My Health Care Experience: Putting the Person Back into Medical Decisions

My Health Care Experience: Putting the Person Back into Medical Decisions

Today was a glorious day – a bright spot on what has felt for months like an endless dark horizon. Today we welcomed my first grandbaby, Marcus into the world.

I’m excited by his arrival, but the exhaustion of the past few months has dulled my sense of joy. In my last Linkedin story, I wrote about waiting on a biopsy result/diagnosis. Well after much confusion the news is in. It’s not the worst news, but it’s not the best news either. The good thing is I don’t have cancer today. The bad thing is what I do have puts me at an unacceptably high lifetime risk. I use the word unacceptably because I realize risk is relative. It’s all about how you feel and what matters to you.

I am a risk adverse person to the core. Let me elaborate. I don’t gamble. I don’t invest in the stock market, only in fixed return and guaranteed principal assets. I have flood insurance, but I don’t live near the ocean. My home sits elevated 15 feet up from a small stream, a tiny trickle of a stream, that only turns frothy white occasionally. I don’t live in an earthquake prone area either, but yup, I have earthquake insurance too. Some people would think this was odd or funny. But I just think it’s prudent. In addition to being risk adverse, I have the misfortune of inheriting anxiety, yes, passed down from generation to generation, grandmother, father, me. A bad combination I guess you could say.

Now add into this mix a bad diagnosis and high lifetime risk of cancer.  You get where I'm going?

Many women, upon having the same diagnosis, would be fighting to keep their breasts. I’m hoping for the exact opposite.

In a situation where you have to chose between keeping a part of your body (and a lifetime of endless worry over getting cancer), or one surgery and recovery and being around to live a happy life, I, without any reservation would choose the latter. I want to be around to be my grandbaby’s grandma for a long long time.

In my prior story I wrote about the awfulness of waiting on a diagnosis. Well what I’m learning is that the waiting doesn’t end there.

In this situation, there are doctor’s appointments, consultations, more appointments, and the worst of all I’m sure, waiting on insurance matters and decisions. This waiting, too, is very hard. And the very strange thing is, you are waiting for other people, who’ve never met you, do not know you, and yes, do not give a 'lick' about you, to make decisions about YOUR body and ultimate fate. It’s like being behind the wheel of some autonomous vehicle, being driven to an unknown destination, by a blind force you don't know or trust.

I’ve learned other things in this process too. I’ve learned that things like mammography, reading mammograms, ultrasounds, even pathology aren’t exact science. What one person sees as harmless another can see as threatening. And bad things can be missed entirely behind the white cloud in my dense breasts.

And finally, even with pathology, what one pathologist sees under a microscope is a matter of his or her opinion, not exact, unquestionable science. The bottom line is - my diagnosis (ADH) is a stone’s throw away from DCIS which is considered cancer. Some researchers would even say it's just a matter of opinion.

Another thing I've learned up close from coming face to face with my own health crisis is that medical decisions are very personal. One patient's risk tolerance and personality profile may not be the same as the next, what matters to one person might be completely different to another. At the end of the day, healthcare decisions are very personal, and that's OK.

Linda Neaton

Founder at The Verge Awards(R) for Teens on the Verge of Greatness!

2y

Amen sister, thank you for sharing. Hoping all goes your way Linda!

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