Nº 246
Anal cancer and HPV: a history of awareness and stigma. Interview with Lillian Kreppel
Quote this article as:
L Kreppel (November 2023). Anal cancer and HPV: a history of awareness and stigma. Interview with Lillian Kreppel. www.HPVWorld.com, 246
You endured a diagnosis of anal cancer in your young age. Can you briefly describe your clinical record for HPW?
At first, I thought I had a hemorrhoid, but it stuck around for too long. I felt itching and then there was bleeding. While there was not a lot of blood, it was daily and consistent. I made an appointment with my longtime gynecologist. My vaginal Human Papillomavirus (HPV) test was negative. She gave me a Digital Anal Rectal Exam (DARE) and said I was fine. My gut, that inner voice I trusted, told me I was not fine.
The very next day I sought a second opinion from my trusted gastroenterologist. He looked with the anoscope and then conducted a sigmoidoscopy. He palpated the area with his fingertips and felt a hardening which should not have been there. Ten days later, in October 2017, the biopsy results confirmed I had stage II anal cancer. I underwent six weeks of targeted radiation and oral chemotherapy at Memorial Sloan Kettering Cancer Center followed by pelvic floor therapy. There was scarring in the vagina and as a muscle, pelvic floor therapy helps preserve the organ. However, this therapy is not protocol in some hospitals. Often, people who go without pelvic floor therapy have debilitating outcomes with lasting effects on their sexual organs.
Did you know about HPV before your diagnosis? Were you ever screened for HPV? Were you a regular attendee of the invitations to cervical cancer screening programs?
I knew I had HPV in my 20's when my gynecologist told me that I had abnormal cells that were caused by HPV. Many gynecologists don’t explain what causes an abnormal pap or that an HPV test is being conducted. In the more than 20 years that followed, I went to the gynecologist for an annual pap smear and did not attend cervical cancer screening programs. At the time of my anal cancer diagnosis, my pap smears had been clear for several years. The possibility of developing an HPV-related cancer, much less anal cancer, was not on my radar.
While anal cancer usually affects people in their sixties, I was in my early fifties. It is important for all of us to know that HPV associated cancers can develop in younger patients and to be vigilant for their symptoms.
Were you ever offered HPV vaccination?
I was never offered the HPV vaccine. By the time the vaccine came out in the U.S. in 2006, I had already been diagnosed with HPV and was outside of the original recommended age range. However, by the time of my anal cancer diagnosis and recovery, vaccine guidance had been amended and I have since been vaccinated. It is important for providers and patients to remember that the vaccine works against several high-risk strains and it may be administered to those who have had HPV or an HPV associated cancer, provided they are testing negative at the time of vaccination.
HPV conveys a stigma linked to their transmission mode, often linked to sexual behavior. How did you handle this additional emotional factor?
My organization, HPV Cancers Alliance (HPVCA), is heavily focused on destigmatizing HPV. If we can eliminate the stigma surrounding such a common virus, we can open the dialog to education, better prevention, and a reduction in illness and death. I was not particularly embarrassed when I was diagnosed with anal cancer, but I’m aware that many, if not most, patients are. I was simply a human who contracted HPV by doing normal human things. For a virus that is so common (an estimated 80% of the U.S. population are infected at some point in their lives) there seems to be a disproportionate amount of stigma around HPV and its related cancers.
What does your foundation contribute to disseminate knowledge on HPV and its consequences?
HPVCA is completely dedicated to bringing wellbeing to others and delivering a vision of the world without the suffering HPV can bring. HPVCA provides educational webinars, shares resources, provides patient support and runs campaigns designed to destigmatize HPV. We promote education, prevention through vaccination and screening. One of our webinars was shot in partnership with HealthyWomen in honor of National Girlfriends Day. My Co-Founder and HPVCA’s President, actress Marcia Cross, and I spoke about our personal journeys with anal cancer. We encouraged women to let go of any stigma surrounding their personal health and to support each other by encouraging regular health screenings.
HPVCA also monitors HPV-related legislation and tracks innovations in research and testing. We lean on our medical advisory board for input on these matters. They are some of the top medical specialists operating in immunology, oncology, radiology, gynecology, gastroenterology, urology, pediatrics, dental health, and ear nose and throat. Their insight and expertise help inform the organization’s efforts. In 2021, we held a virtual town hall meeting with members of our medical advisory board and legislators to discuss the PREVENT HPV Cancers Act. On November 15, 2023 we'll be visiting The White House to meet with administrators from National Cancer Moonshot Initiative to discuss how we can work together. We will also meet with U.S. congressional legislators at the Capitol as we try to gather Senate support for the PREVENT HPV Cancers Act.
What are the advances today in terms of the protective impact of HPV vaccination and the new opportunities for anal cancer screening?
The HPV vaccine remains the single most effective way to prevent HPV and its associated cancers. The U.S. Food and Drug Administration has recommended its use up to age 45 and we need to ensure health professionals are aware of this. Presently, there is inadequate screening for HPV cancers although there has been some encouraging research around anal cancer screening through the ANCHOR study. I hope it will lead to actionable anal cancer screening guidelines.
What is your message to patients suffering from a similar diagnosis?
I was HPV “free” for more than two decades when my gynecologist dismissed my anal cancer symptoms as a hemorrhoid. If I had listened to my gynecologist who said I was fine, even after performing a Digital Anal Rectal Exam (DARE), I may not be here today. I could have died. My message to someone who has ever been diagnosed with HPV is to be vigilant and to participate in regular screening activities and follow-ups. I also recommend that women request a Digital Anal Rectal Exam (DARE) by a gynecologist who knows how to conduct one properly. Some gynecologists don’t know how to or don’t think it’s necessary. They are missing anal cancers and it’s resulting in stage II, III, and IV diagnoses.
For men, screening and diagnosis are so much more challenging. They often don’t know they have HPV until it evolves into cancer. Men need to get vaccinated. They also need to educate themselves on the symptoms of HPV cancers affecting men and be vigilant. When unusual symptoms develop, they should not wait to see a doctor. The sooner the cancer can be found, the sooner it can be addressed and the more likely they are to experience a positive outcome.
What is your message to the health care providers and the health authorities and regulators involved in gynecological care?
I would like to see better education around vaccination guidelines and improvements in screening. First, the HPV vaccine is available for adults in the U.S. up to age 45. Even if someone has tested positive for HPV in the past, they may be a candidate for the vaccine.
Second, I would like to see the screening guidelines updated to recommend anal cancer preventive actions for all patients and especially, for those who have ever tested positive for HPV, had an abnormal pap smear, or are post-menopausal. Incidences for both cervical and anal cancers are rising in older women as our immune systems naturally decline.
Third, we need to ensure that gynecologists, physicians assistants and nurses working in gynecological health know how to conduct a DARE. It is more than sticking a finger inside the anus. There are folds and they must know how to feel around the area. A tumor would feel like an induration. We need the gynecological care community to understand what is at stake and why better standards of care are so critical.
Thank you very much for your educational testimony and wish you a successful recovery.
Thanks to HPV World for the work you do and for inviting me to share my story.
L Kreppel (November 2023). Anal cancer and HPV: a history of awareness and stigma. Interview with Lillian Kreppel. www.HPVWorld.com, 246
You endured a diagnosis of anal cancer in your young age. Can you briefly describe your clinical record for HPW?
At first, I thought I had a hemorrhoid, but it stuck around for too long. I felt itching and then there was bleeding. While there was not a lot of blood, it was daily and consistent. I made an appointment with my longtime gynecologist. My vaginal Human Papillomavirus (HPV) test was negative. She gave me a Digital Anal Rectal Exam (DARE) and said I was fine. My gut, that inner voice I trusted, told me I was not fine.
The very next day I sought a second opinion from my trusted gastroenterologist. He looked with the anoscope and then conducted a sigmoidoscopy. He palpated the area with his fingertips and felt a hardening which should not have been there. Ten days later, in October 2017, the biopsy results confirmed I had stage II anal cancer. I underwent six weeks of targeted radiation and oral chemotherapy at Memorial Sloan Kettering Cancer Center followed by pelvic floor therapy. There was scarring in the vagina and as a muscle, pelvic floor therapy helps preserve the organ. However, this therapy is not protocol in some hospitals. Often, people who go without pelvic floor therapy have debilitating outcomes with lasting effects on their sexual organs.
Did you know about HPV before your diagnosis? Were you ever screened for HPV? Were you a regular attendee of the invitations to cervical cancer screening programs?
I knew I had HPV in my 20's when my gynecologist told me that I had abnormal cells that were caused by HPV. Many gynecologists don’t explain what causes an abnormal pap or that an HPV test is being conducted. In the more than 20 years that followed, I went to the gynecologist for an annual pap smear and did not attend cervical cancer screening programs. At the time of my anal cancer diagnosis, my pap smears had been clear for several years. The possibility of developing an HPV-related cancer, much less anal cancer, was not on my radar.
While anal cancer usually affects people in their sixties, I was in my early fifties. It is important for all of us to know that HPV associated cancers can develop in younger patients and to be vigilant for their symptoms.
Were you ever offered HPV vaccination?
I was never offered the HPV vaccine. By the time the vaccine came out in the U.S. in 2006, I had already been diagnosed with HPV and was outside of the original recommended age range. However, by the time of my anal cancer diagnosis and recovery, vaccine guidance had been amended and I have since been vaccinated. It is important for providers and patients to remember that the vaccine works against several high-risk strains and it may be administered to those who have had HPV or an HPV associated cancer, provided they are testing negative at the time of vaccination.
HPV conveys a stigma linked to their transmission mode, often linked to sexual behavior. How did you handle this additional emotional factor?
My organization, HPV Cancers Alliance (HPVCA), is heavily focused on destigmatizing HPV. If we can eliminate the stigma surrounding such a common virus, we can open the dialog to education, better prevention, and a reduction in illness and death. I was not particularly embarrassed when I was diagnosed with anal cancer, but I’m aware that many, if not most, patients are. I was simply a human who contracted HPV by doing normal human things. For a virus that is so common (an estimated 80% of the U.S. population are infected at some point in their lives) there seems to be a disproportionate amount of stigma around HPV and its related cancers.
What does your foundation contribute to disseminate knowledge on HPV and its consequences?
HPVCA is completely dedicated to bringing wellbeing to others and delivering a vision of the world without the suffering HPV can bring. HPVCA provides educational webinars, shares resources, provides patient support and runs campaigns designed to destigmatize HPV. We promote education, prevention through vaccination and screening. One of our webinars was shot in partnership with HealthyWomen in honor of National Girlfriends Day. My Co-Founder and HPVCA’s President, actress Marcia Cross, and I spoke about our personal journeys with anal cancer. We encouraged women to let go of any stigma surrounding their personal health and to support each other by encouraging regular health screenings.
HPVCA also monitors HPV-related legislation and tracks innovations in research and testing. We lean on our medical advisory board for input on these matters. They are some of the top medical specialists operating in immunology, oncology, radiology, gynecology, gastroenterology, urology, pediatrics, dental health, and ear nose and throat. Their insight and expertise help inform the organization’s efforts. In 2021, we held a virtual town hall meeting with members of our medical advisory board and legislators to discuss the PREVENT HPV Cancers Act. On November 15, 2023 we'll be visiting The White House to meet with administrators from National Cancer Moonshot Initiative to discuss how we can work together. We will also meet with U.S. congressional legislators at the Capitol as we try to gather Senate support for the PREVENT HPV Cancers Act.
What are the advances today in terms of the protective impact of HPV vaccination and the new opportunities for anal cancer screening?
The HPV vaccine remains the single most effective way to prevent HPV and its associated cancers. The U.S. Food and Drug Administration has recommended its use up to age 45 and we need to ensure health professionals are aware of this. Presently, there is inadequate screening for HPV cancers although there has been some encouraging research around anal cancer screening through the ANCHOR study. I hope it will lead to actionable anal cancer screening guidelines.
What is your message to patients suffering from a similar diagnosis?
I was HPV “free” for more than two decades when my gynecologist dismissed my anal cancer symptoms as a hemorrhoid. If I had listened to my gynecologist who said I was fine, even after performing a Digital Anal Rectal Exam (DARE), I may not be here today. I could have died. My message to someone who has ever been diagnosed with HPV is to be vigilant and to participate in regular screening activities and follow-ups. I also recommend that women request a Digital Anal Rectal Exam (DARE) by a gynecologist who knows how to conduct one properly. Some gynecologists don’t know how to or don’t think it’s necessary. They are missing anal cancers and it’s resulting in stage II, III, and IV diagnoses.
For men, screening and diagnosis are so much more challenging. They often don’t know they have HPV until it evolves into cancer. Men need to get vaccinated. They also need to educate themselves on the symptoms of HPV cancers affecting men and be vigilant. When unusual symptoms develop, they should not wait to see a doctor. The sooner the cancer can be found, the sooner it can be addressed and the more likely they are to experience a positive outcome.
What is your message to the health care providers and the health authorities and regulators involved in gynecological care?
I would like to see better education around vaccination guidelines and improvements in screening. First, the HPV vaccine is available for adults in the U.S. up to age 45. Even if someone has tested positive for HPV in the past, they may be a candidate for the vaccine.
Second, I would like to see the screening guidelines updated to recommend anal cancer preventive actions for all patients and especially, for those who have ever tested positive for HPV, had an abnormal pap smear, or are post-menopausal. Incidences for both cervical and anal cancers are rising in older women as our immune systems naturally decline.
Third, we need to ensure that gynecologists, physicians assistants and nurses working in gynecological health know how to conduct a DARE. It is more than sticking a finger inside the anus. There are folds and they must know how to feel around the area. A tumor would feel like an induration. We need the gynecological care community to understand what is at stake and why better standards of care are so critical.
Thank you very much for your educational testimony and wish you a successful recovery.
Thanks to HPV World for the work you do and for inviting me to share my story.
DISCLOSURE
The author has no conflict of interests to disclose.
DISCLAIMER
The views and opinions expressed in this article are based on the Author’s own clinical experience, which constitutes a particular clinical case and may not concur with the general guidelines and recommendations of public health institutions.
