I kept thinking about ways to help other young women recently diagnosed with breast cancer so I dug up this snail mail letter from an oncologist at Dana Farber. Her specialty is breast cancer in young women.

She ran a 10-year study called Helping Ourselves, Helping Others: The Young Women’s Breast Cancer Study, which is part of the Program for Young Women with Breast Cancer at Dana Farber.

The Program for Young Woman at Dana Farber offers young women newly diagnosed with breast cancer fertility services, genetic testing, psychological support and even survivorship classes.

Survivorship classes help women address concerns that can be unique to breast cancer survivors: Early menopause and menopausal symptoms, arm lymphedema, sexual health and functioning, issues related to body image, weight management and physical activity and emotional and psychological concerns.

[ Article:  A focus on breast cancer in young women ]  

It wasn’t much of a commitment. I filled out surveys every six months for three years and then once a year for the next seven years. I also gave a blood sample and donated tissue from my tumor.

I hesitated at first because my immediate thought was: 10 years? That is a long time in my mind…. And I was not thinking 10 years ahead at the time.

I decided to participate in the study.  I could not think of a better way to help other young women. I was not thinking about how important my contribution was. It just felt good to help.

More than 1,000 women age 40 and younger participate in this study. And I was one of them.

The study investigates short and long-term disease and treatment issues as well as psychosocial concerns in young women i.e. fertility, sexual functioning and menopausal issues.

Some of the questions in the surveys were pretty straightforward–weight, exercise frequency, drinking habits, etc. Other questions were more personal–sex life, pregnancies, miscarriages.

Most of the data about breast cancer take into consideration older women–age 55 and up (post-menopausal).

There is no compelling data out there for women between ages 18 and 40. This study intends to gather it and will probably change the history of breast cancer in young women.

The other interesting fact is that it was in 1998 when the FDA approved Herceptin (trastuzumab) to treat breast cancer. This approval was limited to patients with metastatic breast cancer who had tumors that were HER2-positive.

It was in November 2006 that the FDA approved trastuzumab for use beyond the metastatic setting to include treatment of HER-2 positive breast cancer in combination with chemotherapy.

This is the treatment I received.

I was one of the first patients to get trastuzumab as part of an early stage breast cancer treatment. How was I supposed to know if the treatment was going to work? The standard of care was to get this drug for a period of one year. It still is.

There is no specific data related to the response of HER-2 positive early-stage breast cancers to trastuzumab because this drug has only been administered to patients in the last 8 years.

The Young Women study will also capture this data. Not only will this data include the response of HER-2 positive breast cancers to trastuzumab, but it will also pertain to women between the ages of 18 and 40.

I am really glad I decided to be a part of this study. Ten years seemed like an eternity at the time and today I have been a participant for 8 years. Filling out the surveys takes very little of my time and effort and the data collected will help many women with a breast cancer diagnosis in the future.

In two years we will have access to convincing data about breast cancer in young women that can help predict outcomes and categorize areas that may be open to intervention.