'算我进入'：转移性乳腺癌项目
“算我一个”是麻省理工学院广泛的研究所和哈佛大亚游标癌症研究所进行的转移性乳腺癌项目的口号。被计算是一个重要问题metastatic breast cancer(MBC) patients, as we currently don't know exactly how many people live with metastatic disease. (Estimates on the number of women currently living with MBC in the United States range from150,000 to 250,000.)
Making a difference
People in the MBC community want to be counted, and the Metastatic Breast Cancer Project is one way a patient can make a difference in breast cancer research. The project is collecting several types of information from participants. First, they fill out a questionnaire about their type of cancer, medicines they have taken, and their demographic data. There are sections of the questionnaire where the patient can comment on whatever factors she thinks are relevant.
Next the respondent gives permission to the researchers to contact her doctors for the biopsy and any other tissue samples that have been collected. One person told me that she has been hesitant to enroll in the project because she is concerned about having enough tissue left for her doctors to use in her treatment. However, the researchers ask for only a tiny bit of tissue and explicitly tell local doctors not to send a sample if it will not preserve enough for the patient’s records. The researchers use the tissue to run DNA and genomic tests to unlock the patterns in MBC tumors.
Finally, participants give a saliva sample so the researchers can compare their healthy DNA to the tumor’s DNA. Scientists hope that analyzing the genomic data will help them understand why some breast cancer metastasizes, and then find ways to end this disease that kills about 40,000 people annually in the United States alone. The information is kept anonymous and will be shared with other researchers studying cancer.
A strong response
Response to the project has outpaced expectations. More than 2,600 people in the United States and Canada have started the enrollment process. Being counted is important to people who often feel invisible when pink ribbon campaigns emphasize the victories of early stage survival. Metastatic breast cancer patients have often been counted as people who “beat cancer” in the five, 10 or 15 years when there was no evidence of cancer after their initial treatment, and they often resent that their metastatic state is not officially acknowledged when the cancer recurs.
MBC项目的Corrie Painter，Ph.D.在最近的博客文章中写道，“我谈到想要被计算的患者。这是一个比喻和文字陈述。他们希望他们的生命算作，他们希望他们的经历算作，但他们也希望他们的数字准确地代表，以便研究人员对有多少人有转移性乳腺癌有更好的意义。许多患者已经表明，他们希望更多的研究重点关注转移性乳腺癌，他们希望人们知道并理解转移性的手段，他们想要延长他们的生活的新疗法，他们想要生活。“
Kimberly Orsborn of Mount Vernon, Ohio, states it eloquently: “I am thrilled to be enrolled in the MBC Project As a stage 4 six-year survivor of IBC, on hospice, having run out of/given up on options, I'm hoping my DNA study might help others, even though I'll never know for sure. As a friend enthused when I told her the DNA test kit had arrived, ‘Kim, this will be your legacy!’ Indeed.”
What a legacy of hope and healing!
