Research & Clinical Trials, We all need to help!

Being BRCA2 positive has been challenging for the entire family. After figuring out my plan of action as far as surgeries, lifestyle changes, and surveillance, I was left with a strong feeling of what else can I do to help other families and contribute to medical advancement. I hope this blog is helping other families navigate through the murky waters, but what about medical advancement?

From my personal experience of looking into this, there are clinical trials that are specific to the type of cancer you have, the stage of your cancer, and what drugs/therapies you have already had. Because I am a previvor, these don’t apply to me, but could be important for others. The patient advocacy group FORCE, http://www.facingourrisk.org/, is a very valuable link to many programs/studies for patients that are ready to try new drugs and/or treatments to help with their cancer diagnosis.

There are many organizations that have ongoing studies for research, but a few that I am familiar with include, Basser Center for  Research at Penn Medicine https://www.pennmedicine.org, Moffitt Cancer Center in FL, https://moffitt.org/, and The Gilda Radner Hereditary Cancer Program at Cedar Sinai in CA,  http://www.cedars-sinai.edu/. I donate my DNA every year, by blood or saliva, and they use it for research. They also take family members DNA even if they have tested negative, and have ongoing studies for this group as well. We are unique; our DNA contains a mutation in BRCA, but could also unlock secrets that are important for our future or the future of others. It is so important for me to contribute to as many studies as possible to help the medical community make advances to help prevent HBOC.

There is also research through surveys. They cover your family history of cancer, lifestyles choices, mental perception after hysterectomy (I failed that one) and emotional surveys that help the professionals determine the type of emotional support that families may need after a diagnosis or during treatment. Some even provide you with incentives, as a thank you for your participation. They usually follow up every year and new ones are posted all the time. They can take anywhere from 15 minutes to an hour. Everyone can spare an hour for a good cause, right?

We, BRCA positive patients, are again special; our DNA has been discovered to contain a mutation. There are so many undiagnosed people out there who don’t even know they carry this mutation. We know and I feel we need to share, to help others. If the number of participants increased in all the medical research, we would be increasing the sample size and have a better chance to have more statistically significant results. This helps our families and all the future generations that have to deal with a BRCA positive result. Saving lives is the goal here for everyone; I feel better knowing that I’m doing everything possible to help save a life!



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