Fighting cancer takes you up hills, through heavy storms and deserts that seem never-ending. The smallest bit of good news can lift your spirits one day; the next day’s news can tear you apart. As primary caretakers, getting through each day was difficult. We know that for our mother, Paulette, battling stage IV anal cancer, it was tougher. We admire her strength, brightness and sheer will to enjoy life and keep laughing. Her wonderful spirit inspired us to create The HPV and Anal Cancer Foundation, a charity that serves those affected by anal cancer and the virus that causes the majority of cases, HPV.
This is our story:
We – Justine, Tristan and Camille – were raised by our beautiful mother, Paulette Isabel Crowther. Paulette was the second-oldest in a family of seven children and grew up in New Jersey. She moved to New York as a college student, became quickly immersed in the city’s vibrancy, and never left. She loved to experience art, music and New York City culture, and passed on her appreciation for all of these to each of us.
Paulette poured her energy into loving us, laughing with us and making sure we had excellent educational opportunities. Our favorite days were spent with her – walking along Manhattan’s riverfront paths, hanging out on our black-tar roof, cooking a family dinner, laughing about the happenings of our day or swimming in the river by our grandmother’s house in Rhode Island. Although we moved around New York, we were always a unit, and Paulette was our best friend.
We were confused, frustrated and scared when Paulette was diagnosed in March 2008 with stage IV anal cancer – a stigmatized but largely preventable disease. We soon learned that anal cancer receives scant focus from either the public or the medical communities even though over 5,000 people are newly diagnosed in the US every year. We asked ourselves why this had happened when she was only 51, exercised frequently and ate well. We also wondered why her cancer was not caught earlier, as she visited her doctors regularly and took a keen interest in her health.
Paulette was asymptomatic when she went to her gastroenterologist for a routine colonoscopy at the beginning of March 2008. She'd had a colonoscopy only four years earlier with negative results. According to recommendations for a woman of her age, she was ahead of the game in obtaining routine colonoscopies. Upon receiving the news of an irregular mass, however, she immediately underwent biopsies and tests that indicated the disease was advanced. Her cancer had already spread throughout her lymphatic system. The end of her testing coincided with a family trip we had planned for months. Paulette waited until the end of the trip to tell us.
We tackled her diagnosis head on. We went to doctor’s appointments prepared with a vast array of questions, which we found to be one of the few available tools for obtaining the best treatment and staying on top of her disease. We studied chemotherapy, targeted therapy options and reached out to everyone who might be able to help us find and evaluate alternative treatments for anal cancer and its symptoms.
Despite our shared determination, we often lost our way as we realized we faced a daunting challenge: the lack of information and resources dedicated to anal cancer. After the diagnosis, we scoured medical journals, bookstores and the Internet for information. We learned that anal cancer is associated with the human papillomavirus (HPV), but found little about anal cancer itself. Like many young women in their twenties, Paulette had an abnormal pap smear due to an HPV infection. Paulette was treated at the time with cryotherapy, began to have normal pap smears again and hardly thought about it afterwards. Twenty-five years later, she was diagnosed with stage IV anal cancer. The HPV infection she acquired in her twenties may have put her at risk of anal cancer many years later in her life.
In fact, HPV is responsible for 80-90% of anal cancer, and also causes cervical, vulvar, vaginal, penile, and head and neck cancers, as well as recurrent respiratory papillomatosis. With proper screening, most types of HPV-associated cancer can be prevented, including anal cancer. But for the many people who are incompletely screened, the standard of care for advanced HPV-associated cancer has hardly improved in decades. We found that the doctors, as accomplished as they were, did not have the tools to properly treat her. A non-profit – or even a medical society – solely dedicated to anal cancer did not exist. There were no experts to guide us; no fund-raising walks to participate in; no groups to support Paulette in coping with anal cancer’s associated physical, emotional and social concerns.
After a brief period of remission following the first rounds of chemotherapy, we had to 'borrow' drugs that were successful in other metastatic diseases like colorectal and breast cancer. These drugs may have slowed the cancer’s development, but only briefly.
Despite all the emotional and physical frustrations of recurrent cancer, we can count on one hand the number of times Paulette complained. She met each challenge with determination, love and her gap-toothed grin for which everyone loved her. She did not like to be called strong or brave, because she felt that she had no choice but to carry on living as she always had.
For two years, Paulette had her ups and downs, generally feeling weaker but with plenty of good moments. She remained dedicated to her job in public relations at a New York law school. She took a lifelong passion to the next level by enrolling in a Master's landscape design program in the evenings, all the while undergoing chemotherapy, working full-time and mourning the recent loss of her childhood companion and older brother, Hugh. She took as many opportunities to be with her family as her chemo regimen and busy work and school schedule would allow.
From Christmas 2009 until April 2010, Paulette experienced a steady decline in health. We did not know that she was dying, even though the research we have done since clearly indicates that she was. She was so determined, so fierce, so loving, and had bounced back so many times before, that death seemed impossible to us. But her pain grew to the point where she could no longer work, write or read.
On February 8, 2010 Paulette was admitted to the Intensive Care Unit of a New York hospital after suffering a seizure caused by one of her chemotherapy drugs. In the hospital, we struggled to get her pain medication under control, and Paulette started to recover and began to tell stories and talk again. We brought familiar and colorful fabrics, flowers and books, made funny signs and turned her room into a cozy, 24-hour home. At least one of us slept at the hospital every night.
We stopped her chemotherapy and hoped to get her out of the hospital so that we could start radiation to decrease the pain in her bones. After three weeks, Paulette returned home.
We thought if we could just get through the radiation, and manage Paulette’s pain with medication, we could get her well enough to start a new kind of therapy to save her. We even did a test of metastatic bone tissue to see if an experimental hormonal therapy would work. But we were soon back in the hospital to treat complications from the radiation. After another several weeks, we brought her home for the last time.
Paulette brought out the best in all of us, even when she was very sick. On Easter Sunday in April 2010, a hospice nurse had arrived to relieve us so we could sleep through the night. Instead of sleeping, we sat in the bedroom for hours telling her how wonderful our mom was. At one point, one of us said, 'She was so amazing. We wish you knew her.' The hospice nurse replied, 'Oh I know. She has her fiancé and her ex-husband cooking together in the kitchen. She has to be amazing.' Even in the most difficult of situations, Paulette’s love brought the most unlikely people together.
Paulette passed away at home the next day on April 5, 2010, at noon exactly, in our arms.
The Beginnings of Our Organization
On Paulette’s death bed, we swore that anal cancer and HPV-associated cancer would one day be a thing of the past. After seeing first-hand how few resources are available to anal cancer patients, caregivers and providers, we decided to start a non-profit to advocate for much needed attention to the disease, to provide services, such as support groups for caregivers and patients, and to fund research in an effort to improve the therapeutic standard of care that has remained the same for the last 30 years.
Anal cancer carries an incredibly difficult stigma. Many patients discuss the solitude they feel after being diagnosed with life-threatening anal cancer, because they are not comfortable discussing anal cancer openly for fear of judgment. Paulette did not feel secure speaking about her anal cancer outside of her close family and friends until late in her diagnosis.
Anal cancer has a good survival rate when treated early, so proper screening can mean the difference between life and death. Paulette should have been screened regularly and her cancer found before it progressed to its later stages. Studies show that women who have cervical cell abnormalities – from an abnormal pap smear to cervical cancer – are more likely to develop anal cancer.
In the US, it is standard practice for women to obtain a cervical pap smear to detect abnormal cells, usually caused by HPV, at their annual gynecological exam. They should also get a digital rectal exam (DRE) or a digital anal exam (DAE) to test for abnormalities. Unfortunately, only some practitioners administer the DRE and DAE as a part of an annual gynecological exam. For women and men who are at-risk, in additions to DAEs and DREs, it is recommended to have an anal pap smear (also called anal cytology) or high-resolution anoscopy (HRA), where available. See our Living with Anal Cancer page for more information.
In 2010, 20 million men and women in the US will be infected with HPV and 25,000 people will be diagnosed with an HPV-associated cancer. These patients and their mothers, fathers, brothers, sisters, aunts, uncles and friends will be left stumbling in the dark like we were – fighting for life (for Paulette was our life), scared and confused. They will be frustrated by the lack of knowledge among the public (and too often, the doctors), the stigma associated with the disease, and the few therapeutic options that are available to treat the cancer.
Two HPV vaccines, Gardasil and Cervarix, are now available that prevent most types of cervical cancer in women. In December 2010 the FDA expanded the indication of Gardasil to include anal cancer in both genders. Gardasil also prevents vulvar and vaginal cancer in women. We hope that awareness for the HPV vaccine increases so that no one ever has to undergo what we went through. But with the current sexually active population already largely infected, and low US vaccination rates, HPV-caused cancer rates are unlikely to decline significantly for a number of decades. The anal cancer and HPV communities will need a loud and supportive advocate for the foreseeable future.
Every cancer patient deserves resources, support and hope, including those with anal cancer. Through the HPV and Anal Cancer Foundation, we want to give other patients and their families the guidance, the information and the chance for saving a loved one’s life that we did not have.
Please help us make this mission a reality.
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