Thyrogen- 25 Years Old Papillary Carcinoma Spreading

[Optimistic CJ]

Hello. I am new to this thread. I'm going to try and make this short, but I'd really appreciate any comments/advise/similar struggles.

I just had a total thyroidectomy due to a hyperactive malignant nodule. My doctors say that it is papillary carcinoma and that it has already spread to my lymph nodes. They told me that because of my age I am still considered stage 1 (which is wonderful!). However, there is still an urgency to get the RAI treatment because the cancer has (is still?) spreading.

My doctors told me that normally they'd let the patients go hypo on their own before they got the RAI treatment, but they don't want to wait with me because it has/is spreading and because of my family history of cancer. However, my case is a little different. My nodule was incredibly hyperactive, so, my TSH levels would take a long time (they're predicting) to go up. For example, I was on methimizole (supposed to slow that hyperthyroid down and can sometimes make people go hypo). However, even with the 2 months I was on it my TSH levels were still .00004!

But, doctors had an easy solution: I would just get the Thyrogen injections (brings TSH levels up instantly so that you can have the treatment). I would need 2 injections (1 a day for 2 consecutive days) and then on the third day I could get my treatment. Whaalaa! I was so elated to hear this news. BUT, of course there's a "but", apparently there is a nationwide shortage on the drug itself. They company says the shortage would last until mid-June, but that could turn into mid-July etc. etc. See these links:
http://www.thyrogen.com/pdfs/supplyupdate-2011.pdf
http://www.nytimes.com/2011/05/27/health/27drug.html

I'm very worried, upset, emotional, feeling horrible, have so many questions and what ifs. Is any one else going through this? I think it is so unfair that cancer patients have to wait for something that actually is there, but just unreachable. I don't know what to do. I'm only 25 years old and I feel like I am 60. This was my first year as a teacher and boy was it a rough one...I'm so thankful to finally have answers. I really am. But I feel as though if it's not one thing it's another.

My family and fiancée (got engaged this past Dec. before knowing any of this) are also so worried about me. It eats me up inside knowing how much they worry. Especially my mom. I wish I could just take her pain away. I want to get better so she can feel better.

I'm scared that during this time I have to wait, it will spread to other parts of my body. If it does/has that means more radioactive iodine right? I want to have kids and I'm actually crying right now because I'm afraid I won't get that chance. Can't radioactive iodine hurt my reproductive system?

I'm so scared.

[Andros]

Hello. I am new to this thread. I'm going to try and make this short, but I'd really appreciate any comments/advise/similar struggles.

I just had a total thyroidectomy due to a hyperactive malignant nodule. My doctors say that it is papillary carcinoma and that it has already spread to my lymph nodes. They told me that because of my age I am still considered stage 1 (which is wonderful!). However, there is still an urgency to get the RAI treatment because the cancer has (is still?) spreading.

My doctors told me that normally they'd let the patients go hypo on their own before they got the RAI treatment, but they don't want to wait with me because it has/is spreading and because of my family history of cancer. However, my case is a little different. My nodule was incredibly hyperactive, so, my TSH levels would take a long time (they're predicting) to go up. For example, I was on methimizole (supposed to slow that hyperthyroid down and can sometimes make people go hypo). However, even with the 2 months I was on it my TSH levels were still .00004!

But, doctors had an easy solution: I would just get the Thyrogen injections (brings TSH levels up instantly so that you can have the treatment). I would need 2 injections (1 a day for 2 consecutive days) and then on the third day I could get my treatment. Whaalaa! I was so elated to hear this news. BUT, of course there's a "but", apparently there is a nationwide shortage on the drug itself. They company says the shortage would last until mid-June, but that could turn into mid-July etc. etc. See these links:
http://www.thyrogen.com/pdfs/supplyupdate-2011.pdf
http://www.nytimes.com/2011/05/27/health/27drug.html

I'm very worried, upset, emotional, feeling horrible, have so many questions and what ifs. Is any one else going through this? I think it is so unfair that cancer patients have to wait for something that actually is there, but just unreachable. I don't know what to do. I'm only 25 years old and I feel like I am 60. This was my first year as a teacher and boy was it a rough one...I'm so thankful to finally have answers. I really am. But I feel as though if it's not one thing it's another.

My family and fiancée (got engaged this past Dec. before knowing any of this) are also so worried about me. It eats me up inside knowing how much they worry. Especially my mom. I wish I could just take her pain away. I want to get better so she can feel better.

I'm scared that during this time I have to wait, it will spread to other parts of my body. If it does/has that means more radioactive iodine right? I want to have kids and I'm actually crying right now because I'm afraid I won't get that chance. Can't radioactive iodine hurt my reproductive system?

I'm so scared.

I am so sorry for what you have been through. It is scary but it sure sounds like you have an awesome medical team on your side.

How did you get diagnosed? What a lucky thing, actually. Imagine NOT knowing!

What has your doctor told you regarding the next step if Thyrogen is not available?

Welcome to the board and I am going to say a prayer for you that something comes through for you in the very near future.

You have been though a lot for such a young age.

http://img.photobucket.com/albums/v129/LuLu1471/066.gif

[Optimistic CJ]

Thanks I really appreciate your kind words. I was diagnosed by my PCP who just did a random blood test. I went in because my side was hurting and he said we hadn't done labs in over a year...when he got the results back he was kind of baffled. So he redrew my blood to make sure it wasn't an error and then did a complete thyroid panel as well. As I said before, this is my first year of being a teacher (I am the Science Lab teacher at my elementary school so I see ALL grades- every class). I was told by other teachers that the first year is always the hardest and that I am probably so tired and stressed because it's my first year..."first year" this and "first year" that. I actually believed it. I lost about 40 lbs in 5 months, weight has always yo-yo'd my whole life, so I just thought maybe I was just stressed. My mother told me I needed to go to the doctor. I did (actually for that side pain...which is still there...weird) and that's how. Then I saw some endo's and had biopsies, scans, the whole nine. I'm actually a very rare case. My endo will be writing a case study about me. No one thought my nodule was malignant. There is only less than a 1% chance for a "hot" nodule to be cancerous...so they weren't really worried about that...but I seem to just keep amazing them. I was diagnosed with panic disorder when I was about 19 years old and I knew that it was something a little more than panic disorder. I'm positive this has had something to do with it. For a while doctors would see "panic disorder" and brush me under the mat. I hated that. I hated doctors for the longest time. No one ever took me seriously. So for a long time I really knew something was wrong but never had any answers, but FINALLY I do. My doctor and his nurses/staff are amazing and are doing everything in their power to get me the shots asap. It's just not known "for sure" when that will be. He said he is willing to wait until August before we go the old fashioned way. However, I did tell him mentally that is going to be really hard on me. But what else can I do? There is nothing else to do. So right now I'm on a really low dose of synthroid that way if I have to go hypo on my own it hopefully wont take as long and I get somewhat of the emotional (and physical) relief while we wait. It's just so hard. I have always felt like maybe I was lazy. I never knew how people always seemed to have it so together where as I am struggling to even get ready in the morning. I feel like the random bursts of energy I used to get were the only thing that kept me "going", but after that I was just exhausted. Right now my body is exhausted. Physically and mentally.