Overcoming a Misdiagnosis Includes Advocating for Yourself
- According to a new study, patients with blood disorders are commonly misdiagnosed putting them at increased risk for treatment mistakes and other potentially harmful consequences."
- "Good Morning America" host Robin Roberts, 62, overcame breast cancer and myelodysplastic syndrome (MDS), a rare blood disorder impacting the bone marrow. This year marks 11 years since she underwent successful bone marrow treatment to treat MDS.
- Myelodysplastic syndrome is a group of bone marrow disorders that affect blood cell production. It is considered a type of blood cancer. It can evolve into acute leukemia, the most aggressive type of blood cancer. This happens in about 1 in 3 cases.
- Symptoms of MDS include frequent infections, fatigue, shortness of breath (anemia), or easy bleeding/bruising. These symptoms result from the bone marrow being unable to produce enough healthy, functional blood cells.
- Remember, you should be your own biggest health advocate by staying in tune with your body. Don't be afraid to tell your doctor when something doesn't feel right, especially amid misdiagnosis concerns.
For cancer patients, milestones are to be celebrated and for "Good Morning America" host Robin Roberts, 62, she's on the verge of her 11th anniversary since overcoming myelodysplastic syndrome (MDS), a rare blood disorder that impacts the bone marrow. Roberts was diagnosed with MDS in 2012 but according to new research, patients with blood disorders are at higher risk of being misdiagnosed which could impact their ability to get the treatment they need.
At the time of Roberts’ MDS diagnosis, she had already overcome a breast cancer diagnosis which came about several years earlier in 2007. Amid Roberts’ diagnosis, she was fortunate enough to find a "perfect match" for a bone marrow transplant thanks to her sister Sally-Ann. Roberts underwent a successful bone marrow transplant procedure in September 2012.
Read MoreWATCH: How patients with MDS have a chance with a bone marrow transplant.
While dealing with the disease, Roberts said "physical exams, blood and painful bone marrow tests and chemotherapy" became her "new normal" according to ABC News.
She underwent 10 days of "intensive chemotherapy" to prepare for the transplant. After the procedure, it took her about a month to begin regaining her strength. Her MDS journey was chronicled in a special edition of "20/20." She returned to hosting "Good Morning America" in February 2013.
RELATED: Managing the Emotional Toll of Living With Myelodysplastic Syndrome.
As inspiring as the prayerful and resilient Robin Roberts' MDS journey is, according to a new study, many people impacted by MDS are at higher risk of a misdiagnosis.
Researchers with Sylvester Comprehensive Cancer Center at the University of Miller School of Medicine said in a press release, "Blood disorders…are difficult to diagnose and are commonly misdiagnosed putting patients at increased risk for treatment mistakes and other potentially harmful consequences."
The research was published in the peer-reviewed journal of the American Society of Hematology "Blood Advances." More than 900 patients were involved in the study across the United States and Israel.
Chief of Sylvester's Division of Hematology and study author Dr. Mikkael Sekeres said, "Expert pathologists had major disagreements with local pathologists' diagnoses in about 20% of overall cases." Dr. Sekeres says one possible reason community-based oncologists and pathologists’ diagnoses of rare blood disorders may disagree with expert oncologists may be because they're more accustomed to common cancers like breast as opposed to rare disorders.
"Some patients were told they had cancer when they didn't, or the opposite that they did not have cancer when, in fact, they did. More importantly, we showed that misdiagnosed patients received the wrong initial treatment almost 10% of the time," Dr. Sekeres continued.
The biggest takeaway from the study was "seeking expert opinions from National Cancer Institute-designated cancer centers, especially with rare blood and bone marrow cancers such as MDS," Dr. Sekeres said.
More on MDS
Understanding MDS
Myelodysplastic syndrome (MDS) is a group of bone marrow disorders that affect blood cell production. It is considered a type of blood cancer.
"The bone marrow is the factory that makes all of the cells that wind up in our bloodstream," Dr. Mikkael Sekeres previously told SurvivorNet.
Myelodysplastic syndrome can evolve into acute leukemia, the most aggressive type of blood cancer. This happens in about 1 in 3 cases.
RELATED Dr. Sekeres explains what acute myeloid leukemia (AML) is.
WATCH: What is Myelodysplastic syndrome (MDS)?
Dr. Jun Choi, a hematologist/oncologist at NYU Langone's Perlmutter Cancer Center, explains MDS: "When there is a dysfunction in the bone marrow, there is a production of defective blood cells, and there is also a deep decrease in the production of blood cells. So the consequence of that is low blood cells in your bloodstream…MDS affects all types of blood cells and ultimately it is considered a bone marrow failure disorder."
A bone marrow biopsy can confirm MDS. It can also provide other details on your cancer.
"The biopsy has to be reviewed by the pathologist to see if there is what's called dysplasia in the blood cells. Dysplasia is abnormal-looking young blood cells that we also want to send the bone marrow sample to assess for any genetic changes," Dr. Choi says.
"Whether there are any abnormal changes in your chromosomes, in the blood cells inside the bone marrow. And based on those, we can categorize the MDS into different categories, different types, and ultimately, they can also help us guide the treatments and the prognosis as well," Dr. Choi added.
Symptoms of MDS include frequent infections, fatigue, shortness of breath (anemia), or easy bleeding/bruising. These symptoms result from the bone marrow being unable to produce enough healthy, functional blood cells.
Determining treatment will depend on several factors, as your doctor will assess blood counts, bone marrow, the number of immature cells in the marrow, and how cells mature.
Advocating for Yourself
It's important to know, misdiagnosis can happen to anyone that's why you need to be your own biggest advocate, especially when it comes to your health. This skill becomes even more important when you sense your doctor might be dismissing your symptoms.
By advocating for yourself, you can make sure that your doctor sees you as an individual and doesn't fall back on assumptions.
Dr. Zuri Murrell from Cedars Sinai Medical Center in Los Angeles urges patients to push back when they feel that something is off.
"The truth is you have to be in tune with your body, and you realize that you are not the statistic," Dr. Murrell told SurvivorNet. "That's why it's important for you to actually educate yourself and be your own health care advocate."
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