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The History of Hope for Two…The Pregnant with Cancer Network

April 2015 Vol 1 No 2
Lorene Barulich, RN, MSN, OCN
Cancer Care Coordinator, Buffalo Medical Group

On December 1, 1995, halfway through the pregnancy with her third child, Patty Murray, a founder and the current Board Chairwoman, was diagnosed with advanced stage breast cancer. Her excitement and anticipation were crushed. She was suddenly filled with fear and confusion, unsure of the options available to her—whether she could continue with the pregnancy or if she would be forced to terminate the pregnancy. She found that when she sought her doctors’ advice, they had very little experience to offer. She went to the American Cancer Society, but like the doctors, they could provide no guidance for Patty’s particular situation.

On blind faith, Patty decided to continue the pregnancy while undergoing major surgery and chemotherapy. The oncologist supported her decision, while the surgeon encouraged Patty to terminate the pregnancy with the concern that her chances of survival would diminish if she kept the baby. Patty’s obstetrician deferred to the oncologist on the condition that if at any time her health were endangered, he too would recommend termination. The next months were filled with visits to the doctor for chemotherapy and check-ups: the obstetrician once a week, an ultrasound to check the health of the baby once a week, and the oncologist once or twice a week for chemotherapy. She was the bald pregnant lady at the obstetrician and the young woman with the big belly at the oncologist. She lived those months with the paralyzing fear that she had made a terrible decision—fear that her baby would be born with deformities, fear that her cancer would spread to her bones, and fear that this child, as well as her 2 older children, would be left without a mother.

The treatments were so exhausting that Patty feared she would be unable to keep up enough strength for the baby to survive. She was unable to take the anti-nausea drugs prescribed to most cancer patients so she was required to drink weight supplements in order to keep the weight on. Nausea is a side effect of chemotherapy, but Patty also feared that it could be a sign that the pregnancy was not going well and she would miscarry. And there were concerns related to her husband: his apprehension of losing his wife and of raising the children on his own. The day before her lumpectomy, as she rubbed her small stomach with her baby inside, was spent writing her will instead of setting up the baby’s room.

During this time of immense uncertainty and confusion, Patty was introduced to 2 women who had successfully undergone cancer treatments while pregnant—Mary Rose and Lisa. These women were able to provide the emotional support and understanding that Patty was unable to get anywhere else—not from her doctors, family members, or the volunteers at the American Cancer Society. These 2 women understood the dread, consternation, and isolation she was experiencing. They helped to relieve the fear about the effects the treatment would have on her child. Their children were born healthy and were developing at a normal rate. At a time of constant uncertainty and apprehension, Mary Rose and Lisa offered a sense of stability and hope. Patty’s son was born in March 1996, and they were there for her the whole time. They remained in her life until the baby was born, but once Patty’s treatments ended in November 1996 (she had gone on to have 5 more months of chemotherapy after her son Patrick was born and then 5½ weeks of radiation), the women fell out of touch and called each other only every few months.

During the summer of 1997, 8 months after the completion of her treatments, Patty began to experience debilitating panic attacks. She met with a counselor who diagnosed her with post-traumatic stress disorder and, after 4 sessions, encouraged her to go out and help others. Unbeknownst to Patty, during the time the 3 cancer survivors were out of touch, Mary Rose had written a short paragraph that would be a sidebar to a major article in the May 1997 issue of Redbook Magazine about her experience with pregnancy and cancer. In response to the article, Redbook received 12 letters from women across the country who also battled cancer while pregnant. When the 3 women finally met again face-to-face in September 1997, Mary Rose showed them the article and the responses. Patty, Mary Rose, and Lisa recognized that there were women who needed a support network similar to what they had provided for each other. They felt strongly that they could be that support.

Patty spent the next few weeks investigating the possible existence of national or international groups that already filled the need; but upon finding nothing, they decided to incorporate. They paid the filing fees themselves, and in October 1997 the Pregnant with Cancer Support Group Inc. was born! A newsletter was written, and the 3 of them recruited the women who responded to Mary Rose’s article, together becoming the first group of Volunteer Support Women.

Their mission has always been to provide women diagnosed with cancer while pregnant with information, support, and hope—all the things that the founding members were seeking when they were first diagnosed. Their vision continues to be to offer resources and peer-to-peer counseling to all pregnant women diagnosed with cancer. The guiding principles of the organization are to serve women of all socioeconomic, ethnic, and religious backgrounds worldwide; to remove barriers to women obtaining complete and accurate information about their options for dealing with cancer while pregnant; and to respect and support every woman’s personal decisions without judgment. From its founding until 2004, the organization operated with only a working board and no employees, with the mainstay to the support network made up of volunteers—women who survived cancer while pregnant.

More than 17 years later, Hope for Two now has a Board of Directors consisting of 12 members, including a licensed social worker who is a Cancer Counselor, an oncology nurse navigator, and 2 cancer survivors. In addition, the organization has enlisted the assistance of a volunteer Advisory Board, including Dr Elyce Cardonick from Philadelphia who is currently conducting a study on the affects of cancer treatment on babies and the survival rates of the women treated as compared to nonpregnant women. Dr Cardonick acts as a liaison between newly diagnosed patients, their obstetrician, and their oncologist to ensure that all those involved in the case have access to the best information for treatment and scans—the same information Patty desperately needed when she was diagnosed.

The organization has 2 part-time staff, each working approximately 5 to 10 hours per week; and Patty Murray currently volunteers as the acting Executive Director. They have trained nearly 400 Volunteer Support Women from all over the world representing 27 countries including Australia, England, Russia, Italy, Canada, Jordan, China, South Africa, and India. To date they have counseled over 950 women. Their website has approximately 1000 unique visitors each month, providing countless others with the information, hope, and resources they need.

Of the women receiving support, 70% have been diagnosed with breast cancer, but 28 types of cancer have been represented. Women find it important to speak with another woman who has had the same type of cancer and stage; Hope for Two provides that support. Also, diagnosing cancer when a woman is pregnant is especially difficult, as is treating a pregnant patient. Radiation is generally not an option, nor is a bone scan to find out if the cancer has spread to her bones. However, certain other staging scans are an option. Typically, many chemotherapy treatments and most major surgeries are deemed safe after the first trimester. Much of this information can be accessed directly on the Hope for Two website or by consulting with certain physicians and/or websites that are referenced on the site.

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