So That Mothers May Raise Their Children:
Patti O'Brien's Indefatigable Fight Against Breast Cancer

By Michelle A.L. Singer

Dr. Patti O'Brien considers herself "old news," and is not one to seek the limelight. But it can't be avoided: Her story is compelling and her twelve years of breast cancer survivorship encouraging. A decade after her recovery, she continues to earn attention both for her professional work and her unflagging advocacy efforts. Her dedication shepherding others through the places she has been touches people and puts her in the spotlight again and again.

O'Brien received her medical degree from the University of Vermont (UVM) College of Medicine and did her residency in internal medicine at New Haven, Connecticut's Hospital of Saint Raphael. For years, she was a primary care provider at Aesculapius Medical Center in South Burlington, Vermont before she discovered the cancer that changed her life's course. O'Brien was diagnosed with breast cancer in 1996 at the age of 43.

Her current professional focus is lymphedema and cancer survivorship education at Fletcher Allen Health Care (FAHC). Lymphedema is a complication of the removal of the lymph nodes near the arm pit, a common place for breast cancer to spread, something O'Brien herself suffers from. When the lymph nodes are removed, swelling occurs as a result of lymphatic fluid blockage. O'Brien worked with other providers to begin an interdisciplinary clinic for lymphedema care at Fletcher Allen after receiving a scholarship to study treatment techniques in Germany. She now teaches others the techniques she learned part-time, so that she can lend her considerable medical and personal experience to breast cancer education and advocacy.

In Vermont, 485 women will be diagnosed with breast cancer this year, and 90 percent of them will survive it for at least five years, according to O'Brien. But, she continues, "We still do not have cures for all the women diagnosed with [it]. That means that about 95 women in Vermont will pass away from complications related to their breast cancer disease. Some women with metastatic disease will live a very long active life; there are new types of medication that make this prolonged treatment much easier to cope with. Look at Elizabeth Edwards, she is right out there being a working public mom and an inspiration to us all.

"Some women delay coming in for diagnosis and treatment of their disease due to fear, and they may have very advanced disease at the time of presentation and may not live long afterward. But this is extremely rare these days," O'Brien says. "The good news is, if women come in and get diagnosed - even if it is metastatic at the time of diagnosis - then there are many more treatment options to talk with them about than we had just five years ago."

O'Brien sits on the grant committee of the Susan G. Komen for the Cure Vermont-New Hampshire affiliate, and helped to start the Stowe Weekend of Hope, an annual event that celebrates survivorship. She and other survivors also helped create the Emergency Fund, formerly run by volunteer cancer survivors and now overseen by the Cancer Patient Support Program, which provides financial assistance to women with breast cancer who cannot cover non-medical needs. O'Brien also serves on the Vermont Cancer Network board and is the co-chair of the annual Breast Cancer Conference, now in its tenth year (see sidebar).

All this advocacy was born out of her own experience of breast cancer, a tale that is as harrowing as it is inspiring. The average age at which women are diagnosed with breast cancer is 64, much later than 43, and 80 percent of women who get it have no family history. O'Brien knew long before the cancer arrived that it was coming: as a DES baby (her mother took diethylstilbestrol, a synthetic hormone for preventing miscarriage), she knew from animal models that breast cancer was a strong possibility. She got mammograms every year when the recommendation was every other year. She did regular self exams. She was a physician who had access to the most current information.

Even though she was a doctor and her mother a nurse, O'Brien didn't discover until after she was diagnosed that her own grandmother had died of breast cancer. "Breast cancer used to be something people just did not talk about openly in an Irish Catholic family," she says. She credits the Susan G. Komen Foundation for bringing breast cancer "out of the closet." She believes the foundation has saved lives by just giving women the knowledge of the simple tools they can use to save their lives. "Komen's first big success was just to get it out of the closet by waving those pink ribbons everywhere and making breast cancer a topic okay to actually talk about."

The Challenge of Her Life

When O'Brien found a lump in her breast, it was painful and changed with her menstrual cycle; the hope was that it was just a cyst. She was preparing for a vacation to Disney World with her family, so she called a classmate from the Surgical Breast Care Center and, after seeing her patients for the day, went over to her friend's office to drain the cyst and relieve the discomfort. When the fluid aspirated was bloody, they both knew that it was bad news. Just minutes later, as they looked at a sample of the blood on a slide under a microscope, they knew it was cancer. In five minutes, her life had changed course. The vacation plans for Disney World were postponed.

O'Brien wasn't totally shocked, but she assumed that because her last mammogram was clear she was in an early stage of breast cancer. She went home, made dinner, put the kids to bed, and then told her husband. It wasn't until her surgical pathology report came back that she found out she actually had a locally advanced stage of cancer, stage 3, much more serious than she had suspected.

In 1998, Fletcher Allen and UVM's Vermont Cancer Center put together a video of the stories of seven female breast cancer survivors called Personal Perspectives on Breast Cancer. O'Brien was one of them. She says in the video, "Getting through the initial part of the diagnosis, making decisions about treatment, was the hardest thing I'd ever had to do."

One aspect of the decision-making, however, took almost no deliberation. Just days after receiving her initial biopsy report, O'Brien went into the operation room for a double mastectomy, the removal of both breasts, even though only one of them was found to have cancer. "It took all of three minutes for me to make the choice to remove the other breast," she says. Her surgeon asked her, "Are you sure? Are you in panic mode?" This was not standard procedure, but O'Brien knew what she wanted. "I wanted to get my breast cancer experience behind me, and if I survived this round of it, I never wanted to have to deal with it again. For me a prophylactic mastectomy just made sense. That is not the choice other women would make. Each woman has to make her own choices in this. We as health care providers need to give them good information and options, but only they can make this kind of choice about their body."

O'Brien's approach to cancer was to "throw the book at it." When faced with the possibility of not being able to raise her own children, she wanted to do everything possible, even risky and experimental treatments. "My motivation has always been about being around to raise my children," says O'Brien. Her children were very young at this point and she prayed, "Please, just let me get my children through elementary school."

During the years of treatment after her double mastectomy, she volunteered for every clinical trial under the sun. Chemotherapy, high-dose chemotherapy, a bone marrow transplant, support meetings with a UVM professor of psychology doing research on coping with breast cancer, experimental interleukin - two injections she gave herself daily in the abdomen. "Clinical trials are very important to participate in to advance our understanding of cancer and help find cures," she says.

When O'Brien was preparing to have her bone marrow transplant, she made sure she had every last conversation with her husband about wills and remarrying. She wrote each of her children a letter in case she didn't live through it. I asked her if they had read the letters. "No," she replied. "They know about them but haven't read them yet. I have them in a box with the letters I wrote to them before they were born."

During the transplant O'Brien describes getting neutropenic infections, which occur when a patient has very few white blood cells to fight infections, a typical side effect of chemotherapy, and worried that she was not going to make it through the procedure. She almost didn't make it through problems with infections and a delay getting her stem cells working again. But, she says, she understood in that brief time that it wasn't her time to die yet. She still had work to do. As her kids grew older, her prayers changed from hoping to get them through elementary school to getting them through high school. Last fall, her youngest graduated from high school. "I still don't make long-term goals," says O'Brien, "But I do make short-term ones."

Unfinished Business

O'Brien's unfinished work also seems to be shepherding others through the same valleys she herself has walked. In 1996, she helped to start what has now become an annual event: the Breast Cancer Conference, offered for its 10th year on November 3 in Burlington. At its inception, the conference aimed to provide basic breast cancer education for the general public and quality information about breast health issues and hosted about 300 attendants.

Now, the goal is to reach a wide audience and provide current, comprehensive resources on breast health for the community-young women learning about breast exams and risk factors, older women with a family history, women newly diagnosed, women undergoing treatment, women dealing with "survivor issues" like an early introduction to menopause, women with metastatic breast cancer, and of course family members, health care practitioners, support givers and friends who are learning what they can possibly say. This is a tall order to fill. Yet, it is the Conference's goal that, "every attendee at the Conference is able to find the information, expertise and support they seek," and they do everything in their power to get it done.

Each year, they use the entire Sheraton Conference Center in South Burlington - all the conference rooms, the lobby, parking lot, and even the pool. The event is largely educational, free, and open to anyone interested in learning about the various stages and issues surrounding breast cancer, and provides important opportunities for connecting and sharing experiences. Topics also include techniques for relaxation, coping, and living better.

Embedded within the conference is a retreat for women with Stage IV Breast Cancer. Underwritten by the Vermont-New Hampshire Affiliate of the Susan G. Komen Foundation, meals, overnight accommodations and a day of inspiration, sisterhood and care are provided to women with metastatic cancer. If participants register early enough, they will provide every possible assistance they can to get women to this nurturing and rewarding day.

O'Brien has lost many of her fellow companions during her journey with cancer, and many previous volunteers have passed away over the past ten years. Yet she herself is a survivor of 12 years. There is no accounting for this. Though efforts continue, money is diligently raised and drugs experimented with, there is still no "cure" and still much debate about causes and treatments. We humans with our linear brains want to understand why.

When I asked O'Brien why she thinks she is alive, while some of her friends (who had much better initial prognoses) are not, she could only shrug her shoulders and say in a low voice that she was lucky. "They were great, wonderful friends who also wanted to stay in this world and raise their children. I have no good answer for you. Cancer is complex and it does not follow rules. I have tried not to use denial or avoidance as tools to keep hanging in there, but when it comes right down to it, I have no idea why I am alive and very dear friends are not."

Maybe it's simply because this is what Patti O'Brien is meant to do. The work that she pours into the Breast Cancer Conference every year to educate and support the myriad people who are touched by breast cancer, from learning about their risk factors to managing aggressive treatments, has meant a lot to a lot of people over the years. In her letter to participants at the 9th Annual Conference, she said, "I have seen how deeply cancer touches the lives of far too many women and the many ramifications this has on our communities. I volunteer to work on this each year in honor of the many mothers that I have come to know who have not been able to raise their children, and in tribute to their daughters."

Michelle A.L. Singer is a freelance writer living in East Montpelier.