new here - RAI

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new here - RAI

by RAM7007 on Fri Mar 08, 2019 07:19 PM

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Hi,

I ran across this site in search of Radioactive Iodine information. Brief story - female 41, I noticed a small tiny bump on my neck with my head tilted back while washing last September 2018. The bump grew signiificantly during 2 months from finding it to surgery. Ultrasound showed a large nodule on the Isthmus. I elected to forgo a needle biposy. By the time my surgery occurred in late November the bump was now to the point of interferring with swallowing and very visible externally. My doctor was fully expecting a cyst given how quickly it grew. During surgery the preliminary report findings stated there was a more than 80% chance the tissue removed was cancer along with the small nodules that were on each lobe. The whole thyroid was removed. Pathology came back as papillary thyroid cancer in every nodule along with a lymph node that was stuck to the thyroid as well that was cancer positive upon testing.

My thyroglobulin was at 0.2 at my last bloodwork check late January. I have been told that due to the lymph nodes already being involved RAI is still recommended. I have many mixed feelings about RAI.

What are long term consequences, ramifications, side effects? I.E. how likely is it to end up with another cancer from having taken RAI years down the road?

As my family put it, "if we cannot be around you or share anything with you, what is the RAI going to do to you?"

I have been to 2 doctors in regards to treatment (plus my ENT who removed the thyroid). 1 endocrinologist significantly downplayed all the negatives & risks of RAI even stating I only needed to avoid my family for "just a few days" while the other stated facts expressing a great need to do RAI quickly with the standard "quarantine" guidelines.

I currently have the Thyrogen shots scheduled starting the 18th with RAI on the 20th. Trying to schedule the PET scan currently. I started the LID diet yesterday. I generally live on dairy, carbs and have chocolate daily with an occasional salad. This whole LID of 4 servings of grains and only 6 ounces of meat with veggies, fruit and unsalted nuts might be worse than the cancer...I am kidding but I am on day 2 of LID and struggling.

Any wisdom, thoughts, advice, input, is appreciated.

Thanks, Rachael

RE: new here - RAI

by KimmyAnn on Sat Mar 09, 2019 12:55 AM

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Hi Rachel, I am new to this site as well and just had my thyroidectomy on 2-13. I get my first labs next week to see if I need RAI and to check for mets/left over thyroid tissue. My husband asked the exact same question your family did! I have read a lot about RAI but will surely research much more if I am told I need it. I will follow this post to see what others have to say.

Best of luck to you, I hope it all works out for you :)

RE: new here - RAI

by butterfly501 on Sun Mar 10, 2019 02:27 AM

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On Mar 08, 2019 7:19 PM RAM7007 wrote:

Hi,

I ran across this site in search of Radioactive Iodine information. Brief story - female 41, I noticed a small tiny bump on my neck with my head tilted back while washing last September 2018. The bump grew signiificantly during 2 months from finding it to surgery. Ultrasound showed a large nodule on the Isthmus. I elected to forgo a needle biposy. By the time my surgery occurred in late November the bump was now to the point of interferring with swallowing and very visible externally. My doctor was fully expecting a cyst given how quickly it grew. During surgery the preliminary report findings stated there was a more than 80% chance the tissue removed was cancer along with the small nodules that were on each lobe. The whole thyroid was removed. Pathology came back as papillary thyroid cancer in every nodule along with a lymph node that was stuck to the thyroid as well that was cancer positive upon testing.

My thyroglobulin was at 0.2 at my last bloodwork check late January. I have been told that due to the lymph nodes already being involved RAI is still recommended. I have many mixed feelings about RAI.

What are long term consequences, ramifications, side effects? I.E. how likely is it to end up with another cancer from having taken RAI years down the road?

As my family put it, "if we cannot be around you or share anything with you, what is the RAI going to do to you?"

I have been to 2 doctors in regards to treatment (plus my ENT who removed the thyroid). 1 endocrinologist significantly downplayed all the negatives & risks of RAI even stating I only needed to avoid my family for "just a few days" while the other stated facts expressing a great need to do RAI quickly with the standard "quarantine" guidelines.

I currently have the Thyrogen shots scheduled starting the 18th with RAI on the 20th. Trying to schedule the PET scan currently. I started the LID diet yesterday. I generally live on dairy, carbs and have chocolate daily with an occasional salad. This whole LID of 4 servings of grains and only 6 ounces of meat with veggies, fruit and unsalted nuts might be worse than the cancer...I am kidding but I am on day 2 of LID and struggling.

Any wisdom, thoughts, advice, input, is appreciated.

Thanks, Rachael

The radioactive iodine is going to ablate any remaining thyroid tissue.  Other living beings should maintain 6 feet of distance from you for the first couple days; simply to limit their exposure to radiation.  It's the same concept as shielding all others from radiation during xrays. 

Secondary cancers arising from RAI radiation is marked at 800+ mCi; which is a huge dose and would only occur for people needing multiple rounds of I-131.  The majority recieving I-131 only need one treatment of a low dose to ablate any remaining thyroid tissue.

The LID is aweak recommendation, based on low-quality evidence; so take that as you will.

Good luck!

RE: new here - RAI

by butterfly501 on Sun Mar 10, 2019 02:33 AM

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On Mar 08, 2019 7:19 PM RAM7007 wrote:

Hi,

I ran across this site in search of Radioactive Iodine information. Brief story - female 41, I noticed a small tiny bump on my neck with my head tilted back while washing last September 2018. The bump grew signiificantly during 2 months from finding it to surgery. Ultrasound showed a large nodule on the Isthmus. I elected to forgo a needle biposy. By the time my surgery occurred in late November the bump was now to the point of interferring with swallowing and very visible externally. My doctor was fully expecting a cyst given how quickly it grew. During surgery the preliminary report findings stated there was a more than 80% chance the tissue removed was cancer along with the small nodules that were on each lobe. The whole thyroid was removed. Pathology came back as papillary thyroid cancer in every nodule along with a lymph node that was stuck to the thyroid as well that was cancer positive upon testing.

My thyroglobulin was at 0.2 at my last bloodwork check late January. I have been told that due to the lymph nodes already being involved RAI is still recommended. I have many mixed feelings about RAI.

What are long term consequences, ramifications, side effects? I.E. how likely is it to end up with another cancer from having taken RAI years down the road?

As my family put it, "if we cannot be around you or share anything with you, what is the RAI going to do to you?"

I have been to 2 doctors in regards to treatment (plus my ENT who removed the thyroid). 1 endocrinologist significantly downplayed all the negatives & risks of RAI even stating I only needed to avoid my family for "just a few days" while the other stated facts expressing a great need to do RAI quickly with the standard "quarantine" guidelines.

I currently have the Thyrogen shots scheduled starting the 18th with RAI on the 20th. Trying to schedule the PET scan currently. I started the LID diet yesterday. I generally live on dairy, carbs and have chocolate daily with an occasional salad. This whole LID of 4 servings of grains and only 6 ounces of meat with veggies, fruit and unsalted nuts might be worse than the cancer...I am kidding but I am on day 2 of LID and struggling.

Any wisdom, thoughts, advice, input, is appreciated.

Thanks, Rachael

Also, the I-131 should be administered by a radiologist, not an endo.  I would suggest speaking with the administering radiologist; not the endo.

RE: new here - RAI

by ToddlerFather on Tue Mar 12, 2019 05:41 PM

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Even though RAI will not cure every possible cancer, the guidelines establishing where it is worthwile are clear in including your case as one to do it. 

The little time of isolation is a very minor price to pay for the added chances of recovery. And it was funny to me when I accidentally came near a physicist and he jumped back in fear... I felt like Spiderman. ;-)

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