Participating in a clinical trial doesn't necessarily mean you will be stared at like a specimen or that the end is near.
"People think 'oh I am a guinea pig' - you're not a guinea pig. People may think that trials are just the last resort and only for people who have run out of options – that is certainly not true," said Laura Esserman, MD, Director, Carol Frank Breast Care Center.
Elly Cohen knows she benefited from clinical trials. She survived her breast cancer diagnosis. Her mother did not.
"I know the treatments that were available to me were not available to her 30 years ago, so I am very cognizant and sensitive to the importance of research," said Cohen.
Yet she didn't participate in any trials when she was suffering from the cancer. No one asked her to. The Society for Women's Health Research in Washington D.C. says that's one of the reasons only nine percent of women have ever participated in a medical research study. Researchers also think women are nervous about the unknown. That's why they created the website http://www.womancando.org -- to help clear up questions and encourage women to sign up.
"Researchers really regard the people who participate in their studies as the true heroes of medical research. This is extremely important," said Sherry Marts, Society for Women's Health Research.
Doctors at UCSF are experiencing, first hand, the lack of women volunteers. They have about 30 trials going on right now for women with breast cancer. Not one of those trials is full.
"The trials represent the way things might be done in the future. You can imagine when we were comparing mastectomy to lumpectomy. If the women didn't participate in those trials we would still be doing radical mastectomies," said Marts.
Some of the trials are simple and are looking for an answer most cancer patients want. Like the one looking at the effects of chemotherapy on the brain. Just about every cancer patient talks about chemo-brain.
"I felt like I wasn't connecting the dots like I used to," said Cohen.
So UCSF has created a trial to look into the possibility of chemo brain. Their findings could impact the next generation of drugs. They just need to study the brains of about 40 women on chemo. But only five have signed up.
"A clinical trial isn't for everyone and I'm not saying everyone has to be in one. I just think everyone should say 'what are the possible trials?'" said Marts.
So UCSF has also created a website on the topic - www.breastcancertrials.org which stands for breast cancer trials - will help connect patients to trials that apply to them. Elly Cohen spent nine years creating the site and she plans to check it regularly.
"And UCSF is starting a survivorship clinic and I will participate in those trials that are relevant to myself," said Cohen.
UCSF'S website has just had soft opening-- you can check out the site but they're not planning on a national launch until October.
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