Would You?

by | Jun 4, 2021 | Blog

A door that opened for me two weeks ago closed the other day. I was excited with the possibility to work with a clinic in Houston. Three doctors sat across from me during my consultation. A proven cancer treatment beyond the “traditional” radiation and chemo. Explained that it’s not available to me.

It’s a double-edged sword for us both. Mine: I’m grateful I’m not able to utilize the treatment, because it’s only available with a terminal diagnosis. Theirs: they have a proven, scientific treatment that works, yet not for people like me. Even though thousands of miles away, I sensed the frustration on the other end. For me, it’s not that they won’t, they can’t.

Later in the day, I told my doctor of this clinic and learned he has a terminal cancer patient. The door that closed for me potentially opened one for someone else. For this sharing of knowledge, I’m grateful.

My doctor has a great point. There’s a lane dictated by the FDA and just because a new lane opens, it doesn’t mean the old one completely goes away. The advancement of chemo was through discovery and experimentation. To close people off from new advancements doesn’t feel to be in our collective best interests.

The state of healthcare in this country is off. We know this. The incestuous cycles that permeate the paths available to us becomes more evident as I traverse treatment for the cancer within me.

We’re told we have options, but will only be covered by insurance for the options that are approved. Otherwise, we’re coloring outside the lines. You’re on your own in a wilderness that those in the circle are quick to point out how scary it is out there.

It’s been a lot of work to dig into what’s available. Many hours of research, objectively looking at treatment options. Two weeks ago, I was resigned to a fate of mastectomy, and I felt powerless. Then the door mentioned above opened, and although now closed, new ones appear.

As I move forward, an additional surgery may still be on the table. To remove the rest of the tumor and then work to heal and clear the remaining cancer cells floating around in my body. There is a greater plan and path ahead of me, and I surrender to it as I stand and make decisions with discernment.

It’s no wonder why some people put their lives into the hands of the doctor in front of them, the doctor who tells them they’ll take care of their health issue. Financially and emotionally it’s sometimes easier.

I also understand the need for some of the lines. There are those who take advantage of patients, especially when they’re in a state of fear and have been given a diagnosis that left untreated will kill them.

With cancer though, we have time. Time enough to research what feels best for us individually. And I figure, if it was going to kill me in this short timeframe I’m taking to chart my course, then it was going to kill me anyway.

After the consultation, the breast cancer liaison from the hospital called to follow up post-lumpectomy surgery. When I told her I’m researching alternatives, she shared that she doesn’t know if she would follow the traditional path either. A very nice woman who sees first-hand the effects of surgery – radiation – chemo. Sometimes with a course of chemo pre-surgery.

How does this thought process apply to the very oncologists prescribing this remedy? 33% wouldn’t undertake or recommend this path if they were in my shoes. One third of doctors prescribing this for their patients wouldn’t take it themselves. Hmm.

90% said they wouldn’t undertake this path for themselves nor recommend it for family members at the end of life. They’d want to enjoy their remaining days free of the effects of medication that many times causes even more physical pain and anguish. It’s at the end of a patient’s life that chemo is prescribed even more aggressively.

20 to 65% of the revenue for a fee-based oncology practice comes from prescribing and administering what’s called the chemo concession. Of the 10,000 patients followed in a 2013 study, it was found that 96% of growth factors prescribed by their fee-based doctors was inappropriate. The annual cost of cancer care in the US exceeded $124B in 2010, was projected to be $158B in 2020, $268B in 2026.

Modern medicine has done many good things. But when a doctor makes money off of a captive audience because the audience isn’t aware of alternatives or doesn’t feel they have a choice, and that same doctor is making upwards of half or more of their income from something they themselves wouldn’t take, this feels wrong on many levels.

Integrity is the word that comes to mind.

Years ago, I had a conversation with a friend about work. That I wouldn’t ask someone to do something I wouldn’t do myself. He said that was bullshit. I disagreed.

There are certainly things I’m not trained to do, like work with electricity or perform surgery. But if in my profession I wouldn’t do the same service that people are paying me for, or I wouldn’t do what I’m asking a team member to do, that feels like a conflict. There’s a big difference between can’t do and won’t do.

A question to ask every practitioner is, “would you do this if you were in my position?” Not only will I listen to their answer and the tone of their voice, more importantly, I’ll watch their body language.

To have a treatment that’s proven for terminal cancer patients not be available for people with less severe stages feels criminal to me. To administer a treatment out of integrity is a different level of criminal.

We begin to change things by asking questions. Because if you wouldn’t, why are you asking me to? Listen in to When I’m Able.

Stephanie B. McAuliffe
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