Decisions Part 2: Saying no to Dr. Hummer
Apr. 30th, 2010 10:34 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
shapeofthingsPart 1 is HERE
It's been an interesting few months. I've been to talk to the doctors at the nuclear clinic, my potential surgeon and my endocrinologist about my options for further treatment. And in the mean time, my thyroid levels have finally come down into the normal range, and even slightly low, for the first time in almost a year. It's been lovely to have a few weeks of feeling like my old self and I have relished every minute of it. But it's over now; I'm on my way up again, but at least time it's intentional.
To your left is Dr. Hummer. Well, that's not really his name (it's Dr. Wilkinson), but it is his obsession. He drives a Hummer (yes, you guessed that much, I know). He gets articles in the newspaper about why he drives a Hummer (click here!). He has model Hummers in his office (it's true!). He even has Hummers on his official office stationary (evidence provided on request). He is also the man who will be cutting me open should I opt for thyroid removal in Tasmania. His main speciality/earner is gastric banding and he does his consultations in full scrubs. I'm told he's a very good surgeon. He's removed thousands of thyroids. But he's not removing mine, not yet.
We had a good chat though, Dr. Hummer, Alex and myself. I learnt that the parathyroid glands are four little pea-sized spots on the back of the thyroid. I learned that these little glands are very easy to damage as you pull them off the thyroid and try to preserve their neural connections and blood supply. I learned that you really don't want to mess with parathyroid function - that's your calcium, phosphorus and magnesium regulatory system - and I learnt that even if they're successfully preserved in surgery there will be some disruption to function that will likely require monitoring and treatment for the next three months. On the plus side, no more thyroid. On the minus side, three months of feeling crappy, and still a small chance of permanent damage to the parathyroids or the vocal nerves.
To your right is Dr. Keady. She's the nuclear doc. Alex and I had a long and detailed discussion with her about why the last lot of radio-iodine didn't really do much and what our options were. Dr. Keady listened and was thoughtful and took my perspective on board and came to the conclusion that the first dose had at least done something (my goiter is smaller and I had an initial reduction in T3 and T4 levels before spiking again then remaining high), so a much higher second dose should really do the trick. We're talking 600 MBq, the maximum outpatient dose (as opposed to the 250 MBq they gave me last time), and approximately three months to complete thyroid ablation. Provided, of course, that there are no surprises and complications, and even then we're talking perhaps 90 % confidence. And we'll have to do another technetium scan ($270), to make sure there are no more surprises. But there's no cutting, no hospital stay, no anaesthesia, no two weeks off work to heal, no risks to the parathyroids and no $4 000 hospital bill.
So, we have:
So yes, I chose the nuclear option again. It seemed so much more straightforward and if I'm going to feel crappy for three months either way, I'll take the non-bleedy option, thank you.
But of course it's never clear-cut or straightfoward, is it?
I went in for the technetium scan on Wednesday.
Dr. Keady injects me with the technetium, a gamma-emitting tracer that is taken up by the thyroid. It feels cold going in: an odd sensation and not entirely pleasant.
After that it's a fifteen minute wait while my thyroid soaks it all up. Then it's off to the machine to have my pictures taken
Oh dear, that's a very active thyroid. It looks like I've swallowed Tinkerbell!
Uh oh. The scan results show that my thyroid is still crazy-active. Comparison with the images taken before my first dose show there has been very little change. A slight loss of tissue around the edges, and a slight decrease in activity at the lobe junction and that's it, from a dose that would be sufficient to knock most people's thyroids out of action. So it looks as though I have a "leaky" thyroid: one that doesn't hold onto the radio-iodine for long enough for it to do the damage we want it to. Crap.
The Good Doc Nuke is concerned, and is wondering if she should give me a higher dose and keep me as an in-patient, or whether there's some additional therapy she can give me to make the iodine a bit more sticky. She's going to think about it and have a talk to my endocrinologist, and, worst of all, she's looking worried. Radiation therapy just might not work.
But I'm going to go ahead with it anyway. The wheels are in motion: I'm already off my medication and the therapy won't cost me anything - just the scan.
I've been off my medication for three days leading up to the scan, and will be off it for a total of eight days for the scan plus therapy. The doc tells me that, given the level of thyroid activity picked up on the scan, not only will I go hyper-thyric while off my meds (which I was expecting), I will go thyrotoxic. Oh shit. I'm going to be feeling crappy++. Work is warned and I lose a lovely little project I'd been thrilled to be assigned - the deadlines are too tight and the risks too high.
At 2 o'clock today I head back to the hospital to take my radio-active pill.
There's no turning back now, but neither is there any guarantee it's going to work. In three months' time I might be giving Dr. Hummer another call.
My thanks to the staff at Regional Imaging Tasmania - Calvary Hospital for letting us take photos of all the goings on.
It's been an interesting few months. I've been to talk to the doctors at the nuclear clinic, my potential surgeon and my endocrinologist about my options for further treatment. And in the mean time, my thyroid levels have finally come down into the normal range, and even slightly low, for the first time in almost a year. It's been lovely to have a few weeks of feeling like my old self and I have relished every minute of it. But it's over now; I'm on my way up again, but at least time it's intentional.
To your left is Dr. Hummer. Well, that's not really his name (it's Dr. Wilkinson), but it is his obsession. He drives a Hummer (yes, you guessed that much, I know). He gets articles in the newspaper about why he drives a Hummer (click here!). He has model Hummers in his office (it's true!). He even has Hummers on his official office stationary (evidence provided on request). He is also the man who will be cutting me open should I opt for thyroid removal in Tasmania. His main speciality/earner is gastric banding and he does his consultations in full scrubs. I'm told he's a very good surgeon. He's removed thousands of thyroids. But he's not removing mine, not yet.We had a good chat though, Dr. Hummer, Alex and myself. I learnt that the parathyroid glands are four little pea-sized spots on the back of the thyroid. I learned that these little glands are very easy to damage as you pull them off the thyroid and try to preserve their neural connections and blood supply. I learned that you really don't want to mess with parathyroid function - that's your calcium, phosphorus and magnesium regulatory system - and I learnt that even if they're successfully preserved in surgery there will be some disruption to function that will likely require monitoring and treatment for the next three months. On the plus side, no more thyroid. On the minus side, three months of feeling crappy, and still a small chance of permanent damage to the parathyroids or the vocal nerves.
To your right is Dr. Keady. She's the nuclear doc. Alex and I had a long and detailed discussion with her about why the last lot of radio-iodine didn't really do much and what our options were. Dr. Keady listened and was thoughtful and took my perspective on board and came to the conclusion that the first dose had at least done something (my goiter is smaller and I had an initial reduction in T3 and T4 levels before spiking again then remaining high), so a much higher second dose should really do the trick. We're talking 600 MBq, the maximum outpatient dose (as opposed to the 250 MBq they gave me last time), and approximately three months to complete thyroid ablation. Provided, of course, that there are no surprises and complications, and even then we're talking perhaps 90 % confidence. And we'll have to do another technetium scan ($270), to make sure there are no more surprises. But there's no cutting, no hospital stay, no anaesthesia, no two weeks off work to heal, no risks to the parathyroids and no $4 000 hospital bill.
So, we have:
Guaranteed thyroid death + risks of surgery + risks of anaesthetic + risks to parathyroids + risks to vocal nerves + hospitalisation +time off work + whopping great bill + 3 months of feeling crappyVS90% likely thyroid death + a few hours in clinic + 0.01 % increase in risk of throat cancer + no time off work + affordable bill + 3 months of feeling crappy (technetium scan pending)
So yes, I chose the nuclear option again. It seemed so much more straightforward and if I'm going to feel crappy for three months either way, I'll take the non-bleedy option, thank you.
But of course it's never clear-cut or straightfoward, is it?
I went in for the technetium scan on Wednesday.
Dr. Keady injects me with the technetium, a gamma-emitting tracer that is taken up by the thyroid. It feels cold going in: an odd sensation and not entirely pleasant.
After that it's a fifteen minute wait while my thyroid soaks it all up. Then it's off to the machine to have my pictures taken
Oh dear, that's a very active thyroid. It looks like I've swallowed Tinkerbell!
Uh oh. The scan results show that my thyroid is still crazy-active. Comparison with the images taken before my first dose show there has been very little change. A slight loss of tissue around the edges, and a slight decrease in activity at the lobe junction and that's it, from a dose that would be sufficient to knock most people's thyroids out of action. So it looks as though I have a "leaky" thyroid: one that doesn't hold onto the radio-iodine for long enough for it to do the damage we want it to. Crap.
The Good Doc Nuke is concerned, and is wondering if she should give me a higher dose and keep me as an in-patient, or whether there's some additional therapy she can give me to make the iodine a bit more sticky. She's going to think about it and have a talk to my endocrinologist, and, worst of all, she's looking worried. Radiation therapy just might not work.
But I'm going to go ahead with it anyway. The wheels are in motion: I'm already off my medication and the therapy won't cost me anything - just the scan.
I've been off my medication for three days leading up to the scan, and will be off it for a total of eight days for the scan plus therapy. The doc tells me that, given the level of thyroid activity picked up on the scan, not only will I go hyper-thyric while off my meds (which I was expecting), I will go thyrotoxic. Oh shit. I'm going to be feeling crappy++. Work is warned and I lose a lovely little project I'd been thrilled to be assigned - the deadlines are too tight and the risks too high.
At 2 o'clock today I head back to the hospital to take my radio-active pill.
There's no turning back now, but neither is there any guarantee it's going to work. In three months' time I might be giving Dr. Hummer another call.
My thanks to the staff at Regional Imaging Tasmania - Calvary Hospital for letting us take photos of all the goings on.
