A great deal of care and time is spent on addressing patient's emotional needs during the process of their breast cancer treatment, but little time is spent preparing them for their life after breast cancer. Most health care professionals are focusing instead on the newly diagnosed patient who will immediately occupy the previous patient's chair. It is perhaps even assumed that the doctors and nurses who have been involved in the patient's treatment aren't responsible for helping her re-engage in her life once treatment is supposedly behind her. The Johns Hopkins Breast Center has been conducting patient satisfaction surveys with our patients since 1994, choosing to include questions related to how patients are coping emotionally after their treatment is completed. The survey tool, available on our website, allows breast cancer survivors no matter where they were treated, to also provide feedback about their breast cancer treatment experiences. The survey results, which includes this information from non-Hopkins patients nationally, has demonstrated a consistent theme over the past 8 years--- that patients need psychological support after treatment is completed and they expect this support to come from the health care team who provided their breast cancer care.

Most patients experience some degree of "post treatment syndrome" and struggle with feelings of depression, a sense of loss, feelings of confusion, and a desire to re-engage in their lives living a healthier lifestyle physically and emotionally. Some key questions and results included in the Hopkins survey (data from 1998, % rating of "very good or excellent combined) are as follows:

How well informed were you about the psychological and social problems of breast cancer and its treatment?

Johns Hopkins: 58.5%
Elsewhere: 38.5%

How effectively were the psychological and social aspects of your breast cancer and its treatment addressed:

Johns Hopkins: 58.3%
Elsewhere: 37.0%

How well prepared were you for any of the concerns you had after breast cancer treatment was completed?

Johns Hopkins: 68.5%
Elsewhere: 46.5%

Though Johns Hopkins results were higher than the rest of the nation, these statistics pointed to a clear problem that needed to be addressed everywhere. Focused groups were held with Johns Hopkins breast cancer survivors to further investigate the issues of psychological well being after treatment. We learned that patients DO expect their doctors, nurses and social workers to assume responsibility for helping them emotionally recover from their breast cancer experience. They wanted a 2 day overnight stay Breast Cancer Survivor Retreat which would be limited to 50 participants at a time, and would be held in a setting far removed from the health care environment. Survivors who had completed their treatment in the last 6 months would be given priority for attending. The retreat had to be affordable to enable all eligible survivors to attend if desired. It should be held within an 80 miles distance to where patients live if at all possible and be a serene and peaceful setting.

Topics to be presented at the Retreat would include: Setting new life goals and values; Improving lifestyle habits including nutrition and exercise; Stress management; Coping with fear of recurrence; Differentiating between long term side effects of therapy vs possible new onset of disease; Menopausal management; Journaling; Spirituality; Yoga. There needed to be time to relax and time to have fun! Good nutritious meals as well as sinful snacks!

In June 2001, Johns Hopkins held its first Breast Cancer Survivor Retreat at Bon Secours Spiritual Center in Marriottsville Maryland, just 30 minutes from Hopkins but situated on 300 acres of serenity. The program was funded through a Komen grant enabling us to offer this 2 day overnight stay program with 11 Hopkins faculty speakers, 3 massage therapists, and all private room accommodations for free to 50 survivor participants! The theme of the retreat was the metamorphic change of monarch butterflies, with a butterfly release as the finale.

A second Survivor Retreat was held in November 2001, and funding was made possible through educational grants provided by Revival Soy, Pharmacia Oncology, www.breastcancer.org, and Colours Hair Salon. The fee for participants was nominal at $49. We invited and welcomed survivors from across the country, not limiting the retreat to just Hopkins patients. Women flew in from California, Michigan, North Carolina, Florida, and other parts of the country to attend. The theme was the fall foliage representing the metamorphic change each woman had achieved, having been a breast cancer patient to now being a breast cancer survivor who has completed treatment. As part of the closure of the program, each participant was asked to write a letter to a woman who was soon to be told that she had breast cancer. This letter was written on the back of a giant maple leaf, especially made for this purpose. The survivors were asked to write the newly diagnosed patient and help instill hope in her, give her good advice, and guide her on the beginning of her journey, since each of them had now completed their journey of treatment and were officially survivors of this disease. Each survivor read her letter aloud to the group and placed her leaf on the "tree of life and hope", which was nearly 14 feet tall, also especially made for this event. A group photo was taken of everyone sitting under the tree when it was completed. And the group was informed that after the retreat each leaf would be taken down and laminated, then given to a newly diagnosed breast cancer patient who would be undergoing their treatment soon at Johns Hopkins.

The finale to end this particular retreat included an awards ceremony , with each survivor participant receiving a pink ribbon statue award commemorating her completion of treatment and announcing to the group a goal she intends to now achieve having become a breast cancer survivor… Both retreats were profound experiences for everyone who participated, including the survivor volunteers who staffed the events with me.

Survey comments following the retreats included written feedback such as:

"I arrived feeling like a breast cancer patient and left knowing I was now a survivor."

" I gained so much by attending and can move forward in my life now."

Participants were also surveyed 6 months following their attending the retreat. Results from the first retreat have been completed and here are some of that data:

How well informed were you about the psychological and social problems caused by breast cancer and its treatment?

Before the retreat: 39%
6 months after retreat: 94%

How well informed were you about services available to you at the hospital/breast center where you received your treatment and in the community for dealing with the psychological and social problems caused by breast cancer and its treatment?

Before the retreat: 30%
6 months after reteat: 73%

How well do you feel you are psychologically adjusting to long term side effects of treatment in a positive manner?

Before the retreat: 42%
6 months after retreat: 70%

The percentage of survivor participants who felt they are now moving forward truly feeling they are survivors: 100%

The Johns Hopkins Breast Center will be holding Breast Cancer Survivor Retreats annually in the month of November, making the creation of the Tree of Life and Hope our signature event each year. As health care professionals we know the importance of continuing to help our patients after treatment has been completed. Though there is another woman newly diagnosed who occupies her treatment chair, we still must support and educate her so that she can constructively re-engage in her life, having been transformed from a patient into a survivor who has completed treatment.

For more information about Survivor Retreats you can contact Lillie Shockney at 410-614-2853 or email her at shockli@jhmi.edu or write to her at the Johns Hopkins Breast Center , 601 N Caroline Street, Room 8031A, Baltimore, MD 21287