Saturday, September 15, 2012

Using Big Guns to Hunt Radioactive Zebra

Today I attempted to explain to an old friend exactly why Chris experiencing extreme side effects from the radioactive iodine is a GOOD thing. It's counterintuitive and the conversation reminded me of something we've yet to address on this blog.

We are extremely blessed in our choice of doctors. Our care team is simply incredible.

That's not an accident though. We spent years going through doctors, trying to find someone who understood what Chris was experiencing. Finding our care team was the result of perseverance and patience.

There's a saying in the medical community: "If you hear hoofbeats, think horses, not zebras."

Chris is a zebra. Currently he's a radioactive zebra.

If someone could make me a design of a radioactive zebra I'd have a shop up on Zazzle and be selling radioactive zebra t-shirts by the end of the day.

But anyway...

Finding doctors who understood that they might be looking for a zebra can be incredibly difficult. Our breakthrough came in getting a very young and fresh family doc, convincing him that he was out of his depth, and getting him to send us to specialists. Then we just didn't quit until we got to the right specialist.

This is nothing new to me. In 2004 my youngest brother Tim, 30 years old at the time, suffered complete kidney failure. Most of the time dialysis patients are older, diabetic, and non-compliant. Tim is younger, has no other medical issues, and is incredibly OCD. Dialysis diets are written for the non-compliant. Tim might be the only dialysis patient in the country that almost stopped his heart from lack of potassium in his diet. Finding him a doctor who understood him took time and patience.

Finding a doctor who understands Chris ended up being incredibly difficult as well.

Chris got up to 300lbs overweight at one point. Most people that are that overweight 1. are diabetic, 2. have blood pressure issues, 3. lie to their doctors about their diet and 4. are past middle age. Chris is 36, normal blood sugar, normal blood pressure, and tells the doctors the truth. Finding a doc who understood all of that took some doing.

What finally did it for us was dealing with a new physician's assistant doing the intake at the group endocrinology practice. He didn't believe Chris either but he had a list of things he "had to do"in order to make the head of the practice happy.

The PA is the one who found the tumor.

Suddenly Chris got "upgraded" as it were. His case reached the ears of the head of the endocrinology practice, a man who graduated from medical school at Yale in 1969. He's one of the most respected endocrinology and metabolism researchers in the country.

This doc HAD to have Chris as his patient.

When we first met him we didn't jump through all the hoops or spend forever listing his symptoms to unbelieving ears. He came fully ready to believe that Chris was a zebra.

When Chris said "Endocrinology is weird and no-one understands it" the doc said, "Yeah, that's why I like it."

I'm fully convinced our endocrinologist's next research paper will heavily feature Chris.

Funny thing about doctors who "get it" and like odd cases; they know other doctors who feel the same way. That's how Chris ended up with an orthopedist who saw a man in his mid-30's with knee pain and treated him according to his age. Which meant Chris ended up with drugs that worked, not drugs that are safe for the vast majority of orthopedic patients.

Between these two doctors and their willingness to treat Chris as a zebra, they quite honestly saved his life. They reduced his symptoms, reduced his pain, and reduced his weight.

Most doctors are afraid to "bring out the big guns" as it were. Most doctors are afraid of lawsuits, malpractice claims, and non-compliant patients accidentally killing themselves. These doctors dived into Chris's case, took a good look at both of us, determined that we're educated and intelligent patients, and treated us accordingly. They brought out the big guns because we could handle it.

Which brings us to awesome doc number 3, our second (and final) surgeon.

There are no words for how much I love this surgeon. Mostly because of what he did the day of the surgery.

We'd met him at the consult and he'd gotten his measure of us. He knew who we were, he figured us out.

Right before the surgery he came to see us in the prep area. There he gave us the option.

"If I go in there and think that a lobe of the thyroid can be saved, do you want me to save it? That would reduce your chances of damage to the parathyroids and limit your risk. If I go in and I don't think it looks malignant, I can just take out the tumor and leave the rest alone, it's up to you."

We told him to take the whole thing, that we were pretty sure it was malignant (given the growth rate), and that we didn't want him going under the knife again if the pathology comes back with bad news. Also, with me being pregnant, we didn't want to take any chances.

He told us the surgery would take about an hour. It took 2 1/2 hours. Twice he had a nurse call me in the waiting room to update me and tell me everything was going okay, once during and once as they were closing up.

When he came to talk to me in the waiting area he walked up to me grinning like the cat that got the canary.

That's far more reassuring than it sounds. When a surgeon is wearing the "I fought a tough battle and I kicked its ass" grin, you know the world is okay.

He didn't withhold details from me. He'd already figured out that I could handle it.

He still didn't think it looked malignant, but he'd followed our wishes. Also, it was one of the largest masses he had seen, with the most extensive vascular network he had seen. He'd brought out the big guns.

Good thing too, as nine days later he's the one who delivered the bad news about the pathology (it was aggressively malignant; and without removal Chris could have been dead within a few months), and that Chris would be undergoing aggressive, high dose radioactive iodine ablation. He then passed the football back to our awesome endocrinologist.

Our awesome endocrinologist who, at the RAI consult, decided to keep bringing the big guns. He believed us when we told him we were already on a pretty low-iodine diet and had already stopped the thyroid supplementation in preparation for the treatment. He took us on our word, had a blood test run to confirm that Chris was ready, and had Chris booked for RAI by the end of the afternoon.

They usually wait six to eight weeks, just to make sure; but the doc understood how serious we were about nuking this bastard from orbit, and exactly one month after surgery Chris received his first RAI treatment. The minimum amount of time after surgery, the maximum dosage allowed for all but the most extreme life-threatening cases. We prepped to the max; not only did Chris adhere to a low-iodine diet, he went way past low-iodine requirements and made his body as desperate for iodine as possible.

It's not just the docs who get to bring out the big guns. Sometimes the patients can do that for themselves.

I can't state enough how unusual it is for doctors and patients to agree on going all-out, much less putting it into practice. It's almost unheard of. Usually both sides are much more cautious, would rather extend treatment than risk bad side effects or collateral damage.

Clearly Chris isn't a normal patient, and these aren't normal doctors.

Using the big guns does have a few drawbacks. Chris is incredibly sick; he's so hypothyroid and soaked up so much radiation that we weren't really prepared for how bad he'd feel.

Incredibly sick is a good sign. A sign that we maximized the amount of the RAI he'd soak up, and a sign that there's not much thyroid tissue left to cause a problem. This is one case where being really sick means you did something right.

In another week he'll undergo the full-body gamma camera scan to see where the RAI soaked up and identify any other masses that need to be removed. If that's clear or mostly clear (small spots will be cleared up over the next 6 months as the RAI clears his system) treatment will be considered successful. If there are a lot of specks remaining, large concentrations of specks, or any clear masses; they'll wait a few weeks for the remaining I-131 to clear his system, then dose him again, and scan him again.

They'll scan him again in six months to check for any other masses or concentrations of specks, and there's a chance he'll need to go for another treatment; but if the treatment was aggressive enough in the first place, it's unlikely (then he'll have to get a scan once a year for the rest of his life).

If treatment was successful the endocrinologist will start the thyroid hormone replacement regimen and start tinkering with dosages. He won't be starting at the normal "safe" starting point either; he's willing to calculate dosage according to what he knows about Chris and try to get the dose right the first time (400mcg per day; about four times the normal starting dose). He'll still be bringing out the big guns.

This is what happens when you're an educated patient, you find the right doctors, and you're willing to take some risks in order to get it done right the first time.

Being willing to take chances, using the big guns, and finding the right doctors is what it takes sometimes.

Especially if you happen to be a radioactive zebra.