Living Proof

Over the past two weeks LBBC’s newest blogger Laura Renegar, who was diagnosed with triple-negative breast cancer in 2011, has shared her story with our readers.  Part One, “Yes darlin’,it does…” was featured on March 3 and Part Two, “Hit It Hard and Hit it Fast” was featured on March 13.  In this week’s entry, Laura speaks candidly about her belief in the importance of clinical trials for women diagnosed with TNBC. 

crop3Before I was diagnosed with Triple Negative Breast Cancer, I was perusing my pathology report from my core biopsy. Somehow, since of course I am not a doctor, some of the wording on this report made me think that I was going to be diagnosed with Her2Neu breast cancer. Since I had friends who already had that diagnosis I was told, several times, to watch the movie Living Proof. So of course, my husband and I watched the movie on Netflix within days. We thought the movie was extremely informative regarding the process of clinical trials and how the process is not only lengthy, it is frustrating for the researchers and doctors involved, and the trials can be very disappointing.

After my tumor was removed and it was sliced and diced hundreds of times, I was then diagnosed with triple negative breast cancer. When my oncologist and I had our second meeting, the meeting that laid out my treatment path and my complete diagnosis, I mentioned being interested in being part of a clinical trial. “You are not a candidate” he said. That was the end of that discussion. He wanted to discuss what was going to happen with me; the when, the how, and then he explained the serious diagnosis of TNBC. I was lucky because my lymph nodes were clear, the invasive part of my tumor was 1 cm and the rest of my 4 cm tumor was insitu breast cancer, even though I had the brca2 gene mutation, he thought my diagnosis, and prognosis, were good. Didn’t he realize that I wanted to be part of a clinical trial so I could not only receive the customary standard of care, but I wanted to be in on the cutting edge of a clinical trial, a breakthrough for targeted therapy for TNBC?! Wasn’t he listening? This would be my way of knowing that “I am in a little bit more control” because I am being proactive and getting into something that is moving forward in research and testing. I thought I knew something about clinical trials because I watched that movie, and it was based on a true story, but just because you watch a movie about something, does not nearly cover all of the aspects of what you are dealing with.

At that time the most promising clinical trial that was being tested was referred to as a PARP Inhibitor:
PARP stands for Poly (ADP)-ribose polymerase. This pathway is another communication the body uses to block the development of cancer cells, PARP helps a body repair it’s DNA. But cancer cells themselves use PARP, causing more DNA damage and making the cancer cells especially resistant to therapy. Researchers were (are) analyzing how PARP inhibitors may interfere with the cancer cell’s ability to repair its DNA. Used in conjunction with chemotherapy these inhibitors may ultimately treat metastatic TNBC, although research has shown mixed results of the inhibitors’ effectiveness. (From the book Surviving Triple Negative Breast Cancer).

Sadly, I was never able to get into a clinical trial, but I really wanted to. If you are diagnosed with TNBC and want to get into a clinical trial, ask your doctors and do your research!

I don’t always take no for an answer, but dealing with my surgeries and treatments was taking most of my time and energy so I put my disappointment for not being able to be in a clinical trial aside. Within a few weeks I was asked to be in a breast cancer research study through the University of North Carolina in Chapel Hill. It is a long term study that started with a very extensive questionnaire by a nurse that came to my house to take a blood sample, a saliva sample, and do a two hour survey. I continue to answer health surveys every six months for this study and they request all of my health records each time I fill out these forms. Now I feel like I am actively helping to find a cure, or at least a reason, why cancer is becoming so prevalent, even though it is not a clinical trial. Studies, trials, and research all are so very important so if you are willing, or able, to participate, please consider it.

I truly believe that clinical trials are very important in helping us find a targeted therapy for TNBC. I hope, and pray, that someday one of these trials turns out to be as successful, and save as many lives, as Herceptin has done for HER2neu positive breast cancer.

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blog, too!

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Like what you’ve read?  Make a donation to LBBC today!

 

3 Responses to “Living Proof”

  1. PinkKitchen (@PinkKitchen) Says:

    I agree, Laura. Knowledge is power! I would also include all of my sisters to find out all you can about nutrition and exercise as they relate to cancer. We need all the tools in our arsenal that we can get!

  2. Article Three of Three – Living Proof | laurarenegar Says:

    [...] http://livingbeyondbc.wordpress.com/2013/03/20/living-proof [...]

  3. Shannon Says:

    Great story Laura on the power we hold when we (can) participate in clinical trials. I believe they are a terrific way to “pay it forward”. Of course, not for everyone (personally and in terms of qualifications) but I am 10 years out and continue to look for ways I, and others, can contribute back in trials. Thanks for reminding me to keep my eyes and ears open!!!

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