Reader(s):
Well, thanks to the doctor/detectives at the Mayo Clinic, we have now solved the mystery of the High-TG levels.
Before I reveal the culprit, I would like to describe my Mayo experience from the beginning. Also, like any good mystery writer, I just want to build up some suspense.
First of all, this place is freakin' ginormous. And swanky. Mayo Clinic pretty much takes up all of downtown Rochester, and its various buildings are all connected to each other and to nearby buildings and hotels via an extremely impressive network of underground tunnels (although it's all foot traffic they call it the subway) and above-ground skyways. There are all kinds of cool things interspersed around the first floor and the subway such as a Mayo history display, tons of artwork, a Cancer Education Center that has Yoga and Tai-Chi classes almost every day, and lots of various shops and food stores.
The main building is nineteen stories high. The endocrinology department, where I spent most of my time, is on the eighteenth floor. Despite the huge number of doctors and patients and facilities, everything at Mayo is super-efficient. Yesterday I had one of the fastest blood tests of my life, despite the fact that there were at least 20-30 people in the waiting room with me. My procedures today were very efficient also. Overall my mom and I were extremely impressed about how well everything was done. It's pretty clear why this place has such a great reputation.
So now that we have the setting down, I'll explain what actually happened.
When I first met with the doctor yesterday morning, he basically told me that he didn't think having an RAI treatment at this stage is a good idea. Since we would be essentially just treating a number (my TG level) without any other evidence of cancer, and since I'm young and my type of cancer is very slow-growing, he told us that he would prefer to wait and see what develops rather than give me a high dose of RAI without knowing if it would even be effective, especially since high RAI doses can have negative side effects in the long term.
He ordered a blood test and an ultrasound, and told us that their radiology department often finds things when previous scans haven't. So I had a blood test yesterday and an ultrasound this morning. The ultrasound did show two suspicious lymph nodes, and I had one of them biopsied right away. When I met with the doctor again this afternoon he told us that the biopsy was positive. Which means we have now found our culprit. It's a sneaky little node on the left side of my neck near my collarbone, right near my scar. Tricky little bastard.
One of the things the doctor explained was that because papillary thyroid cancer is so slow-growing, cancerous lymph nodes can take a long time to develop to a size that can be seen and/or treated. Yesterday he told us we should start thinking of my cancer as a chronic disease, rather than something that needs to be gotten rid of urgently like other cancers. I still don't know how I feel about the idea of having to go through this again and again for the rest of my life. I suppose it's better than having a bad long-term prognosis, but it also means I have to keep waiting around and that's pretty much my least favorite thing ever. Patience has never been a virtue that I have possessed.
Nevertheless, we have decided to wait for another few months or so before we take care of the aforementioned lymph node. Normally I would have it removed surgically, but since I just had surgery in April the doctor said he would prefer to wait at least a year before having another one. And I'm certainly not thrilled about going under the knife again so soon.
Also, Mayo has recently pioneered a procedure called alcohol ablation that they've been using to get rid of metastatic thyroid cancer lymph nodes in the neck. From what I understand, it involves using alcohol to blow up the cancerous lymph nodes rather than removing them surgically. Mayo is one of the only places in the country that does this procedure, and the doctor said he would talk to the radiology department about whether this is a possibility for me. If so, I'll probably come back to Mayo within the next six months or so and have that done.
No matter what, I probably won't have RAI again. At least not for a long time. The doctor said that lymph nodes usually don't respond well to radioactive iodine, and since mine didn't show up on the RAI scan last month it doesn't seem likely that they would be affected by an RAI treatment anyway. I'm pretty happy that I don't have to go through it again. All my other doctors have talked about how it's a magic bullet and it's super effective for thyroid cancer and blah blah blah, but I kind of think it sucks. At least when I'm going through it. So good riddance, RAI, LID, and all you other stupid un-fun acronyms.
Unfortunately that does mean I won't be radioactive again for some time. I might have to change my pen name. Any ideas? Thyroid Diva, maybe? Papillary Princess? Given that I've now had three biopsies in the past year I've been considering calling myself the Biopsy Queen. But maybe that one's not so good.
For now, I'm going to go back to my life, but I'll probably be back here in Rochester soon. And I will try to keep updating about cancer-related issues when they arise and/or whenever I actually have time to sit at my computer and write things.
Homeward Bound,
RG
Showing posts with label biopsy results. Show all posts
Showing posts with label biopsy results. Show all posts
9/24/2010
8/13/2010
Phew.
Dear reader(s):
Good news! Biopsy came back clean. Now the blog gets boring again.
Still basically just...hanging around, waiting. While I am, of course, glad that everything turned out okay, I admit that I'm a bit annoyed that this all happened for no reason. But...oh well.
My doctor's assistant (who has become my BFF of all things thyroid-related) said they'd call me on Monday to tell me when the imaging place can reschedule my RAI. Because god forbid anyone would throw a cancer patient a freakin' bone and actually do some work on a weekend. *LE SIGH* Until then, I'll still be here in limbo, dreaming dreams of milk and cheese and chocolate as I get hypo-er and hypo-er.
This would probably be a good time to explain what exactly I mean when I say that I'm "hypo", especially since I've been getting asked a lot lately. "Hypo" is just the fun thyca patient slang term for "hypothyroid". And of course, "thyca" is our fun slang term for "thyroid cancer". Cancer patients like abbreviations. Try to keep up. Anyway, hypothyroid is what they call it when your thyroid (or in my case, large empty wasteland where my thyroid used to be) isn't producing enough thyroid hormone and is causing all sorts of fun side effects for you, the thyroid-challenged.
Web-MD lists some of these side effects as follows:
My mom asked me the other day what it actually felt like to be hypo. I told her it's kind of like that feeling you have when you have a really bad cold, where your whole body feels wrecked and exhausted all the time and you sort of generally feel like you've been hit by a truck. That, mixed with the mood swings, depression, being cold all the time, and having a sort of mental hazy-ness should give you a general idea of how I feel.
No, it's probably not nearly as bad as the side effects of chemo. But it's also not a cake walk, either. For a point of reference, I will explain TSH levels. Thyroid Stimulating Hormone (TSH) is produced by the pituitary gland and it, in turn, causes the thyroid to release T3 and T4, which, in my understanding, are the hormones that do all the work, such as regulating metabolism and all that fun stuff. So TSH levels are used to measure how overactive or underactive a person's thyroid is. If your TSH is low, you're hyPERthryoid and are overproducing hormone, if it's high you're hyPOthyroid, like me, and are underproducing. Yes, this does seem backward, and no, despite having asked my endocrinologist multiple times I still don't really understand why. Just...low TSH means hyper, high TSH means hypo. Anyway, my point is that the "normal" TSH range for adults is about 0.4-4.5. Mine, as of Tuesday's blood test, was 141. That, dear reader(s), is very, very, hypo.
I also found out from the doctor who met with me before my very first RAI that were I to stop taking my thyroid meds for a very very long time, say 3-4 months, I would eventually die. This is why I am constantly annoyed at the fact that my insurance company only covers a dollar - ONE dollar - of my thirty dollar hormone replacement meds every month, as I need to take them for the rest of my life and quite literally need them to live. I don't know exactly which medications these companies have decided are necessary enough for them to pay for, but apparently my life-giving synthroid does not qualify. *LE SIGH*
So, hopefully that explains the hypo-ness. I can, of course, answer any other questions about it in the comments (which, btw, are easier for me to receive here on the actual blog than on Facebook), or both thyca.org and webMD are pretty good ways to find info.
Also thanks for everyone's concern and for trudging through my long-winded writings.
Hypothyroidcally yours,
RG
Good news! Biopsy came back clean. Now the blog gets boring again.
Still basically just...hanging around, waiting. While I am, of course, glad that everything turned out okay, I admit that I'm a bit annoyed that this all happened for no reason. But...oh well.
My doctor's assistant (who has become my BFF of all things thyroid-related) said they'd call me on Monday to tell me when the imaging place can reschedule my RAI. Because god forbid anyone would throw a cancer patient a freakin' bone and actually do some work on a weekend. *LE SIGH* Until then, I'll still be here in limbo, dreaming dreams of milk and cheese and chocolate as I get hypo-er and hypo-er.
This would probably be a good time to explain what exactly I mean when I say that I'm "hypo", especially since I've been getting asked a lot lately. "Hypo" is just the fun thyca patient slang term for "hypothyroid". And of course, "thyca" is our fun slang term for "thyroid cancer". Cancer patients like abbreviations. Try to keep up. Anyway, hypothyroid is what they call it when your thyroid (or in my case, large empty wasteland where my thyroid used to be) isn't producing enough thyroid hormone and is causing all sorts of fun side effects for you, the thyroid-challenged.
Web-MD lists some of these side effects as follows:
- Feeling tired, weak, or depressed.
- Dry skin and brittle nails.
- Not being able to stand the cold.
- Constipation.
- Memory problems or having trouble thinking clearly.
- Heavy or irregular menstrual periods.
My mom asked me the other day what it actually felt like to be hypo. I told her it's kind of like that feeling you have when you have a really bad cold, where your whole body feels wrecked and exhausted all the time and you sort of generally feel like you've been hit by a truck. That, mixed with the mood swings, depression, being cold all the time, and having a sort of mental hazy-ness should give you a general idea of how I feel.
No, it's probably not nearly as bad as the side effects of chemo. But it's also not a cake walk, either. For a point of reference, I will explain TSH levels. Thyroid Stimulating Hormone (TSH) is produced by the pituitary gland and it, in turn, causes the thyroid to release T3 and T4, which, in my understanding, are the hormones that do all the work, such as regulating metabolism and all that fun stuff. So TSH levels are used to measure how overactive or underactive a person's thyroid is. If your TSH is low, you're hyPERthryoid and are overproducing hormone, if it's high you're hyPOthyroid, like me, and are underproducing. Yes, this does seem backward, and no, despite having asked my endocrinologist multiple times I still don't really understand why. Just...low TSH means hyper, high TSH means hypo. Anyway, my point is that the "normal" TSH range for adults is about 0.4-4.5. Mine, as of Tuesday's blood test, was 141. That, dear reader(s), is very, very, hypo.
I also found out from the doctor who met with me before my very first RAI that were I to stop taking my thyroid meds for a very very long time, say 3-4 months, I would eventually die. This is why I am constantly annoyed at the fact that my insurance company only covers a dollar - ONE dollar - of my thirty dollar hormone replacement meds every month, as I need to take them for the rest of my life and quite literally need them to live. I don't know exactly which medications these companies have decided are necessary enough for them to pay for, but apparently my life-giving synthroid does not qualify. *LE SIGH*
So, hopefully that explains the hypo-ness. I can, of course, answer any other questions about it in the comments (which, btw, are easier for me to receive here on the actual blog than on Facebook), or both thyca.org and webMD are pretty good ways to find info.
Also thanks for everyone's concern and for trudging through my long-winded writings.
Hypothyroidcally yours,
RG
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