Anal Cancer Foundation - Passion, Determination & Love: A Conversation with Justine & Camille Almada

For Justine, Camille, and Tristian Almada anal cancer is personal. After losing their dear mother, Paulette, to Stage IV HPV-related anal cancer in 2010, the siblings set out to change the course of this disease. In her honor, they created what they wished had been available to them, The Anal Cancer Foundation. For over a decade, their work has improved awareness as they advocate for policies that help eradicate the disease and educate about the importance of early detection and HPV vaccination uptake. In this interview, the two sisters describe not only their frustration with the lack of research and treatment options when their mother was diagnosed but also their vision that provides peer support and contributes to long-overdue research. In this moving and inspiring interview Camille a nurse practitioner in oncology expresses her hopes to cast a wider to all HPV – related cancers. With the message “You are not alone,” Justine discusses the victories that have changed the face and experience of anal cancer, offering hope to thrivers whose lives are made better by the Anal Cancer Foundation’s gallant vision.

Camille’s expressed views are her own and do not reflect those of her employer, Mount Sinai Health System.

The Anal Cancer Foundation was a strong financial support for the establishment of IANS.

IMPROVING BARRIERS TO INTIMACY – A TOOLBOX

Irena Nurkic is a specialist in continence and pelvic health physiotherapist at the Royal Perth Hospital in Western Australia. With over fifteen years of in-depth clinical expertise in management of pelvic health conditions in women, men and transgender persons, she lectures and serves as a clinical tutor at Curtin University.

In this interview Irena generously shares her passion for learning and translating science into patient care. She applies her expertise to improve and manage often ignored biological changes of post-pelvic radiation. Her approach is person-centered, supporting the patient in identifying hard-to-discuss sexual, incontinence and pelvic pain issues. She discusses her team’s interdisciplinary approach and her role as a PT in guiding her clients in what to expect after treatment and in setting short and long-term personal priorities and aspirations. Her expressed expertise is filtered through her approachable, kind, and sensitive demeanor. All patients' issues and goals are different. She offers hope for often ignored post-treatment quality-of-life concerns. She validates that “bowel, bladder and sexual dysfunction post-radiation are a problem, and we have tools.”

In this podcast Dr. Wong discusses how a talk he heard about HRA, high resolution anoscopy, piqued his interest in something he knew nothing about. He reasoned because he was caring for HIV patients that he should know more. He found his way to places where HRA was done and where he could be trained. His interest and dedication took him from his home in Hong Kong to Australia, to New York and San Francisco, where he learned from the experts. In a compelling interview, Dr. Wong shares the challenges and successes of his impressive professional journey. He discusses his fascination with this specialty and his commitment to bringing more trained specialists to Asia.

Dr. Mary Birdsall didn’t see herself getting anal cancer, and neither did her physician colleagues. As a GYN specializing in IVF she found herself, not the expert, but the “man on the street.” In this interview, she speaks frankly and passionately about her own struggle to have her symptoms taken seriously and her commitment to agitate for primary and secondary prevention. She shares of how deeply troubling the diagnosis was and how isolated she felt. “You’re not the person who’s supposed to get this,” was her GI doctor’s response. She explores the disservice this lack of awareness does to women and speaks hopefully of her dreams for the future. “I wish for anal cancer to be entirely prevented much like the trajectory for cervical cancer because we have the knowledge and the tools we just need to implement them.”

Dr. Birdsall created ACSSA, Anal Cancer Support Services Aotearoa https://www.analcancer.co.nz/who-we-are to serve anal cancer and pre-cancer patients in New Zealand and Australia.

THE ANUS HAS A PERCEPTION PROBLEM 

The founders of the HPV Cancers Alliance, Lillian Kreppel and actress, Marcia Cross speak frankly about how their own experience with anal cancer became the impetus to get the word out about HPV – related cancers. One had symptoms that were dismissed, the other no symptoms. It’s the difference between life and death that women ask their GYNs for a simple DARE exam. Marcia and Lillian are outspoken in this interview about their commitment to changing attitudes about an important and stigmatized body part. “It’s not my area,” is not an answer they are willing to accept. They talk about their commitment to do something, by educating both women and their doctors about the importance of crossing the “magic line.” 

BE PRESENT FOR THE PEOPLE YOU LOVE

Alana Stewart stayed at Farrah Fawcett’s side supporting and advocating, through treatments and ultimately her friend’s heartbreaking death. This interview with the president of the Farrah Fawcett Foundation, reflects the kindness and love present in the pages of her best-selling book, My Journey With Farrah. A Story of Life, Love and Friendship.

With warmth and frankness, Alana shares her experience as a friend and caregiver. She discusses the creation of the 2009 Emmy award-winning documentary, Farrah’s Story.   With humility, she recreates how she accepted the role of filmmaker. Her images brought to the public an intimate glimpse of the ugliness of cancer and the beauty of their sisterhood.

Farrah herself established The Foundation and intended to run it. Her vision was to bring research dollars to lesser known cancers and to help those in need by providing patient assistance. Alana discusses their collaboration with Stand Up To Cancer, SU2C, a program of the Entertainment Industry Foundation that raises funds for translational cancer research. 

With warmth and frankness Alana discusses what her life was like before, during and now, as the journey continues. She imparts important life lessons for caregivers who live through similar stress, fear and anxiety.

With the tenderness of a person whose life has been profoundly changed, she expresses her insights. “Be grateful. Show down. Live every moment. Life is valuable.”

New York City general surgeon, Stephen Goldstone, was working in the realm of ano-rectal surgery, when he began noticing “strange histology.” At the same time, the University of California San Francisco, UCSF, was doing early research on anal cancer and pre-cancer. What he calls “a match made in heaven” combined research and treatment and heralded historic change in how anal cancer would be talked about and treated around the world.

The second president of IANS discusses his personal and professional journey and his book The Ins and Outs of Gay Sex: A Medical Handbook for Men. In a tone that reveals why his patients love and respect him, he offers practical, frank advice on anal hygiene and post-treatment sexuality. His guidance is relevant to all sexes.