Tuesday, November 6, 2018

Adenomatosis: A Work In Progress

I heard back from the tumor board. They want to take the biggest tumor out. I'm not sure why.

1. This hepatic adenoma is less than 5cm. The rule-of-thumb is under 5cm and no one cares. Granted, that's for when they aren't bleeding. I do get that my situation might be different.

2. I was told the adenoma with internal hemorrhage would eventually heal on its own.

So I'm a little confused.

We meet with the surgeon next and I hope to learn more.

Meanwhile, I'm continuing to network with other patients and wow, there is a lot of bad medical care out there for this. Wow. Wow. Wow.

Right now, I'm lucky. It's obvious the hepatologist knows what they are doing. I'm sad/mad to see so many women who don't have that.

Women with active pain that is likely a sign of tumor growth/change are blown off over and over again.

Women who are told there is no way they can have pain.

(YES YOU CAN HAVE PAIN. Just talk to as many patients as I have. At this point, I have met more patients with adenomas and adenomatosis than most doctors will ever see in their practices. ADENOMAS HURT. Yes, we know there are no nerves in the liver. Medicine is missing something. New/changing pain is a message from the liver...LISTEN.)

Women with small tumors who are dismissed and ignored despite symptoms.

Women who are told hormones are okay if it's an IUD. (NOPE. Not okay.)

Women who aren't getting the right imaging and are given 'busy work' of useless ultrasounds.

(Small adenomas need MRIs, guys. CTs might pick up something, but my ER CT either missed or couldn't see the hemorrhage in mine...I needed the MRI and thank God I pushed and got one within 10 days of my ER visit or they might have never discovered what was going on).

Misogyny in medicine is one thing. Medical misogyny and rare disease shit is a worse thing.

So I was thinking, how do I know a doctor is good?

1. In this case, the hepatologist knew exactly what I had. Their care plan aligned with the medical literature without being rigid about it. What do I mean by rigid? Some doctors take the medical literature on adenomas as a series of inviolate laws and ignore their patient's experience.

 "Your tumors are small, they can't cause problems unless they are bigger than 5cm." Doctors actually say this to women. It's not true, but medical care isn't always about logic and data. Science is often subverted by bias and knowledge gaps and ego.

2. A good doctor listens and allows me to speak.

3. They're organized. They follow up. What they say is what they do.

4. They don't diagnose before the test results are in. The bogus IBS diagnosis I kept getting was always dumped on me within the first five minutes of a first time visit with a physician.

5. They actually order tests. Real tests, not busy work, 'shut the patient up' tests.

6. When the tests don't show anything, they have enough experience to understand that doesn't mean there isn't an issue. They may not be able to do a lot without objective evidence, but just following a patient and not blowing them off is invaluable.

(It was ME who gave up on my mysterious GI stuff, not my original GI. The tests never showed anything and the GI didn't have any other ideas and I don't like going to the doctor all the time, so I checked out. We'd hit a stalemate.)

When these six things aren't happening, I get antsy. Depending on how bad it is, I may stick around for a bit, but I don't hesitate to walk away if necessary.

That's the lesson I keep learning over and over again. You have to keep going until you find someone decent. Don't settle.

And my final thought for this post, is this...

Do I have something else going on? I see an awful lot of specialists from someone in their 40s. And I started piling them on in my 30s!  I'm starting to wonder if I'm going to have a specialist in every specialty! Just for this GI stuff, I'm going to have at least 3 different specialist for different things. That's weird, I think. It shouldn't be like that.

There are some other causes of adenomatosis. Is there a unifying thread that ties this all together? Will we actually find it?

Who knows! It's all a work in progress.

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For adenomatosis or hepatic adenomas, this is the best article I've found: http://gi.org/wp-content/uploads/2014/08/ACG_Guideline_Focal_Liver_Lesions_September_2014.pdf