PYNK: Breast Cancer Program for Young Women is a unique program at Sunnybrook Health Sciences Centre in Toronto, the first of its kind in Canada. It is aimed at addressing the special clinical, research, and educational needs of very young women (? age 40) with breast cancer.
The goals of PYNK are to:
- Support young women through their breast cancer journey by addressing their unique individual and family needs.
- Enable young women with breast cancer to benefit from promising new treatments aimed at 1) increasing cure rates and 2) minimizing the physical and emotional burden of their disease and its treatment.
- Advance our knowledge about prevention, screening and treatment of breast cancer for the benefit of young women of the future
- Educate the general public and physicians about risk factors and early detection of breast cancer in young women
Approximately 5% of all breast cancer patients are age 40 or younger at diagnosis. These women have unique medical and psychosocial needs. They are more likely to die of their disease than older women, and, even if they survive, are more likely to have long-term physical side effects, such as premature menopause, that impair their quality of life. These women also have a multitude of psychosocial issues to deal with that, in addition to the problems of the patient herself, often include dealing with the reaction to her illness of an immature partner/spouse, frantic parents, or terrified young children,.Single women in particular must struggle with new realities such as mastectomy, loss of fertility, and reduced options for dating and marrying. Studies show that even years after treatment is complete young breast cancer patients have much more psychological dysfunction than older survivors.
In the PYNK program, the patients and their families receive a continuum of care from the time of diagnosis through treatment and long-term follow-up. Each patient is assessed at her initial visit by the program’s nurse co-ordinator to determine the patient’s individual psychosocial needs and the needs of her family. If necessary, patients receive fast-tracked referrals to a variety of specialty programs such as fertility clinics, and genetic counseling/testing programs. The nurse acts as a “system navigator,” helping co-ordinate diagnostic tests, consultations and multimodality treatments. She is also an expert on the resources available to young women and their families such as a peer-support program, or age-appropriate reading materials for young children whose mother is getting chemotherapy. Once treatment is complete, many of the patients are followed in a clinic of young survivor peers, which is run jointly by the nurse program co-ordinator and a medical oncologist with a special interest in young women with breast cancer.
PYNK patients participate in a variety of research studies specially targeted to younger women, including a collaboration with Harvard to study the biology of breast cancer in young women of different ethnic groups; a web-based education and support program for young couples; and a group therapy course developed for survivors who have difficulty accepting their permanent body changes and/or are having problems with their sexuality. To facilitate future research studies, each patient completes detailed questionnaires about her family history of cancer as well as lifestyle and other factors considered to be possible breast cancer risk factors. Patients also complete a series of psychological questionnaires over time. Blood and tumour samples from each patient are collected and stored so that testing can be done in the future for yet unknown risk factors that might explain why these young women developed cancer, or for prognostic factors that can be correlated with recurrence rates.
The PYNK advisory board has representatives from over 20 different medical, scientific and paramedical disciplines. One of the most unique features of PYNK is the involvement of several young breast cancer survivors in the planning and ongoing development of this program.
Since the program opened in February 2008, over 150 young women have enrolled. We are now getting one to two referrals per week. Feedback from the patients and their referring doctors has been overwhelmingly positive. We’ve also been invited to speak about the unique issues facing young women with breast cancer at professional conferences, and have already presented some of our research at international scientific meetings. We’ve even been approached by an oncologist in another country who wanted to set up a similar program after reading about ours on the Internet.
PYNK is funded entirely by donations from private donors and small businesses.
PYNK ~ Breast Cancer Program for Young Women
Contact (Emily Walker):
Phone: 416-480-5000 ext. 7938
Fax: 416-480-6179
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