The 2022 Virtual Anal Cancer Patient Summit is an opportunity for anal cancer advocates, patients, and caregivers to learn, connect, and be empowered!

Sessions will feature invited speakers: from oncologists to physical therapists, to thrivers who have faced anal cancer themselves. We look forward to bringing together the anal cancer community for a day dedicated to living and thriving with and after anal cancer.

Saturday, October 1st 2022.

Register here

More information to come.

 

 

On June 5th, the third day of the 2022 International Anal Neoplasia Society (IANS) Scientific Meeting in New York, a panel of brave and outspoken thrivers shared their experiences with the assembled medical experts, in a session entitled. “Rare and Misunderstood: Ten Years Later – Narratives and Perspective on the Anal Cancer Experience.” The session was led and facilitated by Patient Advocate at IANS, Mary-Jo Murphy. 

Daun R., Steven P., Dr. Stephen W., John K., and ACF Executive Director and Co-Founder Justine Almada joined Mary-Jo to give testimony of their journeys and outline steps for the future. 

Mary-Jo, herself an anal cancer survivor, began the talk by introducing her fellow speakers and framing the conversation. She made it clear that she wanted all voices of the anal cancer spectrum to be heard, and noted with both pragmatism and optimism about how far the field still needs to go. 

The panel started with Daun’s exceptionally candid recalling of her experiences with precancer. Her story worked to remind all those assembled that screening and treatment for any HPV-associated malignancy—not just cancerous ones—can be devastating and are in dire need of improvement. From there, Steven Post detailed his equally grueling experience dealing with anal cancer, on top of the additional isolation caused by the Covid pandemic. Steven was honest about his struggles with mental health—which had impacted him prior to diagnosis and which he continues to struggle with to this day.

Married thrivers Dr. Stephen Weitzman and John Kneapler followed, each with their own perspectives on being longer-term thrivers. Stephen shared his experience of enduring difficult and long term anal cancer side effects and his view going from physician to patient. John was prompted to learn more about anal cancer by his partner’s diagnosis and shared his journey finding a doctor who would treat his anal precancer. Both John and Stephen supported each other through the cancer diagnosis and recovery process, including painful career upheavals.

Finally, Justine Almada shared the story of her own mom’s anal cancer journey, who was diagnosed at 51 with stage IV anal cancer.  In their mom’s name, she and her siblings started the Anal Cancer Foundation to end anal cancer and improve the lives of those affected by it. Justine put forward their vision for ending the disease and called on everyone gathered to join together and RAISE their game.

Her call for RAISE means that we, collectively:

Refer to comprehensive care, both during and after treatment
Advocate for screening
Invest in research for new treatments
Stop the Stigma with connection and community
Ensure early and accurate diagnosis 

These were raw and honest first-person stories from people who have been through the isolating, confusing, and painful experience of anal cancer and precancer. 

Many of the thrivers had positive experiences with—and thanked—several experts in the room, despite the difficult side effects they still deal with from treatment. They gave no-holds-barred details on what had happened to them and how their lives had been changed by anal cancer and precancer. Thrivers asked that the assembled doctors advocate for complete and early vaccination, entreating them to not lose connection with the human side of patients, being open to learning from them too. 

The assembled researchers, providers, and other professionals were clearly extremely moved by the stories the patient panel shared. During Q & A, they expressed their gratitude. Several, like Dr. Michelle Khan of Stanford, asked the panel their perspectives on what could make pre- and post-treatment surveillance easier and better for patients. 

 The road ahead in anal cancer prevention and treatment improvement is long, but the scientific meeting and patient panel made it clear that no one is in this alone. Let’s thrive on, together!

Group of women at a conference smilingOn June 3-5, researchers and medical professionals from all over the globe came together at the 2022 International Anal Neoplasia Society (IANS) Scientific Meeting In New York.

They gathered to discuss best practices in anal cancer prevention and treatment, presenting their research and specific clinic experiences. Anal cancer and pre-cancer data were also shared by Dr Ashish Deshmukh. His research showed that globally, non-Hispanic white women have the highest rise in new anal cancer diagnoses and that smoking is a significant player in anal cancer and precancer.

Anal cancer risk diagram

Throughout, many of the presentations focused on improving pre-cancer treatment guidelines and screening recommendations to catch as much cancer and precancer as early as possible. Because the timeframe from the development of HSIL (anal pre-cancer) to cancer is unknown, the experts stressed that screening should be initiated prior to age of cancer risk.

Attendees at anal cancer conference

In 2012, the Anal Cancer Foundation provided the seed grant to begin IANS, the first medical society dedicated to the prevention and treatment of anal pre-cancer and cancer. A decade later, IANS is growing and held its most recent annual meeting. ACF’s Justine Almada and Laura Lazar were in attendance. Ms. Almada was an invited speaker who gave remarks on how we can raise the game in our fight against anal cancer. We’ve summarized a few key presentations from the weekend, including the ANCHOR Trial results, new data on who is being diagnosed with anal cancer, and the powerful patient panel.

The ANCHOR Study 

Group of people at a conference smilingOne of the major highlights of the weekend was Dr. Joel Palefsky’s presentation on the groundbreaking ANCHOR study. Dr. Palefsky was introduced by his longtime colleague Dr. Naomi Jay, who pointed out that, “None of us [doctors, researchers, patient advocates, and thrivers] would be in this room today without Joel”. 

For a primer on ANCHOR, check out our past blogs!:

What did Dr. Palefsky share?

Check out our ANCHOR Study Q & A for all the details.

Patient Panel: Rare and Misunderstood

People listening to a speaker at a conferenceOn day 3 of the conference, a panel of brave and outspoken thrivers shared their experiences with the assembled medical experts. We dedicated an entirely separate blog post to their stories. Please check that out!

Merchandise with the IANS logo on

The entire weekend it was clear how passionate and dedicated all who joined were to ending the trauma caused by anal cancer and precancer. Doctors and researchers came to the ACF table to learn more about our peer support program so they could share this and other resources with their patients.

Anal Cancer Foundation stall at an event

We were so thrilled to be a part of this first meeting after three years! The commitment to changing the game, and momentum towards ending anal cancer and HPV-associated illnesses was inspirational to witness.

The groundbreaking ANCHOR study showed that early detection and treatment of anal HSIL (anal precancer) reduces cancer progression by 57%. Today, the study and results were published in the New England Journal of Medicine. The study was conceived by Anal Cancer Foundation scientific advisory board member Dr. Joel Palefsky, and supported through advocacy efforts by the Foundation.

WHAT IS THE ANCHOR STUDY?

The ANCHOR Study hoped to improve patient outcomes for people with anal precancer and cancer by finding the best way to stop anal precancer from progressing to cancer.

ANCHOR stands for Anal Cancer HSIL Outcomes Research and the study investigated if treating anal cancer precursor lesions reduced cancer risk for people living with HIV. The incidence of anal cancer is highest in people living with HIV which is why they were chosen for this study.

ANCHOR aimed to recruit 5,000 people living with HIV and randomized participants into two groups: a group who received treatment for anal precancer, and a control group.

WHO CONDUCTED ANCHOR?

ANCHOR occurred in 25 locations around the United States. It was conceived and led by Anal Cancer Foundation Scientific Advisory Board Member Dr. Joel Palefsky.

WHAT WAS ANCHOR RESEARCHING?

Prevention and early detection are essential to ending anal cancer. Yet, despite its growing incidence and mortality, there are no national screening guidelines for anal cancer or precancer. We know that rates of cervical cancer reduced by 80% once doctors started screening for, and treating, cervical precancer.

The hope was that the ANCHOR study would illustrate that treating anal precancer reduces the risk of anal cancer—and it has now done so!

The Anchor study had two main objectives: to determine the effectiveness of screening for and treating anal precancer to reduce the incidence of anal cancer in HIV-positive men and women, and to create a bank of blood, anal swab, and tissue specimens to support critical scientific studies on how anal cancer progresses.

There were two arms in the study: one arm that received treatment for anal precancer and a control arm that did not.

Ninety percent of anal cancer is caused by the human papillomavirus (HPV), which can cause changes to the skin around and inside the anus. These changes are called “high-grade squamous intraepithelial lesions” or HSIL. About half of HIV+ men who have sex with men have anal HSIL. The study discovered that nearly half of HIV+ women do as well. Not all anal HSIL will develop into cancer. Most HSIL will go away on its own, but some becomes cancer over time and can eventually spread to other parts of the body.

WHAT DID THEY LEARN?

Most importantly, the study found a 57% reduction of anal cancer in people whose precancer was treated.

As this was the first study of this size and purpose, the researchers sought to discover additional information about HSIL and anal cancer. Additional findings include:

  • A higher prevalence of HSIL than anticipated. This was most surprising in women. They were expecting 10% prevalence but found 47.2%.
  • The study diagnosed 17 people with cancer, which was higher than expected.
  • There was a younger median age at diagnosis than expected.
  • There was no real difference in age, race, or gender in those who progressed to cancer, but a large difference in cancer progression in smokers as compared to nonsmokers.

WHY DID THE STUDY LOOK AT TREATMENT SOLEY IN HIV-POSITIVE PEOPLE?

They are at the highest risk for anal HSIL and anal cancer.

WHY DID THEY STUDY HSIL TO PREVENT ANAL CANCER?

We know that treating cervical HSIL (precancer) is an effective way to reduce the risk of developing cervical cancer. Anal cancer and cervical cancer are similar enough that cervical is a good cancer prevention model to follow.

HOW DID THE STUDY WORK?

There were two arms: a treatment arm and a monitoring arm. In those randomly assigned to the treatment arm, when patients showed up with evidence of HSIL they were treated immediately with hyfrecation (burning off skin lesions), infrared coagulation (using infrared light as a heat source to cut off blood supply to internal hemorrhoids), fuorouracil (5-Fu) cream, or imiquimod cream. Whichever the provider chose, they had to follow a very specific treatment algorithm.

In the active monitoring arm, HSIL was monitored closely but with no treatment. The ultimate goal was to get rid of as much HSIL as possible.

WHAT ROLE DID ACF PLAY?

The Anal Cancer Foundation built and led the coalition of organizations that supported and pushed for the study. As part of its advocacy, ACF submitted testimony on behalf of the organizations in 2011 and 2012. At the time it was called the HOST study.

WHAT DOES THIS MEAN FOR THE ANAL CANCER COMMUNITY?

Anal cancer is rapidly increasing at 3% a year. More people are being diagnosed with late-stage anal cancer than ever before.

The study proved that treating anal precancer in people living with HIV, the group at highest risk for developing anal cancer, reduces their cancer risk. The researchers also found there is room for improvement in how we treat anal lesions and a great need for new medical training programs to address screening and early treatment. We need standard methods to find it early.

The Anal Cancer Foundation sees the ANCHOR trial as a critical step toward ending anal cancer. It is the first definitive evidence that early screening makes a difference. The next steps are ensuring screening becomes standard for people living with HIV, and focusing on how we can leverage these results to help people at risk for anal cancer who were not in the study population. It is also clear that we must support efforts to better train medical physicians to find and treat anal cancer before it ever becomes cancer.

HELP SUPPORT MORE PROGRESS LIKE ANCHOR

Treatment for anal cancer has long been neglected. We are changing the landscape with outcomes like the ANCHOR study. Please support our work.

We recently held the inaugural webinars in our 2022 Expert Hour webinar series: Clinical Trials 101 and Immunotherapy 101.

Dr. Lee Rosen of the University of California, Los Angeles, and Dr. Julius Strauss of the National Institutes of Health were the first two experts to hold informative and insightful sessions. We were thrilled at the quality and depth of information about anal cancer they each brought directly to the community.

We are so grateful for the time Drs. Rosen and Strauss put into their presentations and for taking the time to respond to audience questions and concerns with such kindness and clarity. This is our entire goal for this series: getting you the same information as your providers have. When you are empowered with knowledge, you can have more in-depth and productive conversations with your medical team and get the best care to suit your needs.

Clinical Trials 101Presentation slide about how to judge treatment success

March 18: Clinical Trials 101: Dr. Rosen guided us through myths and facts about clinical trials, provided questions to ask when considering a trial, and outlined how to frame clinical trials during the treatment journey.

Watch the Clinical Trials 101 replay.

Learn more about clinical trials for anal cancer.

Immunotherapy 101

Presentation slide entitled "Intro to Immunotherapy"

April 21: Immunotherapy 101: Dr. Strauss presented on the types of immunotherapies and how they work, what factors affect response to immunotherapy, potential side effects, and how to access immunotherapy clinical trials.

Watch the Immunotherapy 101 replay.

Learn more about immunotherapy for anal cancer.

After both presentations, we concluded with a robust Q & A. Audience members had their questions answered directly by each doctor.

Thank you to our experts and to our participants! We hope the first two sessions of this ongoing series have provided you with information and support. As we plan out future events please do not hesitate to let us know how we can better support you through our work!