My family and I learned a huge lesson about medical care these last few months as we faced losing my mother: All doctors are not created equal.
While you might claim to already know that, I assure you we didn’t just fall off the proverbial turnip truck. We’re a bright, educated bunch.
Looking back at my mom’s journey to a diagnosis, I can see we made quite a few mistakes. First and foremost, we put too much trust in our doctors, not realizing how crucial it is to seek the second opinion of an expert.
Your family could make the same mistake of not finding a top specialist, considering the rarity of mesothelioma and how often it is misdiagnosed.
Mesothelioma has entered your world, and you’re absorbing a whole lot of information from a variety of medical personnel. You may be assuming it’s all accurate, true and the best information available.
When doctors mistake mesothelioma for less serious illnesses, it delays you or your loved one from getting the proper and urgent care that is so important with this cancer.
First Sign of Symptoms
On a leisurely walk back from town while on vacation a few years ago, my mom huffed and puffed so badly my son ran back to get the car to pick her up.
“Hmm, that’s weird,” I thought.
I made sure I went with mom the next time she visited her cardiologist, who she saw for an occasional rapid heartbeat. Once in the exam room, I asked him point blank if Mom had congestive heart failure.
He looked me in the eye, chuckling at my assertion. “It’s just old age,” he said.
Mistake number one: I trusted him.
Fast Forward a Year
Mom later ended up in the hospital with a kidney infection. A CT scan revealed fluid in her lungs.
I was done monkeying around with her cardiologist. Based on a recommendation from a trusted friend, we visited a second cardiologist.
Within minutes of examining her echocardiogram results, he said she had a dangerously leaky mitral valve and needed open-heart surgery.
The first cardiologist never mentioned a leaky valve to Mom or me.
With this great revelation, my siblings, parents and I were in full trust mode with the new cardiologist. That was mistake number two.
He referred us to an excellent thoracic surgeon, and we scribbled the surgery date on the calendar and waited.
The thoracic surgeon postponed the procedure because a colleague who was expected to assist with the surgery broke his foot.
Weeks went by. We called inquiring when we could move forward.
Finally, the thoracic surgeon set the date despite the continued absence of his colleague (who we later learned had a lot more surgical experience).
Mistake number three: We failed to question why he was stalling.
Bad News After the Surgery
The thoracic surgeon announced to our expectant faces that Mom’s heart was too far gone, and he could do little to improve her condition.
His words implied she faced an agonizing slow death from congestive heart failure.
Mistake number four: We believed him.
For the next year and a half, Mom’s condition steadily declined. She lived as a prisoner on the couch, unable to walk even to the bathroom without losing her breath.
We sadly faced the inevitable. Mom was dying.
On one of our regular visits to the second cardiologist, he casually mentioned that we could go see this other guy. The referral appeared so halfhearted that I scarcely took it into consideration.
After sitting on it a couple months, I made the appointment with this other guy, who happened to be at a major university hospital.
“It will make Mom feel like we’re doing something to help her,” I told my sister, not expecting to hear anything positive from the new doctor.
Mom Finally Got Help
Now, just a few weeks after her second open-heart surgery, Mom walks without losing her breath. This other guy replaced her valve and repaired the heart that was too far gone.
Thankfully, Mom is alive because of that.
We learned most thoracic surgeons only perform four or five valve replacements a year. Our other guy ranks as one of the top valve specialists in the country with almost 5,000 valve replacements under his belt.
Why had we not asked the first thoracic surgeon about his experience with this procedure?
Answer: We trusted cardiologist number two and assumed if he made the referral, the surgeon possessed the qualifications for the task.
My bright and educated siblings currently feel like a bunch of knuckleheads.
Now Back to You
Mesothelioma is as new to you as congestive heart failure was to us. You trust your doctors and abide by their decisions.
But ask yourself these important questions:
- Who are your doctors?
- How much experience do they have with mesothelioma?
- As you face this life-and-death crisis, are you seeing doctors who specialize exclusively in mesothelioma treatment?
Don’t waste time. If they rarely work with asbestos-related diseases, don’t blindly trust what your local doctors tell you, however well-meaning it may be.
Some helpful advice for you:
- Find out everything you can about the disease.
- Talk to other people affected by mesothelioma either in person, online or in a support group.
- Ask your doctors how many mesothelioma cases they’ve diagnosed and treated.
- Ask them about their patients’ survival rates.
- Do not be intimidated by your doctors regardless of how they respond to your questions.
- Get a second opinion.
- Research which doctors are considered experts in this specialty and make an appointment with one of them.
- Be willing to go travel for treatment. It could extend your life.
We Must Act as Our Own Advocates
When it comes to matters of your health, it helps to be proactive.
“Remember, medicine is a service industry,” said Dr. Lissa Rankin in her blog about taking charge of your health care. “Proactive patients, the ones who have the best health outcomes, don’t hesitate to ask their doctors questions, get second opinions, and switch health care providers if the fit isn’t right,” she said.
“Your body is your business!” she adds.
Even if you feel uncomfortable with being assertive, doctors are expecting it from their patients more and more.
“There has been a solid, steady push over recent years toward patient empowerment,” said Linda Adler, CEO of Pathfinders Medical Advocacy and Consulting, as reported in U.S. News and World Report.
“It’s been largely encouraged by dedicated patients and some providers who believe that health care isn’t only a right, but that people should have greater control over what happens to their own bodies,” Adler said.
Learn From Us
Take it from the knuckleheads who languished three years in trust, only to finally stumble onto someone who offered Mom life.
Don’t trust like we did; don’t make the same mistakes. Instead, take control of your health. Find the right doctor for the best mesothelioma treatment and go from there.