Dear reader(s),
I'm sure not many people are still checking this, since I haven't posted in awhile. There really hasn't been anything to report medically for the past few months, and I'd rather stay on-topic than use this blog to discuss my personal life. But, fortunately (?), I'm back at Mayo Clinic now doing more interesting things for y'all to read about.
My family and I drove up to Rochester on the 27th and have been staying here for the past few days. We checked out the Mall of America, did a lot of shopping, saw a cool aquarium. Yesterday I met with my Mayo Endo, and today I had my first of two rounds of alcohol ablation. My coworker referred to it a couple weeks ago as an Alcoholic Vampire bite, which makes me wonder what an Alcohol Vampire would be like. Would it be like a normal vampire, but really drunk? Since vampires are technically dead and don't have blood, how would you gauge its BAC? Or would their blood simply be replaced by alcohol? Maybe they just turn all the water in your body to wine, like Jesus. Or... was Jesus an Alcohol Vampire himself? 0.0
Maybe I should stop thinking about this before I'm struck down for Blasphemy.
Okay, so, the actual event. Essentially, the procedure was pretty similar to what they do when I have a needle biopsy. I went up to Radiology, they put me in an ultrasound room and took an ultrasound of my neck, then the radiologist numbed me up and stuck a needle in my neck. With the biopsy, they do usually 6-10 stabs to collect tissue - they always say they're gonna do 4-6 but it's usually 8-10. This time it was just one poke, but the needle was in there a lot longer, and the radiologist was injecting alcohol into one of my lymph nodes the whole time. I was told the alcohol would probably burn, and it did, but it wasn't as bad as I thought it would be. I've had worse migraines. My neck is pretty sore right now, but not much more than it usually is after a biopsy.
This is definitely vastly preferable to surgery or I-131 therapy. No incisions and I get to eat whatever I want. :) And speaking of radioactive iodine, I've found some info I think is interesting - and a bit confusing.
In the main Mayo building they have a Cancer Education Center, which is kinda like a little library with books and pamphlets and things about cancer (my brother even found a book called "My Brother or Sister Has Cancer - A Book For Teens", which I told him to check out but he said he can't read...). They let me take a book out last night about thyroid disease, and I read the chapter about thyroid cancer specifically. It was written by one of the Mayo Endos (not mine) and an endo from Edinborough (which seems to be a center of a lot of thyroid research).
In the section on radioactive iodine treatment they said - rather emphatically - that radioactive iodine should be considered as an option following surgery but should really only be used in a select number of cases, and also mentioned that it can potentially lead to other cancers later in life. That last part I already knew, but I was surprised to hear (see?) a doctor recommend using radioactive iodine sparingly.
Literally every thyroid cancer patient I have ever met or spoken to has had RAI after their initial surgery. When I was diagnosed my doctors called it a "silver bullet" and praised it as a wonderful magic cure that would wipe out my cancer and end poverty and bring world peace. Obviously it hasn't actually done any of those things (yet). The book also said what my Mayo Endo told me, which is that radioiodine is often ineffective against lymph nodes with papillary cancer in them - like mine.
So it would seem that opinions about this "silver bullet" range pretty widely among endocrinologists, which made me wonder why I was led to believe, two years ago, that it was the answer to all my prayers. Curious, no? As much as I like my regular endo, this discovery makes me really glad I decided to get two opinions - obviously if there are two sides to this story I want to hear them both.
And I'm definitely doing more research from now on before I swallow radioactive materials.
Tomorrow is round 2 of Alcoholic Vampire Bite. I hear it's supposed to hurt even more since my neck is already sore from the first one. I'll update you, dear reader(s), with detailed descriptions of my pain, since I know that's what you all want to hear.
And if I turn into an Alcohol Vampire, lock your doors.
Not-so-drunkenly yours,
RG
Showing posts with label alcohol ablation. Show all posts
Showing posts with label alcohol ablation. Show all posts
12/29/2010
9/24/2010
Mayo Magic
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
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
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