Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate.
In her early twenties, Andrea became the legal guardian for her eight-year-old sister, Adrienne. Their lives turned upside down when at age fifteen, Adrienne was diagnosed with stage four liver cancer (hepatocellular carcinoma).
Adrienne had seemed fine. She had been experiencing some acid reflux, which Andrea assumed was just from what Adrienne had been eating. She also had some right shoulder pain and Andrea had brought her to her pediatrician to look at it.
Two weeks after that appointment, Adrienne suddenly started having breathing issues. Andrea took her back to the pediatrician but they were immediately sent to the ER. After a CT scan revealed tumors in her liver and lungs, Adrienne was rushed to the Children’s Hospital Los Angeles (CHLA).
They had no way of knowing that Adrienne’s shoulder pain was caused by nerves that go from the liver to the right shoulder and no way of knowing that her difficulty breathing was caused by her swollen liver pressing on her diaphragm.
Liver cancer is largely asymptomatic because the liver only has pain receptors on its surfaces. The organ itself does not contain any pain nerves. Many people, like Adrienne, only feel pain when the liver has become so swollen that it puts pressure on other organs in the body. The symptoms that do appear are often after the cancer is in its later stages and are ambiguous enough that, as in Adrienne’s case, they are only recognized as symptoms retrospectively.
“Everything changed so quickly. She was fine the day before and then in a matter of six hours she was admitted to the hospital.” –Andrea
Liver cancer has a number of potential causes: viral (hepatitis B and C), lifestyle (obesity and alcoholism), and environmental (not as common in the US).
Adrienne was an otherwise healthy female who had never been outside of the country. They did not know until the tumors were found that she had been living with chronic hepatitis B and C, contracted from her mother during childbirth.
Andrea referred to hepatitis as a “silent killer” because there are typically no symptoms. Her sister was born in 1986, before all strands of hepatitis had been identified, let alone been incorporated into prenatal screening standard of care.
“There’s no way we could have known.” – Andrea
Adrienne was sick for 147 days before dying peacefully at home.
“My sister had a journal that she had started before she got sick. Several years after she passed I read it. She knew she was dying. She could feel when it was starting to get worse, and she never told me in order to protect me. I knew how bad it was, but I could not acknowledge that there was a possibility I would lose her until those last few days. Finally, I told her it was alright to let go. Her last words were ‘I love you sissy’.”
A year later, Andrea decided to channel her grief into helping others. She decided to volunteer to help other liver cancer patients. This proved to be more difficult than she expected. She went to a large organization for liver diseases and was told they did not cover liver cancer and were not interested in incorporating it. Andrea’s reaction? “I guess I have to do this since no one else is doing it.”
Andrea founded an organization, in her sister’s memory, for those with HCC. Blue Faery: The Adrienne Wilson Liver Cancer Association was launched in 2003. She reflected on her and Adrienne’s experiences and did her best to structure her organization to improve others’ journeys with HCC.
“When my sister was diagnosed, we got one pagers about the chemo but not about the disease.” – Andrea
Andrea had asked for more information and the doctor made copies from his medical textbook that were difficult for her to understand.
Determined to keep others from encountering the same frustrating experience, she has centered her organization on education. Blue Faery provides information in layman’s terms and their educational brochures are free to patients, families, and doctors and can be ordered electronically and shipped just about anywhere.
“We’re trying to do everything we can so that patients know the questions they should be asking their doctors. So that they know what they should know. I really just want patients to know how to advocate for themselves. I think it is a learned skilled; there are few people who are naturally good at it,” said Andrea.
Andrea was able to confidently advocate for her sister partially, she thinks, because her mother was a nurse and she grew up around “medical stuff.” She already felt comfortable in that context and as she put it, “I never thought doctors walked on water.”
In the hospital, she said that she and her sister “Got quite the reputation. Doctors did not always like me. As things got worse, my sister advocated for herself more. She took herself off one drug because she was going deaf. When we transferred her care from CHLA to UCLA, they were very accommodating about what she wanted. She started receiving chemo at home because did not want to be in the hospital all the time.” – Andrea
Andrea knows how difficult it can be for parents to question what doctors say or do. Even with the research she did and her willingness to stand up to doctor’s orders when she felt it necessary, there were things that retrospectively, Andrea wishes she had known or had asked.
When I asked Andrea what she wished she and Adrienne had known at the time, she responded that they did not know that the chemo drugs Adrienne was given were not specific to liver cancer. At the time, 2001, there were no FDA approved drugs specifically indicated for liver cancer.
“I wish doctors had told us in a better way, what all of our options were. Our first oncologist just said ‘I’m sorry; maybe you should plan a trip to Hawaii.’ I do not know if we would have made different choices; we had to try to fight it. I just wish we had asked more questions and had a doctor tell us at the beginning that there weren’t a lot of options instead of skating around that,” Andrea explained.
She wishes she and her sister had asked more about clinical trials and encourages others to pose the questions and do research. By the time the sisters did hear about a clinical trial, Adrienne had already been through a lot. She did not have a lot of strength left and they didn’t feel that particular trial had a good enough design or enough supporting evidence to warrant the risks.
“Clinical trials are often considered a last resort but they should be a first option for those with advanced cancers. It should be an early conversation,” said Andrea.
The first drug for liver cancer was approved in 2008 and more have been approved since, but Andrea pointed out that they are all palliative. She considers the development of the drugs a “win” still, but she has learned that many patients are not fully informed.
“Their doctors haven’t told them that the drugs are palliative and they think they are receiving [curative] treatment to beat it,” she explained.
Andrea was recently was at an event with oncologists to see how people are approaching treatments. She was the only patient advocate there and when they began to discuss colon and liver cancer patients, she asked if the patients knew if the treatments they were on were palliative.
The response she received was “Well, they have to sign off on a treatment.”
Andrea did not feel the response was adequate. “Of course, they sign and consent, but how many people actually read the fine print? It is the doctor’s job to put the legal jargon aside, look the patient in the eyes, and tell them ‘this drug will not cure you.’ It’s not an easy conversation but they have to get through to them, so that the patient understands they have more options [participating in clinical trials might be worth it for them] and, that not getting treatment is an option, and that’s ok, if that’s what they want. At the end of the day, it is up to the patients. They shouldn’t be disillusioned about the capabilities of the drugs that they are on.”
Andrea hopes that her organization will not only help inform and empower patients but will also help raise awareness of HCC and accelerate research towards a cure. HCC is a rare cancer in the U.S but the 2nd most common cause of cancer deaths, worldwide.
“Prevention is the best thing, then early detection. HCC is one of the most preventable cancers. With curative drugs on the market for hepatitis, the primary cause will change from hepatitis C (in the United States) to NASH and nonalcoholic fatty liver disease (NAFLD). It is going to be incredibly challenging to deal with. You cannot legislate lifestyle change. HCC is still on the rise. In cases where it is detected early, the patient may have known they were at risk and were being scanned regularly for it, but the majority of people who have HCC caught early have it caught by chance. They typically were being scanned for something else and the tumors were found that way. If it is caught early, resection or a transplant is the best bet, but it is a stubborn cancer. HCC comes back 50% of the time, especially if there is an underlying condition like hepatitis.
The drugs currently available are all similar. They are all palliative care drugs and while there are some companies thinking bigger, they have years to go.”
Regardless of the somewhat discouraging facts, Andrea remains staunchly hopeful.