Anal CancerPatient Stories

Out of the Shadows

Michele Longabaugh, who passed after this article was written, addresses the stigma associated with anal cancer and her battle with this tricky disease, which she turned into a blog, a book, and advocacy efforts to help others.
October 2020 Vol 6 No 5
Michele Longabaugh
Wichita, Kansas

For me, it was the perfect life. It was 2009, I was 47 years old, the mother of 3 grown children who were at various stages of finding their own respective paths with college and career, and had found a comfortable existence in Wichita, Kansas, with my husband and kids. It was a life that provided me enormous professional satisfaction and personal contentment.

Journey of Discovery

Receiving a cancer diagnosis was not on my radar. I had always been in good health, which included regular exercise and a healthy diet of the essential food groups, making me look younger than my 47 years.

Despite being devoid of any acute health concerns, I had a chronic hemorrhoid issue for a few years, which would flare up, die down, flare up again, and become an afterthought. I was also experiencing a bout of sciatica in my right buttock and leg. I’d had it off and on for years and thought that maybe this was the year of taking care of all my little annoyances. This is where my journey of discovery began.

During the exam, I noticed a distinct change in my physician’s behavior and facial expression. It went from his normal, placid calmness to a look of grave concern that I will never forget. What he observed was not a hemorrhoid after all. He shared with me that it was something he had never seen before, but clearly worthy of another set of eyes, and implored me to make an appointment immediately with a colorectal surgeon, who could make a more accurate determination and a treatment plan.

None of the Risk Factors

Despite the urgency with which my doctor was treating my condition, cancer—and specifically anal cancer—was never part of our conversation. I had none of the predisposing risk factors, such as HPV, a positive pap smear, or a history of smoking, so I figured that this was serious, but not potentially life changing. I consulted my best friend, who is a nurse practitioner and who suggested a specific surgeon whom she deemed “the best in town.”

My visit to the surgeon did not shed any immediate new light on my situation; however, he knew enough to take a biopsy and order a colonoscopy. He doubted that the sciatica pain had anything to do with it, so he referred me back to my primary care doctor.

The results of the biopsy came back within 3 days, and after conferring with my surgeon, he explained that I had anal intraepithelial neoplasia, or AIN. Medically, AIN is defined as a pre-malignant lesion of the anal mucosa that is a precursor to anal cancer. To me, this was a big fancy word to describe localized skin cancer in the anal region. Unfortunate, and potentially embarrassing, but not a game-changer.

Several days and an MRI later, my primary care doctor informed me that I had an “area of concern” in my lower back that would need immediate attention from a neurosurgeon. “Wait. What?” I managed to get an immediate appointment, after which I was told that I had a sacral tumor pressing on my sciatic nerve.

Yes, the neurosurgeon thought it was cancer, perhaps sarcoma. But no, he did not think it was related to anal cancer. It needed to come out immediately.

With my husband.

Arbitrary Diagnosis?

In 2010, when I was initially diagnosed, there was not a wealth of information on my condition. At that time, no new treatments were available and had not been in years, and little ongoing research was conducted by biopharmaceutical companies.

This was such an arbitrary diagnosis for me, and it left me wondering to myself, “How did I get this? What did I do to make this happen?” Of course, I realized that I did nothing to get this cancer, and others who have found themselves in similar situations on the receiving end of a cancer diagnosis—although living a healthy life—have likely asked themselves the same question.

What was available for newly diagnosed patients with anal cancer like me was information on clinical trials for men and women diagnosed with HPV and anal cancer, which clearly was outside the realm of my diagnosis. This left me with little usable information I could apply to my specific condition.

I remember being in the hospital awaiting my sacral tumor biopsy results, and meeting in my room for the first time with my oncologist, who began to look at my charts. After a brief and silent call to his pathology colleague I saw him scribble “stage IV anal cancer, palliative care” into my chart. He had put all the pieces together. I knew exactly what it meant, and it left me stunned. Better yet, it rocked my world.

The doctor’s prognosis was equally grim, as he told me that if the cancer was already in my bone, it had probably spread elsewhere into other regions of my body, and I “likely would not survive.”

I was shocked at what I had just heard, and none of it seemed real. How does someone who has had such a healthy track record get cancer? As I think back to that time, it still feels unreal.

A Lot We Can Do

Additional scans determined that I had a rare cancer, with a rare presentation, that was only localized into one area, and had not advanced anywhere else in my body. This was good news, and my radiation oncologist shared my optimism, saying, “There’s a lot we can do.”

The initial treatment plan after surgery was to follow with simultaneous rounds of radiation and chemotherapy, which would be “hard,” and to prepare myself for the worst. “Hard?” Not even close in describing the ill effects of receiving 2 rounds of chemo lasting 96 hours each, along with 7 weeks of radiation, which ended up putting me in the hospital for the final 2 weeks of treatment, just to help me deal with the pain caused by the treatment.

During this time, I had reached a point of “almost” no return, and was going to ask my radiation oncologist to suspend my treatment temporarily so I could gain back a bit of strength, which would allow me to soldier on and finish the treatment. He explained to me that doing so would be detrimental to my prognosis, and would put me back almost to square one, with the disease returning to its original level. The prospect of starting over was less than appealing, so I mustered strength from somewhere and completed the treatment.

Despite the arduous nature of the treatment and its ill effects on my physical health, which caused me unimaginable pain that required round-the-clock pain medication, I made it through. There were several dicey moments, when I was so sick from the treatment that my family was concerned that I would not survive it. And so was I.

Fast forward to September 2010, I was pronounced “cancer free.” We were excited that the treatment had worked, but my oncologist reminded me that, “You have stage IV cancer; so let’s be positive, but stay vigilant and watch you carefully.” Which we did, and 2 years later, a spot on my lung was found, which was removed surgically.

Re-Purposed Life

Cancer giveth and cancer taketh away. I remain plagued with physical reminders of these battles fought and won; long-term side effects that will not allow me to forget what I’ve been through. Side effects that, although treatable, never really go away.

I have pelvic floor dysfunction, which affects the muscles and tendons in the pelvis. This has led to struggles with bowel and bladder incontinence, and sexual dysfunction. I also have bilateral avascular necrosis in both hip bones, for which I already had my right hip replaced. I have periods of extreme fatigue in the wake of the radiation.

I also have short-term memory loss, often referred to as “chemo brain,” as well as PTSD that was brought on by the pain and suffering of my brutal initial treatments. And yet, here I remain, and what this disease had taken from me, had put me in a position to live what I call a re-purposed life.

Anal Cancer Stigma

I am not the first patient with cancer who has benefited from the gifted intellect and hands of oncology’s best and brightest doctors, but there is nobody more grateful or committed than yours truly. When I was diagnosed, my goal was to get treated and get better. That was followed by becoming cancer free.

These days, my goal is to share my story with patients with cancer and caregivers, doctors, nurses, and researchers at the bench and in the front office.

Recently, I had the good fortune of visiting a biotechnology company in Boston, called SQZ Biotechnologies, that is developing a therapy to treat specific types of anal cancer and other HPV16-positive cancers, and speaking to the entire company. To say that I was awestruck is an understatement. Imagine this former nurse talking to some of the finest scientific minds around, and having those individuals tell me how impactful my words were on the work they do every day. Imagine that.

I am out there evangelizing for this “below the belt” cancer that still carries with it an unfortunate stigma, which I hope to change. People need to be educated. Physicians need to screen their patients, so they can get an early diagnosis and treatment.

My blog, I Have Butt What, and my book, If You’re not Laughing; You’re Dying, are recent efforts to continue the dialogue around anal cancer. My goal is to shatter the stigma and loneliness that often accompanies anal cancer. I am alive, talking, and cannot shut up. I won’t shut up.

Editor’s note: We are sad to report that Michele Longabaugh, age 57, loving wife, mother, grandmother, and friend, passed away on June 10, 2020, of reasons not related to cancer. Michele was a tireless and passionate advocate for all patients with cancer and was always willing to share her incredible story. Her voice will never be forgotten.

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Last modified: March 10, 2022

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