BALTIMORE — It began around four or five years ago when Deborah Dressel was having pain in her lower back and buttocks area.
She had initially contributed it to the long drive from living on the Eastern Shore and working 12 hour shifts at shock trauma. She thought it was just normal back pain, but went to see a primary care doctor.
That doctor had a scan done, but nothing showed up. But within the next year, she could start to feel a lump in her back and the pain became more consistent with everyday activity and even worse when she was sitting.
"Basically every year that I was going in for my physical, for the last four or five years, I'm saying I have this pain, I have this pain. It's not going away," she explained.
This is when she went in to see Dr. Sonia Alencherry with MedStar Health.
"She was very thorough with the whole family history and everything," Dressel said. "She sent me to another general surgery thinking maybe it could be my spine or like just a cyst or something. He sent me for an MRI. He didn't like what he saw and then that's how I ended up with Dr. Wallace with the diagnosis of Chordoma."
Dr Alencherry said it's important to her to listen to the patient as they usually know their body the best.
"Her description of a chronic issue worsening always warrants further testing/evaluation in my opinion," she explained. "I would recommend to someone to speak to their primary care physician if there are issues that are interfering with your daily activities."
Chordomas are bone cancers that occur in the spine, most often at the base of the spine where it joins with the pelvis and the tailbone, called the sacrum and coccyx.
According to Dr. Matt Wallace with MedStar Health, Dressel's symptoms of low back pain, pain with sitting and a fullness around her tailbone is a fairly common complaint with sacral/coccygeal chordomas, though larger tumors can push on pelvic organs and nerve roots.
"I have had other chordoma patients present with numbness and tingling, difficulty with bladder and bowel functiona and pain with defecation," he explained. "Like many back pain patients, Mrs. Dressel had an MRI of her lower back, which typically does not extend through the sacrum, so the diagnosis is often missed for months because the imaging does not capture the tumor."
Dr. Wallace said she was fortunate that she had a history of a benign lipoma removed from her back, and her primary care specialist ordered an MRI of the pelvis that did identify the Chordoma while it was still small.
The doctor says most of the Chordomas he sees are three to four times larger by the time they are finally identified.
"I had surgery, they removed my coccyx with tailbone and part of my sacrum and tissue around it. They take it out in one whole segment. So it doesn't spread or vibrate," Dressel explained. "Now it's every three months its a follow up with an MRI."
For Dressel, she said it was a relief knowing that it wasn't all in her head, because no one could feel the knot she had.
"It was a relief, but then it was scary at the same time," she said.
These types of cancers are very rare, so there isn't a recommended screening test or exam to check for this cancer that is literally "one in a million." But as a general recommendation, Dr. Wallace says anyone with back pain and numbness, tingling, weakness, or bowel or bladder symptoms should be evaluated by a specialist.
Dressell says she wants people to know how important it is that people are listening to their bodies and asking questions.
"Listen to [your] instinct," she said. "Don't just pass it off as something that can go away or won't go away, get a second opinion."
For more information on MedStar Health and their resources, click here.