Personal Story: Adventures in Medicine and How Insurance Plays a Role

Hello bOObs Bloggettes:

So I’m going to vent a wee bit here regarding how a funky growth on my back with a strange biopsy was treated recently by Modern Medicine. This type of debacle is unfortunately one I keep reliving over and over again, so I decided to write about it in hopes that it might help some of you.

I know I sound a little cynical sometimes and I apologize if that’s off-putting, but it’s these kinds of adventures in conventional medicine that drives that voice. I want to believe in conventional medicine when I need it, but it almost always fails me — and I hear repeatedly from friends their own horror stories as well.  Why does this happen as frequently as it does? The reason might be this: I’ve heard from many doctors that there are only two areas in which medicine excels, and that is emergency medicine and some surgeries. Other areas of treatment are a little dubious, they’ve told me during interviews.

And if you really think about it, medicine doesn’t really “cure” any type of chronic disease. Sure, they’re good at putting band-aids over our complaints and symptoms with medications, but they never actually cure our chronic diseases. Contemplate this and you’ll probably come up with some examples of friend’s or family member’s chronic diseases that are never actually “cured”, only treated.  Cancer, unfortunately, is one such chronic disease. Unless they excise the tumor surgically, the other toxic treatment forms of chemo and radiation in themselves are carcinogenic and the patient risks getting “secondary cancer” years later from those treatments. But this is a very complicated subject and I will not digress further into this area…for now (it’s the topic of my second film: A New Standard of Care).

Suffice to say I had the chronic disease of Lyme for several years and had to cure myself using non-conventional medicine after I was told I was “incurable” by conventional medicine. This was only after they failed to believe I had it and treat it quickly with a cheap bottle of antibiotics.

So here’s my recent story:

I had a small growth (a mole?) on my back which started “morphing” some following the bout with COVID I had in December and some stress I was under (there’s that stress thing again! See previous blogs on this). I couldn’t get a dermatology appointment for a month or so, and then only with a PA vs. an MD. But I took the appointment. Meanwhile, however, I took matters into my own hands and treated it with alternative medicine — which began changing it even more rapidly, so I knew it was at the very least a pre-cancer or else it would not do so (long story; that will be in my next film).

Finally, the day of my appointment arrived. I had been assured that they wouldn’t have time to take the “mole” off my back that day, but when I got there the brusk PA said she was going to “scrape it off” nonetheless.  I said no thank you and told her I didn’t want to spread the would-be cancer elsewhere in my body. Could she please excise it entirely instead? She said that excising first was no longer the Standard of Care (there’s that term again! See previous blog on this with insurance) and that “seeding cancer” from “scraping” or biopsy was a myth (sound familiar? see previous blog on seeding cancer via biopsy). I felt like I was living my blogs in real time!

The PA and I went back and forth for a while and finally I relented, saying “as long as you get the margins with this ‘scraping’ thing” that she was now insisting was more of a “scoop.” She scooped, I left…and then a week later all hell broke out.

I got a call from someone in their office (sounded like a 10-year-old) telling me it was a benign “keratosis”. I questioned that diagnosis as it was changing with alternative treatment, and asked about the margins — she said they didn’t mention in the report the margins as it was benign. I asked her to have the PA call me. She did the next morning, but the PA still had no explanation for the lack of margins in the report.

Then the doctor called me. He told me he looked at the pathology/biopsy slides again and mumbled something about understanding why I was worried about cancer as there were some weird cells in there, and that it did dip down into the derma but no melanocytes had escaped and blah blah blah. Then I asked about whether “clean margins” were obtained? Well, he said, the PA “got pretty close”! Ok. So that told me she didn’t get “clean margins”. I was not happy.  Further, when I called the office later to transfer records to another dermatologist, there was no record that the PA and doctor had even called me! And the diagnosis had not been changed to “questionable” or “we don’t know what the heck it is” or something of that sort. Hmmm…

So I went to a new dermatologist and she was somewhat alarmed to hear the story of how my case was handled. We discussed options and long story short, she re-biopsied the site (going for The Big Dig this time) to make sure that clean margins were obtained; further, she is going to send the first biopsy slides into another pathologist for a second opinion. So we’ll see what happens and I will report back.

But at least I’m sleeping better now knowing that we’ve done all we can at this point to have gotten the whatever-it-was off my back and out of my body.:)))))

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Which leads me to...insurance and BC screening and the Standard of Care. I’ve mentioned this before, but it bears repeating:

First, remember that the PA in the above story told me “it’s no longer the Standard of Care” to go right to the excision phase, but rather they do the “scrape” method first — which risks spreading the would-be cancer, in my opinion. Case in point: I had a dear college friend’s melanoma misdiagnosed (probably as a benign keratosis), and he sadly died a year or two later; his story stuck in my mind as I was living through this mess. The Standard of Care is what’s driving medicine and it’s driven largely by insurance companies, doctors tell me.

So back to BC: I’ve blogged about dense breast tissue and medicine’s use of the inaccurate mammogram vs. the more accurate ultrasound first. The Standard of Care of getting a mammogram first is decided largely by insurance companies as it’s been deemed the only “primary screening tool” by the US FDA and hence insurance companies.

I suspect association heads and their members (radiologists to be exact) are involved somehow as well, let alone the hospitals that have invested huge sums of money into mammogram machines as well (see my blog on this).

In interviewing a radiologist about a year ago, I was alarmed when, after speaking to him for well over an hour, he said this: If you think breast cancer screening is a mess, well that’s just the tip of the iceberg of problems in medicine.  That is one scary thing to hear out of a doctor’s mouth — but unfortunately, it ain’t the first time I’ve heard it.

Blog at you soon, thanks for reading and helping to spread the word!  (Please see the “share” links below.)  And we’d love to hear comments from you! (see below as well)

Stay healthy,

Megan

Megan Smith, M.S.
Director, bOObs: The War on Women’s Breasts

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