CSN Login
Members Online: 7

RAI for the 2nd time

skcalkins
Posts: 39
Joined: May 2010

Looks like I will be having a 2nd dose based on my bloodwork. My doc said my cancer marker after surgery was 911.3 after the RAI it is now 68.4. Based on that he said I either still have cancerous Thyroid tissue or it has spread. So going hypo again, body scan in mid Feb. and dose after. We found this out on Dec. 22nd and up to that point I was feeling pretty positive everything was going to work out, we caught it early. Now I feel like someone punched me in the gut. I have 3 girls and a Grandbaby on the way, I'm so scared that this is going to turn bad. I had lump come up around where the right side of my Thyroid was(which is where the cancer was) about 2 mo. ago. Could it be in the lympthnodes?

sunnyaz
Posts: 582
Joined: Oct 2010

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

skcalkins
Posts: 39
Joined: May 2010

I had my total TT in May 2010 then 100mCI's of RAI. We had put off the total body scan before the 1st RAI because of insurance problems and we couldn't afford it out of pocket and my endo said because of bloodwork he knew we were going to have to do anyway.I wasn't even thinking of another surgery but I'm sure after the full body scan we will be talking about that. I do have a really good endo and the surgeon was great also. We weren't expecting it to be cancer the biopsy 6mo before had come back beign we did the surgery because it was pressing on my windpipe.They did another biopsy while I was still on the operating table, so they took the left side also. My insurance won't pay for the Thyrogen so we have to do the hypo again. This time is going better because I know what to expect.

This has been a really had year we found out I was hypothyroid in June 09, lost my Dad in Nov 09, lost my job Jan 10 and cancer May 10. I haven't been able to work since my surgery because we haven't gotten me on the right dose of synthyroid yet.

I wish you the best of luck and hope they get it this time.

In my prayers,

Shawna Calkins
Tennessee

sunnyaz
Posts: 582
Joined: Oct 2010

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

skcalkins
Posts: 39
Joined: May 2010

Julie,

I'm so happy that things are going s much better for you. I truly believe that we have t look at the positive side of everything...yes even cancer. God doesn't do things to hurt us for me it has brought me closer to God which I will remain so grateful. I can't image going back to the way I was.

Shawna

sunnyaz
Posts: 582
Joined: Oct 2010

Thanks, you are right, the bright side is always the best way. Nobody ever benefits from negativity. Although, I do have my bad days.... It's usually because of some of the people I work with however. I am changing jobs because there are a couple of young girls at my office that drive me crazy! I am moving to an office upstairs where I will be the ONLY Physician's Assistant with only one Physician. So excited! I get more pay, better hours and my own office with a mountain view. The patients are mostly there for weight loss and regular check ups. So much easier than dealing with Geriatrics. It's very hard to see so many patients die of old age on a regular basis. I get so attached to them and then they are gone. Take care and keep in touch!
Warmest wishes,
Julie-SunnyAZ

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network