but they expressed hopelessness related to their condition and shared common misconceptions around HPV. This moment – paired with Lillian's delayed diagnosis – planted the seed for Lillian to learn more about HPV and later start the HPV Cancers Alliance.
“The average person has no idea what HPV is, they don’t know there’s a vaccine for it, they don’t know that it can cause cancer and the types of cancer it can cause, they don’t even know they’re walking around with it,” says Lillian. “So, I thought, wow, this is a perfect time to get going with this. [HPV] is the most common, pervasive virus, and everybody needs to know about it. [HPV] is very preventable and treatable.”
HPV and Cancer: An Overview*
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Nearly all sexually active people will get HPV at some point during their lifetime.
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HPV is transmitted through skin-to-skin contact, including sexual activity, and can be transmitted even without showing signs and symptoms.
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More than 150 types or “strains” of HPV exist, but only some can cause cancer.
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HPV can lead to cervical, oropharyngeal, anal, penile, vaginal, and vulvar cancers, the latter four being relatively rare types of cancer.
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There is an HPV vaccine that safely and effectively prevents lasting infections.
Lillian co-launched the HPV Cancer Alliance to promote this vital knowledge and patient information around HPV-related cancers. She also works to destigmatize HPV-related cancers, most of which affect parts of the body that are infrequently or rarely discussed. Additionally, for some people, the link between HPV and sexual activity can provoke feelings of discomfort or shame.
“How I’m conquering [cancer] is education, education, education. Get the word out,” says Lillian. “Together, we’re stronger.”
*Source for 1 and 2 above: Centers for Disease Control and Prevention.
Source for 3, 4 and 5 above: Cancer.Net.
Accelerating Research and Advocacy
Through her organization, Lillian advocates for more research focused on improvements in screening for HPV-related cancers.
“I’d love to have [screening] guidelines change so an anal Pap smear is included for high-risk HPV patients,” says Lillian, who serves as a patient advocate for the Rectal-Anal Task Force for the National Cancer Institute.
She also encourages people to continue supporting cancer research. Donor-funded research is necessary for advancements in cancer care to continue.
“Cancer research has gotten us to where we are now,” says Lillian, who is now more than five years cancer-free. “10 years ago, nobody even spoke about anal cancer; if you Googled it, there was nothing. Research, development, information... it’s so crucial.”
Lillian Kreppel had to advocate for herself and seek a second opinion before receiving a delayed diagnosis: HPV-related stage II anal cancer. During treatment, she found stark limitations in HPV information, including lack of public awareness and patient education, inadequate guidelines for cancer screening, and a lot of HPV-related social stigma.
Now a survivor, Lillian leads the HPV Cancers Alliance, an advocacy organization she co-founded to help improve HPV education for patients, providers, and the public. She shares key lessons for patients navigating screening and treatment, debunks stigmas and myths surrounding HPV, and highlights the importance of patient advocacy and donor-funded research.
