One Tough Mother
- Wife and mother Rhonda Long of Clayton, Ohio was working hard in organizational management when she started feeling “off” in 2015. Later learning her abdominal pain and weight gain were from bile duct cancer was an extreme shock.
- Initially chalking her symptoms up to stress, she wasn’t overly concerned. Just to be safe, Rhonda went in to get checked by her doctor. All of her tests came back normal, at first, until doctors found the mass in her liver.
- Tragically, Rhonda suffered from a recurrence the same time that her late husband Paul was diagnosed with a rare kidney cancer, so both parents were going through treatment simultaneously at one point.
- Unconsciously, some physicians might assume that certain racial groups have less education, or are less able to afford some treatments, and may not offer them all the information or therapy that they could. By advocating for yourself, you can make sure that your doctor sees you as an individual, and doesn't fall back on assumptions.
"I had abdominal pain, weight gain, swelling and inflammation," Rhonda told Ohio lifestyle site Dayton.com. "I gained 12 pounds in a week with no explanation."
Read MoreHer doctor told her to go straight to the emergency room. This time, some further tests revealed “stones and sludge” blocking her bile duct and what appeared to be a large tumor.
"I had surgery to remove the mass," Long said. "After I was in recovery, I got my diagnosis."
In 2016, Rhonda learned she had bile duct cancer, which only affects roughly 8,000 people per year in the United States.
"I was naïve about the severity of my cancer," Rhonda admitted. "I thought if I had surgery to cut it out, that would fix it."
Telling Your Kids You Have Cancer’When it Comes to Your Kids, You Want to Protect Them’
"Everything you read about this type of cancer is doom and gloom," Rhonda said. "I had the support of my family, and everyone insisted I get second and third opinions."
Doctors were not very optimistic about surgery due to the difficult area of her tumor inside her liver. "I thought there was no hope for me," she admitted. Fortunately, her sister is a nurse at Duke Medical Center in North Carolina and helped advocate for her, also helping getting her in as fast as possible.
Rhonda was extremely grateful for the help, but her bills were piling up, and having to go through all of this away from home was tough because of her son.
In January of 2016, Rhonda had half of her liver removed, along with 13 lymph nodes. Two of the lymph nodes unfortunately came back with cancer, so she was also immediately referred for chemotherapy and radiation.
Healing from her surgery took eight weeks, and thankfully her husband, Paul, was able to travel to North Carolina and be there with her during that time. Rhonda did her radiation there as well, then went back to Ohio for her chemotherapy.
Little did she know, this was just the beginning of a rougher road.
"Paul ended up being diagnosed with a rare form of kidney cancer in 2018,” Rhonda shared. She had gotten through treatment and had been doing well by this time, then another big blow: her cancer returned. She and her husband were back in North Carolina, only this time, the two were going through chemotherapy at the same time.
"After three months, the chemo stopped working for me," Long said. "I was referred to an oncologist in Boston who was holding a clinical trial based on my specific mutation."
Fortunately, the trial worked to keep the cancer at bay. Paul would wind up beating his cancer, but in another cruel life twist, his came back as well. Tragically, he didn’t make it through this time and passed away in 2020.
The following year, Rhonda, now a widow, had to face her cancer symptoms coming back yet again and she enrolled in another trial. As of March 2021, she has been doing well and her cancer is “stable” after her tumor shrunk.
"I'm the only parent for my son now," Long said. "By God's grace I'm still here. I have had to fight to get answers, always advocating for my own health and life. It's why I'm here today."
Advocating for Your Health
Being your own advocate is always important when it comes to cancer care, but it's even more significant if your doctor might be dismissing you because of the color of your skin.
After her overwhelming diagnosis, Rhonda was fortunate to have her sister’s help, but without her, she may not have known where to turn.
Unconsciously, some physicians might assume that certain racial groups have less education, or are less able to afford some treatments, and may not offer them all the information or therapy that they could. By advocating for yourself, you can make sure that your doctor sees you as an individual, and doesn't fall back on assumptions.
"One of the biggest things that I did from the very beginning was asking the right questions," says Alex Echols, patient advocate and lymphoma survivor. "It's our lives on the line." He credits these questions with making sure that doctors took him seriously and viewing him as a partner in his treatment.
Advocating For Yourself While Navigating the Medical World
Evelyn Reyes-Beato agrees. She encourages other people in her position to "get knowledge" so they can ask the best questions they can, and to not be intimidated by doctors. Whatever your racial identity, you have a right to make physicians "earn that copay".
Jenny Saldana, another Latina, was told "you can't keep coming back here taking up resources for women that really need them" when she was trying to get a diagnosis for her breast cancer. Her solution? "The squeaky wheel gets the oil," she says. She doesn't think she'd have survived if she hadn't advocated for herself.
Erika Stallings, a breast cancer previvor, agrees. "There are studies that Black women are sixteen times less likely to get a referral to a genetic counselor" she says. If you feel you're not getting the same options as other patients because of your race, speak up.
Understanding Bile Duct Cancer
Bile duct cancer, also known as cholangiocarcinoma, is a rare disease that's both incurable and increasingly lethal over time.
About 8,000 people in the United States are diagnosed with this type of cancer every year, according to the American Cancer Society. This disease has a higher incidence rate in Southeast Asia due to an infection that can lead to bile duct cancer.
The cancer forms in the bile ducts, which carry the body's enzymes to break down fat to other organs. Only when a doctor can altogether remove the tumor or tumors from the body is survival a possibility for patients.
While it can occur in younger people like Rhonda, bile duct cancer is typically found in older adults, over the age of 70.
Palliative care options can include surgery, radiation, stents (like in Tony's case) and chemotherapy. This is a standard treatment plan given the advanced age of most patients at the time of diagnosis and the low five-year survival rate for the disease.
Despite the poorer prognosis for this disease, it’s important to know that you are not a statistic.
Rhonda has been a true rock star and is proving statistics wrong every day as she continues to fight for her her health for her son.
As the cancer warrior and advocate mentioned, you never know what is around the corner as far as treatment goes in the medical world. Rhonda has already had tremendous success with clinical trials. Her spirit is remarkable and we wish her the best and many more years of health!
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