Sharon Rivera was diligent with her health. She exercised, ate right, and even had two marathons under her belt. “I started exercising in my later years,” she said in a recent conversation; “I’m pretty fit and exercise is a daily routine. I brush my teeth, then run, walk, or ride a bike.”
In 2013, she was called back to the doctor’s office after her annual mammogram when a cyst was discovered, but Sharon was assured it was no big deal. “They thought it was a false alarm,” she remembered. Two years later, the same thing happened, but this time was different. “I had stopped at the store and my husband received a call from the breast center asking if I could come back in,” she recalled; “I got a sinking feeling that something was wrong, so I didn’t call them back immediately. They don’t tell you over the phone what the results are. If they call you back that’s generally not a good sign.”
Sharon instead called her OBGYN and went in to see him the next day. He told her she had a tumor in her breast and that she needed to return to the imaging center for a 3D mammogram. From that point on everything moved very quickly. “I had more imaging done, then they needed to do a biopsy,” she said; “They said I should come back the next day and that I would probably need to bring someone with me.” Upon returning, she was told she had triple negative breast cancer, a rare subtype of breast cancer that does not respond to hormone therapy or targeted treatments, so it can be particularly difficult to treat. An MRI was scheduled for later that day. “I ended up going to the mall with my girlfriend while we waited and I felt like I was in a dream,” she added; “When I went to the MRI I almost lost it. I couldn’t be still for the scan because I was crying so much.”
From there, Sharon was sent to a number of doctors who specialized in subjects she had never heard of. “I was convinced in my mind that I didn’t need chemo,” she said; “I was terrified of it, so I was looking for a doctor who would tell me what I wanted to hear.” Sharon looked all over for an alternative treatment, but in the end there was no avoiding reality. “I found an oncologist who I trusted and a surgeon at VCU.” On July 3rd, 2015, Sharon had a lumpectomy and a port for chemotherapy was inserted.
After an attempt at balloon radiation failed, Sharon was scheduled for sixteen rounds of chemo. “I really felt the side effects and after the second round I started losing my hair, but I pushed through it.” It was at round six, however, that she began experiencing neuropathy in her feet. It eventually gave way to permanent nerve damage and eventually she was taken off the treatment. “I still have nerve damage in my feet to this day,” she added. From there it was on to radiation.
The idea of a clinical trial never occured to Sharon until watching Good Morning America and hearing a doctor talk about it on television. “They were speaking about a specific trial for breast cancer patients on the show, so I picked up the phone to call them,” she recounted. Against all odds, Sharon was a match. There was only one problem: the trial was in California and she was in Richmond, Virginia. “They assured me that I would only need two or three visits, but it was still going to be expensive. A law firm here—Singleton Consulting Firm—helped me by giving me miles and points to help with hotels. My son and his wife did a GoFundMe as well.”
Calculating how much it would cost for two visits, flights, and hotels, Sharon was able to raise the money she needed, but once she arrived in California for her trial she was told she would need treatment for at least two years. “Someone in that study was from Philadelphia and told me about a trial out there, but I would need to be very aggressive about advocating for myself,” she recalled. Pennsylvania was a lot closer to home than California, so Sharon reached out and was accepted. “Today, I’m still in that particular study,” she added: “I drive four hours one way and four hours back each trip. I’ve been doing that now for two years.” Imagine if Sharon could have known and qualified for a trial in her area before traveling all the way across the country!
Clinical trial placements in general suffer from a lack of enrollment due to a number of barriers, including geographical constraints. A recent study showed that 85% of clinical trials fail to enroll enough patients to proceed and that 69% of that non-participation is due to a lack of awareness among patients regarding the trial. Sharon hopes that platforms like Ciitizen can eventually help patients match to trials in their area with better organization of data. She also believes that patient awareness regarding clinical trials shouldn’t have to come from daytime talk shows. “You’ve gotta have all your information in one place to get accepted,” she stated; “When I go to hospitals in DC, Pennsylvania and Maryland, they’re normally on the same EHR platform. Richmond is not, however; and they don’t share records.”
As for advocacy, Sharon continues to advise patients about the importance of clinical trials to their ongoing care. “We’re trying to spread the word to others,” she said; “Clinical trials are a way to make a difference for yourself and our community. Every step we’ve taken in the fight against cancer has come from these trials. We don’t have a cure, but these scientists are working to save our lives.”
As a result of her experiences, Sharon started a non-profit called Saving Pennies 4 A Cure to help patients afford some of the personal care items they need while getting treatment. “I saw firsthand the amount of money it takes with hotel rooms and transportation,” she said; “I see people scraping by, putting their co-payments on multiple cards to afford their treatment. We need to do better at matching. Even if there’s not a trial in the area, at least something close. You need to understand that patients with stage four cancer will be in treatment forever.”
When it comes to advice for current patients like herself, Sharon has some advice: “If you want to fight for something, fight to get all your records in one place,” she stated; “Some hospitals won’t give you a second opinion until they have every piece of information about you. Some of them won’t even make an appointment. And they might charge you if they have to get it for you. If you have all your information with you, it makes a huge difference in navigating your care options.”
Join Sharon and sign up with Ciitizen to take control of your health data and help advance important breast cancer research. And