I’ve been hearing a certain comment over and over lately and its severity really resonated with me today.
“Be your own medical advocate.”
That’s a pretty heavy load and one I’m not entirely sure I’m excited to tackle. I grew up, like many people I’m sure, with a reverence for doctors. Until recently, I would have never thought to actually question a diagnosis, load myself up with information before visits or double-check a doctor’s prescription. I believed that a medical degree afforded a certain amount of confidence and, of course, knowledge.
But, I heard a story today that chilled me to my very core and reminded me that doctor’s are human, and therefore capable of human error.
A friend of mine found out this spring that she has Stage-2 rectal cancer. As daunting as that is alone, the part of her story that really scared me was the road she took getting to that diagnosis.
Eighteen months ago, during a routine annual exam her gynecologist found some suspicious pea-sized nodules in her rectum. Not suspecting anything particularly harmful the doctor sent my friend for a closer look with a specialist. A colonoscopy deemed her free and clear. She was told the lumps appeared to be scar tissue and the doctor saw no need for further inspection. A note was sent to her gynecologist explaining the situation and away she went feeling slightly unsure but comfortable with the doctor’s decision.
One year later my friend began experiencing strange symptoms and went back to her gynecologist with questions. Given the nature of her symptoms the doctor referred her back to the gastroenterologist she had seen the year prior. This time the news was dire. The specialist was 99% sure my friend had rectal cancer and in her words, as told to my friend, “It’s bad. You know…the kind that Farrah Fawcett had?” Two months later, after a battery of tests and a slew of procedures she was officially diagnosed.
Cancer. The same cancer she was already suffering with twelve months before the diagnosis. The same cancer whose symptoms drove her to see a specialist. The same cancer that had been written off as “scar tissue” the first time around. The same cancer that had advanced from what would have been considered Stage-1 had she been diagnosed correctly the first time.
My friend has now endured 23 weeks of radiation and 2 rounds of chemotherapy, suffering burned skin and complete hair loss. Her determination is strong and her faith in God is stronger. She will find out in the next few days whether the brutal treatment she endured actually worked. She already knows that this was most likely her only chance at this type of treatment and the next step could possibly result in the removal of her rectum.
After telling me her incredible story she encouraged me to “be my own advocate.” Had she went with her gut reaction over a year ago and pushed that insensitive specialist to have the lumps biopsied, there’s a chance her cancer would have been caught at a much earlier stage leaving her more options for treatment and a better chance at beating the disease.
I have nothing but optimism that my friend’s check-up will go as planned and her cancer will have receded. But her encouragement to advocate for myself really struck a nerve.
For a whole host of reasons I’m not about ready to get into, the medical community is changing and it is now, more than ever, in our best interests to take an active role in our own health. It’s important to do our own research from reputable websites or books and magazines and arm ourselves with questions and concerns to be discussed at appointments. Gone are the days of just accepting a diagnosis at face value when our guts are telling us there’s reason for distrust. We have to be our own advocate or that of those we love.
So, there you have it. Remind your loved ones to get all necessary tests and screenings. If your doctor doesn’t order it, request it. Arm yourself with knowledge. And do not be afraid to question anything. Our health is precious and worth the extra effort.
Mindy
christina says
My thoughts and prayers are with your friend.
Lori @ In Pursuit of Martha Points says
Many good thoughts for your friend.
I work in health care.
I want you to be an advocate.
I know all these people personally.
I want you to be an advocate.
Mindee@ourfrontdoor says
So, so scary. Thanks for the reminder Mindy.
Megan (Best of Fates) says
SUCH an important reminder – and my thoughts are with your friend.
Marly says
I absolutely agree that you have to be your own advocate for health care. What a difficult time for your friend. My thoughts are with her, her health care team and the scientists working hard to find cures.
SuziCate says
That is such a sad story. My aunt found out she had breast cancer, only to find out it showed up on a mammo done a year earlier and deemed clear. It was not considered an early stage, but she had treatment and is still cancer free eleven years later. Fortunately, hers so far has a happy ending to her medical saga. It’s scary about how much is missed and “dismissed” by doctors, but it is esp. hard when you have a bad feeling and they make you feel stupid because they happen to have a degree! Your friend is right about being your own advocate, but it is not an easy road.
Heather says
I have seen and experienced medical mishaps and have truly lost my faith in the medical profession. I think we were so used to the doctors being the only voice in telling us what was wrong, being that we didn’t have medical degrees or the vast amount of information at our finger tips. I am still learning that I can use the internet for researching my symptoms and finding the right questions to ask.
Great post and I hope all goes well with your friend.