# Thyrogen- 25 Years Old Papillary Carcinoma Spreading



## Optimistic CJ (May 30, 2011)

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.


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## Z mann R2 (Mar 24, 2011)

Well you are in a good place to gather info and get support from good people. Many of us are right with you. I myself am 29 with follicular carcinoma in my thyroid so just know you aren't alone and never hesitate to ask any questions and just know that you are in very good hands with your docs and you have your youth on your side. It's gonna be just fine, just gotta get through these treatments and you'll be back to yourself in no time!


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## Andros (Aug 26, 2009)

Z mann R2 said:


> Well you are in a good place to gather info and get support from good people. Many of us are right with you. I myself am 29 with follicular carcinoma in my thyroid so just know you aren't alone and never hesitate to ask any questions and just know that you are in very good hands with your docs and you have your youth on your side. It's gonna be just fine, just gotta get through these treatments and you'll be back to yourself in no time!


You are lucky they found it. This is the most important thing. You are going to come through like a champ and will back on that surf board in no time at all.

We are here for you! Did you have your surgery yet and are waiting to do RAI?


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## midgetmaid (Jul 22, 2010)

RAI for thyroid cancer does not hurt the reproductive system, so that shouldn't prevent future pregnancies. I hope everything comes together soon for you!

Renee


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## Optimistic CJ (May 30, 2011)

Thanks so much for the replies. That is comforting to know about the reproductive system. I am still feeling these lumps...but how can I if my thyroid is gone. I haven't had my RAI because I was so hyperactive. Its going to take awhile for my TSH levels to go hypo. They need me to get the thyrogen shots because of that and they aren't available right now. I'm scared. Trying to stay positive, but its so hard. I know I need these treatments ASAP, yet myself, nor my doctor, can do anything at the moment but wait. I'm scared its spreading. Is there anyway of knowing how fast it spreads? I've also felt pain in the right side of my chest cavity since feb of this year....could it have spread to the lungs already? How would I know? One of the lumps I've pointed out to my endo before my TT and he said not to worry about it. However, I didn't feel it agaun until recently and its bigger. Could that be a possible node it spread to? Sorry so many questions. Still so confused. I think I'm really going to need you guys.


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## lainey (Aug 26, 2010)

Being hypothyroid, following the low iodine diet (if they give you one) all help the deprive the thyroid tissue that may be left (and even if it's cancer, it's originally thyroid tissue) of iodine.

The great thing about thyroid tissue is, no matter where in your body, because it uses iodine, it attracts the iodine 131 like a magnet.

This is what makes thyroid cancer so treatable in the first place.

Maybe you will go hypo on your own much faster than everyone thinks--when are they doing blood testing to find out how your levels have changed since the surgery?


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## Andros (Aug 26, 2009)

Optimistic CJ said:


> Thanks so much for the replies. That is comforting to know about the reproductive system. I am still feeling these lumps...but how can I if my thyroid is gone. I haven't had my RAI because I was so hyperactive. Its going to take awhile for my TSH levels to go hypo. They need me to get the thyrogen shots because of that and they aren't available right now. I'm scared. Trying to stay positive, but its so hard. I know I need these treatments ASAP, yet myself, nor my doctor, can do anything at the moment but wait. I'm scared its spreading. Is there anyway of knowing how fast it spreads? I've also felt pain in the right side of my chest cavity since feb of this year....could it have spread to the lungs already? How would I know? One of the lumps I've pointed out to my endo before my TT and he said not to worry about it. However, I didn't feel it agaun until recently and its bigger. Could that be a possible node it spread to? Sorry so many questions. Still so confused. I think I'm really going to need you guys.


Oh, I would insist on MRI of the chest, lungs, mammaries..................the whole thing. Please make arrangements to do this. I am not sure MRI would be the thing; maybe CAT scan. Whichever one is appropriate.


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## midgetmaid (Jul 22, 2010)

Lumps that are enlarging need looked into. Get a second opinion if necessary.

Renee


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## Z mann R2 (Mar 24, 2011)

Andros said:


> You are lucky they found it. This is the most important thing. You are going to come through like a champ and will back on that surf board in no time at all.
> 
> We are here for you! Did you have your surgery yet and are waiting to do RAI?


yep, surgery went well a few months back and my RAI will be on the week of June 13th....


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