rai with thyroglobulin at 0

went to the hospital to get my RAI today. they ordered the wrong dose, so now i have to return tomorrow.

i did get good news, though. my thyroglobin was reading zero.

i did have a TT and a few lymphnodes with cancer, including one that was far away from the rest, and my thyroid.

i'm almost thinking to just cancel the procedure tomorrow.

i've been off synthroid since july 29th, and if my thyroglobin is 0, doesn't that mean that there are either no thyroid cells left or at least none that are producing cancer cells at the moment?

Report post

17 replies. Join the discussion

IMHO, I would not cancel the ablation.

Report post

I have PTC with extrathyroidal extension to skeletal muscle, a parathyroid gland and 1 or 2 mediastinal lymph nodes. At the time when all this was diagnosed my resting and stimulated Tg were both undetectable. Having low or undetectable Tg does not mean there are not cancer cells in your body. It just means they are not differentiated enough to produce Tg.

Tg that is undetectable is a useful tool for future monitoring because if it does increase that raises a concern. More often, patients have an elevated Tg and it becomes important to see that number drop over time with treatment. Tg levels must be interpreted in the context of each individual patient's clinical picture.

Report post

went through with it. dr said he would if it was him. everything i read online said i should do it.

basically, it doesn't make any sense to have a 0 Tg because we know there are thyroid cells remaining since they cut around 2 parathyroids to try and save them.

Report post

sara - I had this discussion with my nuclear med nurse this week. Thyroid cancer cells are interesting in that it appears they can act like thyroid cells in some respects but not others. I had 2 hard-to-explain issues. One is that how are the thyroid cancer cells in my mediastinal nodes differentiated enough to take up iodine and light up on a WBS but yet not produce Tg? The second is my most excellent surgeon told me he left two "tufts" of thyroid tissue behind in order to preserve my nerves. I had normal thyroid function prior to my TT, yet these tufts of tissue did not light up on my WBS. Why not? No good explanation except these are cancer cells that behave somewhat like normal cells so they are not totally predictable.

Report post

i started the conversation with, "i've read all the papers. i've read all the recommendations. i see that they all say i should do it. but i am asking why it should be done. if the plan is to follow up every 6 months and it's a slow spreading cancer, what difference does it make on if we do this now or down the line? we are doing this around my school schedule and we originally talked about doing it over christmas break, so what difference does april make?"

he said that with my tsh 157 and my tg at 0 he actually tends to believe that there is an issue with the bloodwork since we know that there is tissue left behind. and that he would do it if it was him.

i'm interested to see the results from my wbs next week.

Report post

I would get a second opinion at a major cancer center (if possible) for RAI. What was your tumor size? Any vascular invasion?

Report post

If RAI is not clearly indicated right now, why would you want it? Get a neck US done to check for any growth or residual disease. If that is negative and with undetectable Tg, I believe you can keep RAI as an insurance if and when you need later. I would be circumspect in this decision.

Report post

One of the comments my surgeon made that had an impact on me was that if we just went with Tg and neck ultrasounds to monitor for recurrence and we did detect a recurrence down the road the first step in treatment would be a surgery to remove the cancer then follow up with RAI. I have a 2.5 inch scar from my TT and removal of 6 nearby lymph nodes. I was not interested in having a neck dissection if it was at all avoidable. But that is my personal outlook on it. Others may rather have a second surgery if it means the possibility of avoiding radiation.

Report post

i am being treated at a major cancer center, dana farber in boston.

and other than the bloodwork, rai is indicated. i fall into many of the other criteria for getting it done. we did do a smaller dose, and after already having a pretty difficult surgery where they had to not only do a neck dissection and cut my trapezius muscle to get to some of the lymphnodes that looked cancerous, i'm not interested in doing that again.

it's been 7 weeks since my surgery and i am no where near being able to return to work yet (a very physically demanding job in the medical field). if i don't need to do this again, i don't want to. the risk of leukemia, and risk to my loved ones from the radiation coming off me, is of concern, but i believe with the smaller dose we lessened it significantly. i was offered an even smaller dose, but i feel/felt that the dose i got was the midway point between not enough and too many possible issues down the road.

i'm only 32, and planning on getting pregnant when safe to do so, so i have to think of the long term issues that might occur 10-20 yrs down the road.

Report post

If the doctor tells to make the RAI, I would do...

There is no risk of leukemia because of RAI... earlier there was 1 % risk of other cancers, but nowadays 0 %...

Remember, Sara, you are patient - your knowledge is not enough to decide about RAI dose - just let the doctors do their job...

I had one RAI, a trace RAI 7 months after that & am now free of cancer -> my medication is reduced, my TSH may rise to 0.5 and if I were younger I could get pregnant 12 months after last RAI...

Hope you find trust on your doctors! Hugs ((()))

Report post

wow. liisa. while everyone needs to make their own decisions, you have not only given wrong information, but ignorant information. i hope no one reads your post and believes it.

the risk of leukemia, or other cancers, is not 0%, or even 1%. it's actually much higher, closer to 12%, versus a 0% without rai. also, there is admittedly much less data than researchers would like because no one wants to be in a study for the 10-20 years it takes to develop most other cancers as a result from the rai. also, there are not researchers that can commit the same 10-20 years to one project.

yes, i am a patient, but i am also in the medical field. i despise having patients that do not take their own health into their hands and depend on me for all the answers. i can't possibly know everything about every disease, but you only have to know about 1 or 2, and if you came to me with questions then i can do more research or we can discuss options.

there is a big difference between trusting someone to do what they feel is right and blind trust and not having a clue if they are leading you in the right direction.

thank you for sharing your experience, though.

Report post

closer to 18%...typo, sorry.

Report post

Dear Sara! Thanks for your information - this is the only time I have heard of the leukemia risk to be any risk for the patients taken RAI. I know that RAI dose was earlier (15 years back) much bigger as nowadays so people did get some side effects which do not exist any more because the RAI dose is less... I am not telling things out of my head but what I have heard from my doctor in the most respected cancer clinic in Finland... I have always got very correct treatment & information & so far no information which I would judge as "ignorant"...

It would be nice to get the source telling about leukemia risk.

I do not know for how long time RAI treatments has been there. One on my relative was treated with RAI in 1970's but I do not know if RAI was made long earlier... Does anybody know?

By the way - what is the RAI dose suggested to you?

Report post

18% - wow! For an average dose I assume? 100 is average I think? Geez. But what other choice is there for many of us???
My wish is that the researchers would come up with something more targeted and less dangerous to attach to Iodine. Decades from now, RAI will seem barbaric...

Report post

sara578, You wrote: << and it's a slow spreading cancer, what difference does it make on if we do this now or down the line? >> Here is the difference from my experience. My pathology report showed all tumors contained (barely), not much in the way of capsules and the lymph nodes taken were clear. First endo said, "You're cured. No RAI." He was WRONG. 5 months later I had 2 positive nodes show up on WBS and U/S, and I ended up having to have a higher dose of RAI (162mCi) than I would have if I had been informed and given the option to have the RAI sooner. I'm thankful that I got a second opinion with a wonderful endo, who knew from the start that something was wrong. My Tg was 1199, TgAB 2462. Duh. I am now 2-1/2 years post-RAI and have NED. I hope your scan results will give you some peace of mind as you move forward. The thyca diagnosis, surgery, ablation and post-treatment management are so protracted and not always clear or easy and therefore stressful and difficult. So much more research is needed in every area of thyroid cancer. At times, I think that thyca is just not taken seriously enough. The result of limited research is that for women, thyroid cancer is now the cancer with the fastest-growing number of new cases.

Report post

Cabro - did you make first trace RAI and prober RAI only after that? How much was the RAI dose in the first RAI? Why did not they made surgery for those 2 positive nodes?

Report post

In addition, I would add that "slow growing" thyroid cancer is not always true. Variants can be aggressive, and even classic PTC seems to spread quite often.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support ThyCa

Help ThyCa: Thyroid Cancer Survivors' Association reach its goals and support people like yourself by making a donation today.

Donate to  ThyCa: Thyroid Cancer Survivors' Association

Discussion topics

Help and information from ThyCa

Community leaders