RAI for the 2nd time

sunnyaz said:

RAI for the 2nd time
Hi skcalkins,

I am having my second dose of RAI as well. I had my TT in November 2009. Then metastasis to the Lymph nodes in June 2010. RAI done on September 1st, 2010. The ENT surgeon missed the major node on the second surgery in June (right side neck dissection) and I had to have a third surgery on December 17th to remove that node and two others that were hiding behind it that were cancerous. For obvious reasons I have a new surgeon now. I go for my second RAI on February 4th. First dose was 80.3 Mci's and second dose will be between 150 and 200 mCi's; much more aggressive treatment. Had my Endocrinologist known the cancer was still there, they would not have given me the first dose of RAI but instead removed the cancer and then given me the first round of RAI. My Thyroglubulin was undetectable after my third surgery so they feel that this RAI treatment will finish the job this time. I do have extenuating circumstances however. I am B-RAF positive which makes my cancer more aggressive and harder to treat.

With a Thyroglobulin level of 68.4 you probably have cancer somewhere. Most likely the Lymph nodes because that is where it usually goes first. There are sections of the neck that it usually invades first. Mine was in section 6. Typically it will go to 5 and 6 and then to section 2, 3 and 4 (outer part of the neck). I would think they would try to find and remove the cancer before doing your second RAI in order to avoid having to do a third RAI. My Oncologist told me that RAI is designed to kill Thyroid tissue and microscopic cancer cells only. Tumors are not reduced or cured by RAI. They won't uptake the Iodine. I would get a second opinion before doing RAI to see if they can find the cancer and remove it first rather than having to repeat RAI for a third time. If they can't find it using a Sonogram, they can do a PET scan. Just my opinion.

Regarding going Hypo; I was given a Thyrogen injection 24 and 48 hours before my RAI and did not have to stop medications and go Hypo. I will be doing this again pending insurance authorization on the 2nd and 3rd of February. Ask about this option. Even if you have to pay out of pocket for it, it may be worth it not to have to go Hypo. I simply can't afford to stop working in order to go Hypo. I work in the Medical field and I can't risk harming a patient because I can't think straight. I also can't afford to take more time off of work. I used up all of my PTO for the second surgery (that the dumba-- first surgeon !@&*-up) and the first RAI (which was useless with cancer still present). If you don't work or don't need to work going Hypo may be okay for you. There is some question as to whether or not it is better to go Hypo or use the Thyrogen injections. The jury is still out on this; so to speak. I was able to uptake with no issue using the Thyrogen even with a B-RAF mutation gene. I feel that making patients go Hypo is simply barbaric in this day and age.

God Bless and Best Wishes,
Julie-SunnyAZ

sunnyaz said:

Hard Year
Hi Shawna,

I am so sorry you had to go through all of that. I lost my dad in November of 2004 and it seems like yesterday. I feel your pain. In the last fifteen months I was diagnosed with cancer (October of 2009), lost my business because of the economy dive (I live in Arizona,one of the hardest hit) lost my home to foreclosure, my daughter was diagnosed with a form of Epilepsy and to top it all I had to go back to college to revocate. The year before my diagnosis my marriage was failing as well. The good news is that I have almost conquered the cancer, I have a better home than the one I lost, my daughter hasn't had a seizure in a little over one year (on her medication) and I have a stable job in the Medical field. Having this job also gives me inside information on the best possible treatments, doctors and facilities. My marriage is now strong and thriving. I have so many angels standing by my side and I feel so blessed. My husband and I also started a new business that we like much better and it is starting to build into a very stable extra income for us to help with our debt.

I believe things will be okay for you too. It takes time and patience. I will keep you in prayer with my other friends on the site.

Blessings,
Julie-SunnyAZ