Self-Advocacy Helped Her Beat Stomach Cancer Odds
It took more than a year of determined self-advocacy before Branny Carrasco’s concerns were confirmed in a gastric (also known as stomach) cancer diagnosis.
In 2012, the active 31-year-old mother of two small boys noticed something was off. The former U.S. Navy hospital corpsman was used to a busy life when she began feeling constantly fatigued. At first, she was diagnosed with severe anemia and received a blood transfusion. The next day, she fainted at the top of her stairs and began vomiting blood.
She was diagnosed with a bleeding ulcer (although an endoscopy didn’t find one). A test revealed she was infected with Helicobacter pylori (H. pylori) bacteria, known to cause ulcers and in some cases, gastric cancer. She was treated with antibiotics, but she continued to feel lethargic, nauseous, and have heartburn. She told her gastroenterologist that she was concerned about stomach cancer. He told her not to worry — gastric cancer isn’t common in the U.S., and Carrasco was too young to get it.
But while serving with the Navy, Carrasco had spent four years living in Japan, a country with higher rates of the H. pylori infection and stomach cancer.
Over the course of more than a year, the Northern California resident saw three specialists and each dismissed her concerns. She was diagnosed with chronic stress.
Then, in November 2013, she woke up one morning with a throbbing headache. Her whole body ached in a way that she knew something was acutely wrong. She went to the emergency room, where doctors found she was bleeding internally. Another endoscopy was performed, which found the cancer Carrasco feared she had had all along. By then it had eaten a small hole in her stomach and spread to nearby lymph nodes.
She was diagnosed with stage IIIB gastric cancer. Within weeks she had surgery to remove 80 percent of her stomach, followed by chemotherapy and radiation.
That’s when the fight of her life began, but also when she found her voice as an advocate raising awareness about the disease. She has become deeply involved with Debbie’s Dream Foundation (DDF), a non-profit organization dedicated to providing education and support to patients, families, and caregivers, and advancing funding for research, with the ultimate goal of curing stomach cancer. Branny, now 35, and her husband are co-founders of the San Francisco branch of DDF.
Health Central (HC): How did you get involved with advocacy and raising awareness about gastric cancer?
Carrasco: As soon as I found out I had stomach cancer, I reached out to support groups online. That’s where Debbie’s Dream Foundation got in touch with me. One of the representatives from DDF emailed me and said they’d like to learn more about my story. So I gave them my history and background and they mentioned they had an upcoming advocacy day on Capitol Hill. I didn’t even hesitate, I said “I’ll go!”
I saw this as my opportunity to make my voice heard. I was brushed off by all these specialists for over a year and I thought, there is such a lack of knowledge about H. pylori and stomach cancer in this country. The situation was frustrating because I fought so hard to get diagnosed and then had to go through such harsh treatments. But when I went to DDF events and I saw all these survivors, and I thought, “Ok, I have a chance, I am going to be part of that 14 percent [of survivors with her cancer type].” I started to feel more positive, and I had a purpose.
HC: Where are you now with your treatment?
Carrasco: I completed chemo and radiation in July 2014 and did well for about three years. I had a routine CT scan in November 2016 and everything came back normal. In January I started having abnormal bleeding with my cycle and went in for another scan. I was diagnosed with a reoccurrence; the cancer had metastasized to my ovaries. In just those few months, my ovaries had turned into apple-sized tumors. At that point, I was diagnosed with stage 4 cancer. I wasn’t given much hope. I was told if chemotherapy didn’t work, I had less than six months to live, and chemo was the only option given to me.
I wanted to find a surgeon who would do a procedure called hyperthermic intraperitoneal chemotherapy (HIPEC). It’s considered experimental and the benefits often don’t outweigh the risk, but I felt it was my best option. Eventually I found a doctor in San Diego who was willing to do it. As part of HIPEC, they cut me open, took out the tumors and my ovaries and did a heated chemotherapy infusion in my abdomen. They call it “shake and bake,” because they rotate you so the chemo gets to all the nooks and crannies. The heat makes it more effective, and it’s supposed to be less toxic then the intravenous form of chemo. Then they drain the chemo out of you and close you up.
But before I did the procedure, I spoke to several patients who had HIPEC and they all experienced a lot of complications and had really difficult recoveries. It was difficult to feel confident that things were going to be OK. I questioned what my quality of life would be like and the quality of life for my family. I was also worried because I had to be off of chemo for six weeks prior to the procedure, and chemo is what had kept my tumors in check. I basically planned my own funeral, wrote out my living will and wishes. It was the most difficult thing I had to deal with, facing my own mortality again.
I ended up having the surgery in July and it went as ideally as possible. They didn’t find any more metastasis. I was out of hospital in four days and I haven’t had any complications. I’m not considered in remission but there is no measureable disease in my body. I’m at extremely high risk for reoccurrence, and my doctors have said that any treatment I have is to prolong my life. I’ll never be cured of it. That’s a very difficult thing to hear. But I have outlived the less-than-six-months prognosis they gave me. And I’m grateful things have gone as well as they have.
HC: Are there any specific areas you have focused on in your advocacy? Why is it so important to you to be involved?
Carrasco: The year my husband and I joined DDF and took part in the advocacy day on Capitol Hill, stomach cancer got added to a list of a cancers that affect the military. Military personnel are at higher risk of coming into contact with H. pylori because of the countries and the conditions we are in. There is a higher exposure.
I feel like I’ve made a change through DDF. I hear it a lot, especially from people at stage 4. We have a 4 percent chance of survival. When in you’re in a situation where the odds are against you, you search for any bit of hope and for some reason I’m still here. And when I’m having one of those days when I just don’t want to do chemo, I look to Debbie and her story for inspiration. Her energy amazes me. I want to give that in return to our community.
HC: You have talked a lot about feeling frustrated by your experiences with doctors. What advice would you give to others about self-advocacy?
Carrasco: Be your own advocate. If you feel something isn’t right, speak up, question it. Doctors are experts in their field, but you are an expert in your own body. I believe being very assertive in communicating my concerns to doctors has helped me beat the odds. Stomach cancer is mainly asymptotic. It’s easy to attribute the symptoms to gastroesophageal reflux disease (GERD), irritable bowel syndrome, or different digestive disorders. By the time it’s discovered, it’s often at [an advanced stage].
After I completed my treatment in 2014, I scheduled a meeting on behalf of DDF with the first GI [gastroenterologist] specialist I had seen. I told him, “I don’t know if you remember me, you treated me for an H. pylori infection and I had spent some time asking you about stomach cancer... Well, I did have stomach cancer.”
His jaw literally dropped, and he said, “I am so sorry.” I told him, “I’m not here for an apology. But I want you to take my experience into account so that next time you have someone like me, with my age, who may not look as sick as you think someone with stomach cancer should look like, you won’t ignore the symptoms.”
HC: What goals have you set for yourself now and in the future?
Carrasco: One of my recent goals is to do more traveling with my kids (now 7 and 10 years old). We always wanted to take to them Japan, where my husband and I met. We loved it there and I want to take them there and experience it with them. The goal is to go next year during spring break for two weeks.
My focus is to make as many beautiful memories with them as I can. I try and cherish the moments we have now and focus on my family. And I want to continue working with DDF as long as possible.