Thyroidcancer

[laxmca]

DX with Thyroid cancer in Oct-had surgery and RAI (150 m).  Stage III cancer (papillary).  Should I do anything else?

[utahmomma]

Can I ask, are you 45 or over?  If not, you would be the second person I've heard of diagnosed with Stage III papillary carcinoma younger than 45yrs old - which is completely against all of the staging guidelines available:

http://www.aace.com/pub/pdf/guidelines/thyroid_carcinoma.pdf
http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_thyroid_cancer_staged_43.asp

[utahmomma]

There is a great resource book (it's a bit pricey) that is used by radiologists and endos for thyroid cancer treatment.  It has come in really handy since so many medical "professionals" don't really know that much about this condition:

Essentials of Thyroid Cancer Management (Amdur & Mazzaferri - editors)   This book is not for the weak of heart as it shows some worst case scenarios however it *does* talk about the different scans and treatments and the positives and negatives of them.

That's where I found the information about the PET scans being the gold standard.  I also found that you *shouldn't* have I-131 for yearly scans - I-131 should be used as a treatment dose only.  I-131 stays in the tissues for a very long time and is a beta wave - meaning it stays put and burns.  I-123 is recommended for scan doses - it's an alpha wave (like and x-ray) and emits the radiation out so it can be picked up on scans.  Sometimes when I-131 is used for the scan dose and for a treatment dose, some professionals feel that the treatment isn't as effective because the small, treatment dose may have "stunned" the cancer cells, preventing them from up-taking the larger dose of radiation.

A PET scan would be a really good idea for you and since it's been a few months since your RAI they could schedule one for you soon.

[laxmca]

Thank you! That is helpful information.  I have not had any PET scans, CT scans or chest x-rays and that is what I felt like was missing.  Especially since I had cancer in all the visible lymph nodes that were tested and I hear RAI uptake is not generally good in lymph nodes.

[utahmomma]

He may be asking because Stage II and Stage IV papillary carcinoma can only be diagnosed in those older than 45 years old.   My sister's PC had spread to her liver and breasts but, because she was in her 20s, it was still just Stage II.

What you should be doing now is getting your labs checked every three months (including thyroglobulin or Tg).  You also need to have annual chest x-rays or ultrasounds and either an annual uptake scan, PET scan, or both.  PET scans are now becoming the gold-standard in post RAI thyroid scanning since they detect thyroid cancers which are resistant to iodine uptake.

Keeping a very close eye on your Tg is the key to detecting recurrence or additional thyroid cancer which was not killed with the RAI.

If you do have a recurrence, don't be discouraged.  I had one and my youngest sister (the one with spread to breasts and liver) had three.  She is now 100% cancer free!

Utahmomma
papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma (including the one I mentioned with three recurrences/RAI)
daughter and another sister with precancerous thyroid nodules.

[laxmca]

I think that anyone with Thyroid cancer knows what stage it is.  The pathology report tells you the grading of the tumor and the endo tells you the stage.  If the tumor is larger than 4 centimeters or the tumor is any size and cancer has spread to tissues just outside the thyroid, but not to lymph nodes; or
the tumor is any size and cancer may have spread to tissues just outside the thyroid and has spread to lymph nodes near the trachea or the larynx (voice box), then it is considered Stage III.

My cancer was 4.5cm and had spread to lymph nodes and to tissues just outside the thyroid per the pathology report.  Lymph nodes with detectable cancer were removed.

Why do u ask?

[Justin1967]

How do you know you have Stage III cancer? I thought Pap thyroid cancer is very treatable with RAI