5 things to know about Breast Cancer Clinical Trials

You find out you have breast cancer. You’re working with your oncology team to figure out the best treatment pathways for your cancer, and your long-term survival. If you’re early stage – Stage I or Stage II – you might think that you should just do the standard treatment protocol of surgery, radiation, and chemotherapy. Clinical trials might not seem like something you need to explore in early stage disease. I’d like to make a case that clinical trials should be on your treatment decision list, no matter your cancer’s staging. Here are my 5 reasons why.

#1: Breast cancer is many diseases, not just one

Is your tumor driven by hormones, by proteins, by neither, by both? What genetic markers individualize your cancer’s mutation? Knowing these two things open treatment pathways, but science is only just now starting to get a handle on the promise of precision medicine for cancer. Participating in a clinical trial after a breast cancer diagnosis helps you, and could help countless other women and men facing a diagnosis with similar tumor characteristics. “The Life You Save May Be Your Own” is not just the title of a great Flannery O’Connor short story, it’s my mantra when it comes to clinical trials.

#2: Questions lead to answers (also known as “scientific discoveries”)

In searching for clinical trials for your cancer, you can ask and answer a host of questions of your own, along with the clinical questions being asked by the research team running the trial. You may discover a new genetic link to your cancer that can help your family manage their own cancer risk. Your genotype might uncover risks of other types of cancer, or other conditions. You may discover that your genotype makes you a candidate for other studies, leading to more new discoveries. Your clinical trial journey could turn into the scientific version of a Russian nesting doll, with a cascading series of insights and pathways appearing to help you, and other people with cancer.

#3: Not all trials are listed in one place

ClinicalTrials.gov is a terrific resource, but the trials listed there are only those in the US. Plus, not every trial in the US is listed there.  What I am recommending is talking to your oncology team about what resources they may have that go beyond the NIH’s clinical trials database.

#4: Get your genome sequenced

Get a recommendation from your oncology team (you can start here with Cure Forward’s testing partners and process, in partnership with your oncology team), followed by a team meeting to determine what your best clinical trial options might be, based on your genome. Having the genomic data in hand will open pathways to searching for the right clinical trial for you.

#5: Manage your risk

This is a hot topic in the patient communities with members who have clinical trial experience. Read through your Informed Consent Forms carefully, and consult with an expert in health law if you feel you need help translating what’s in those forms.

If you or someone you love has recently gotten a breast cancer diagnosis, walk through these five recommendations to make sure you know all your options, and can take advantage of the opportunities that clinical trial participation offer.

The life you save may be your own.

Get started and a Cure Forward Clinical Trial Navigator will help you access active clinical trial options.

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Casey Quinlan Precision Medicine Advocate

Casey Quinlan Precision Medicine Advocate

Casey Quinlan covered her share of medical stories as a TV news field producer, then got a breast cancer diagnosis five days before Christmas in 2007. She used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy.Her speaking calendar for 2016 includes Academy Health’s National Health Policy Conference, the 7th Patient Engagement, Education and Adherence Summit, the ePharma Summit, the Genetic Alliance’s Building Trustworthiness in PCORnet meeting, and Health Datapalooza.
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