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Update after TT & RAI
Hi All, just wanted to give a postive update and thank everyone for all the great info I got to help in my situation.
Due to what I read here, and links I got here, I was able to have a successful surgery, and a successful and non-instrusive ablative RAI treatment.
In May my new endo that I see for type I Diabetes noticed a couple of nodules on my thyroid during a physical exam. Sent me for ultrasound, and then FNA. Then second opinion. One lab said two nodules were "highly suspicous" for Papillary Carcinoma, the other said suspicious for follicular neoplasm with oncocytic features (with what seemed like a lot less certaintly).
Sweated over whether to have the TT, decided to. Had in at Univ of PA hosptial on 8/30. Turns out two of the nodules were defintely cancerous (Papillary) and one had begun to grow outside the thyroid. Was put on 100 mcg of levothyroxine.
Due to that, age, size of nodules (just over 1 cm each), RAI was recommended.
Was not thrilled about the thought of being hypo for weeks and then the low iodine diet. As it turns out, the radiation oncologist I went to is pretty progressive, and often uses Thryrogen injections instead of levothryroxine withdrawal for RAI Ablative treatment. This is not an FDA approved thing yet. (It's only approved for Diagnostic RAI dose), but his office and the thryogen people work with insurance company to get it approved.
Due to my diabetes and a history of severe depression, I was seen as a good candidate for it. (Never thought I would be so glad to have been depressed!)
I was also worried about impact on salivary glands, which according to two reports I read (from valid sources) can be a common side effect.
I had found two of these pieces of info on this site (THANKS!!!)
Did a write up for my doc based on what I read, including use of amofostine (a radiation protectan) to prevent salivary issues. I presented it to him, and inlcluded the two studies.
He consulted with his folks, and they elected to use it, even though they hadn't before. Mainly because of the respected sources of info.
So I did not have to come off thryoid meds, was able to keep working, and did have to still do the low iodine diet. That was not the end of the world.
Went into the hospital on Thursday 10/25 for 100 milicures of RAI, and the amofostine (and an anti-naseau thing), stayed for less than 24 hours, and am currently at home. On 10/31 I go back to see the radiation level and hopefully be cleared to go back to work, sleep with my husband again, etc.
I feel normal, happy that it wasn't worse, and incredibly grateful for the information available to help make this process better.
Due to what I read here, and links I got here, I was able to have a successful surgery, and a successful and non-instrusive ablative RAI treatment.
In May my new endo that I see for type I Diabetes noticed a couple of nodules on my thyroid during a physical exam. Sent me for ultrasound, and then FNA. Then second opinion. One lab said two nodules were "highly suspicous" for Papillary Carcinoma, the other said suspicious for follicular neoplasm with oncocytic features (with what seemed like a lot less certaintly).
Sweated over whether to have the TT, decided to. Had in at Univ of PA hosptial on 8/30. Turns out two of the nodules were defintely cancerous (Papillary) and one had begun to grow outside the thyroid. Was put on 100 mcg of levothyroxine.
Due to that, age, size of nodules (just over 1 cm each), RAI was recommended.
Was not thrilled about the thought of being hypo for weeks and then the low iodine diet. As it turns out, the radiation oncologist I went to is pretty progressive, and often uses Thryrogen injections instead of levothryroxine withdrawal for RAI Ablative treatment. This is not an FDA approved thing yet. (It's only approved for Diagnostic RAI dose), but his office and the thryogen people work with insurance company to get it approved.
Due to my diabetes and a history of severe depression, I was seen as a good candidate for it. (Never thought I would be so glad to have been depressed!)
I was also worried about impact on salivary glands, which according to two reports I read (from valid sources) can be a common side effect.
I had found two of these pieces of info on this site (THANKS!!!)
Did a write up for my doc based on what I read, including use of amofostine (a radiation protectan) to prevent salivary issues. I presented it to him, and inlcluded the two studies.
He consulted with his folks, and they elected to use it, even though they hadn't before. Mainly because of the respected sources of info.
So I did not have to come off thryoid meds, was able to keep working, and did have to still do the low iodine diet. That was not the end of the world.
Went into the hospital on Thursday 10/25 for 100 milicures of RAI, and the amofostine (and an anti-naseau thing), stayed for less than 24 hours, and am currently at home. On 10/31 I go back to see the radiation level and hopefully be cleared to go back to work, sleep with my husband again, etc.
I feel normal, happy that it wasn't worse, and incredibly grateful for the information available to help make this process better.
I'm *so* happy for you. Cancer is such an amazingly strange and frightening world and knowledge is power! It will take a while for everything to sink in - just be ready for it when it happens.
Let's hope that your 100mCi is the last RAI for you!!! Way to take charge of your health and be proactive.
Welcome to the post TT, post-RAI club!!
Let's hope that your 100mCi is the last RAI for you!!! Way to take charge of your health and be proactive.
Welcome to the post TT, post-RAI club!!
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