radioactive iodine - to have it or not?

[Susan108]

I have multifocal thyroid cancer (follicular variant of papillary carcinoma).  The maximum tumor size was 1.2 cm on the right lobe, and the largest tumor on the left lobe was also 1.2 cm.  The tumors were throughout the entire thyroid though and the isthmus - the other ones were just smaller than 1.2 cm.  I had a total thyroidectomy two months ago, and am waiting to see the oncologist.  I am in my early 40's and female - so those are two points in my favor.  Apparently some oncologists do not do radioactive iodine if the tumors are < 4 cm - others have different cutoffs of < 1 cm or < 1.5 cm.  If the oncologist thinks my tumors are too small to do the radioactive iodine, how else can I be followed up?  Thyroglobulin testing wouldn't work, right?  I'm really worried about the cancer recurring.  Would they just do ultrasounds to follow me?  Maybe I should push for the radioactive iodine treatment.  I'm not sure.

Many thanks for any advice.

[Noelle1948]

Sorry I didn't realize it posted three times.

[Noelle1948]

I had a Right THyroidectomy after having had the left side removed in 2001 in 2012. I never had the RAI. The endo said they would follow me yearly with an ultrasound. I have had problems with allergies to iodine but was told that they give such a small amount that it probably would be ok. My TSH is .06 and he wants to keep it down under 0.1. I am exhausted all the time. Pre surgery my TSH was 5.6 and I wasn't this tired. This is the 4th cancer I have had..squamous cell insitu, uterine, breast actually brca ca insitu) and now thyroid. the tumor they found was small 0.8cm, unifocal.What are your thoughts on RAI or not? I have issues with multiple allergies and infections...allergies with most antibiotics and kidney disease.

[Noelle1948]

I had a Right THyroidectomy after having had the left side removed in 2001 in 2012. I never had the RAI. The endo said they would follow me yearly with an ultrasound. I have had problems with allergies to iodine but was told that they give such a small amount that it probably would be ok. My TSH is .06 and he wants to keep it down under 0.1. I am exhausted all the time. Pre surgery my TSH was 5.6 and I wasn't this tired. This is the 4th cancer I have had..squamous cell insitu, uterine, breast actually brca ca insitu) and now thyroid. the tumor they found was small 0.8cm, unifocal.What are your thoughts on RAI or not? I have issues with multiple allergies and infections...allergies with most antibiotics and kidney disease.

[Noelle1948]

I had a Right THyroidectomy after having had the left side removed in 2001 in 2012. I never had the RAI. The endo said they would follow me yearly with an ultrasound. I have had problems with allergies to iodine but was told that they give such a small amount that it probably would be ok. My TSH is .06 and he wants to keep it down under 0.1. I am exhausted all the time. Pre surgery my TSH was 5.6 and I wasn't this tired. This is the 4th cancer I have had..squamous cell insitu, uterine, breast actually brca ca insitu) and now thyroid. the tumor they found was small 0.8cm, unifocal.What are your thoughts on RAI or not? I have issues with multiple allergies and infections...allergies with most antibiotics and kidney disease.

[malawi]

For what its worth i had a TT for THYCA in Dec of 06 and i feel great.Im on 187mcg synthroid and my TSH is 0.22.Ive actually lost 20lbs but i seriously revamped my diets and workouts.Knowing what i know now about alternative medicine i would seriously reconsider my TT.At least for a few months to try something else.My surgeon told me there was no rush.Ive met several people since who have reversed serious stage 4 cancer with natural methods...Check out brantleycure.com and click on video on left margin and see how one man reversed his thyroid cancer with a simple diet in 9 weeks.Ultimately we all have to decide whats best for each of us..
To your good health
Roamn

[KerrieRenne]

Hello,

My name is Kerrie, I'm 39 years old...

I recent had a bx of the right thyroid lobe.  The pathology results are Immunohistochemistry stains for thyroid carcinoma marker HBME-1 in the are of suspicion, negitive in the normal apperaing thyroid.  My ENDO wants me to have both sides of my thyroid removed.  She satates that I have been HYPO since 2001, and I havent been feeling good, and that my thyroid isn't working correctly that I should have it removed.  The size of the lump is very small, 0.1.  She said it would be up to me to have RAI.  When I first heard the news I was scared.  Noone likes to hear the word cancer.  But after the inital shock wore off, and my ENDO telling me that all will be fine I decided to have a TT and the RAI.  I thought that was the only thing I could do, and the best plan.  But I'm healring from a few holistic doctors that there maybe a better way to go.  Not take the entire thyroid out!  And take a type of Chineese meds instead.  They say that I'll never feel good again.  That scares me.  So, my questions to everyone, how do you feel now that you have had a TT and RAI?  Back to normal yourself?  What about the weight gain?  I'm in the Air Force and can not gain weight.  What about the other HYPO symptoms?  Better or worse?  Is there an alternative to a TT, that is just as good.  I pray that God will lead me in the right direction, give me a peace.  I know that He will heal me, I just want to do my part...  but I don't know what that is.  

[KJ5854]

I had a TT one month ago (Feb 5th).   I had a less than 5mm unifocal papillary thyroid carcinoma with follicular variant in the right lobe.  No lymph node invasion, no blood vessel invasion.  Tumor limited to thyroid.  I'm 39 and female.  

My endocronologist, who specializes in thyroids and is also a thyroid cancer survivor herself, recommended to me NOT to do the RAI.  She said standard protocol is not to do RAI unless tumor is 1.5cm or larger.  She told me the benefits from RAI did not outweigh the risks for me.  After much research and thought, I decided against RAI.  However, your tumors are 1.2 cm and multi-focal. I would be more inclined to do the RAI if I were n your shoes.  My endo said she'd do the RAI for me if I insisted on it.

For tracking purposes, she's have my TSH, Thyroglobuin, Free T4 and Calcium checked every 4 weeks until my TSH is under .4.  After that, I'll have bloodwork every 3 months for a while and then every 6 for the rest of my life.  

I know it's a tough decision to make.  Keep us posted.

[shellsa]

hi michelle here i too was diagnosed with follucar variant papillary carcinoma ive had complete thyroidectomy and now waiting rai too mine is 16mm quite a large tumour i used to have still waiting on patholigy

[ChitChatNine]

My incidental findings were only mm's ea.... multi focul papillary ....no lymph node involvement and they offered to take out the other side and followup with RAI .. so, size didn't make a difference.  I had options, though, bcz of the size .. but, being multi-focul in itself made RAI an option w/o pushing for it  ..... I would *shop* around for 2nd and 3rd opinion w/o a doubt ..... my largest tumor was 5mm ... I still have 3mm on other side but they are almost certain it is adenoma like the orig two removed last year which were almost 2cm ea. but totally benign.

You have to do what makes you feel best when you put YOUR head on the pillow.  I read the stats, recommendations, protocols but in the end it was MY decision and that is what matters the most .. if you are wondering, yes ..... I am onlly 80% comfortable with not having TT and RAI .... but in my case risks of the ca are better than risks from another surgery as I don't heal well and they tell me scar tissue inside can do permanent harm esp. with my history of abscesses and wound closure from prior surgery.

Cheryl (1/07 .. partial .. TSH 1.5 ... 88 mcgs synthroid .. other side never worked again)

[marsha1975]

My tumor was only unifocal and my oncologist is wanting me to get a whole body scan done with rai.  He said this will tell us whether the thyroid cancer has metastasized to anywhere else because it will show up as a thyroid cancer due to the type of scan it is.  He also said it is impossible to get rid of all the thyroid tissue, even though I had a TT and this tissue could turn cancerous at any time.  He will come over to the hospital the day I get my scan and tell me the results and says if the uptake is abnormal then he wants me to do the RAI.  I'm just going to get the scan for now though, I am not going to do the RAI.  He said if the scan was normal he would just repeat the test in 6 months, so I am just going to wait the 6 months against his judgement, repeat the scan and see if anything had changed from the 1st scan.  Yours sounds like it's worse than mine was though so you might want to find a different oncologist.

[imedicmommy]

I also had a multifocal papillary cancer with metasis to 7 out of 9 lymph nodes (one golf ball size) and to the chest. I had RAI last October and am gearing up for my second round this spring. Despite the surgeons best efforts there was LOTS of microscopic tissue left and on scans, my neck lit up like a Christmas tree therefore the second treatment. I too see an oncologist and truthfully I feel very well taken care of. He and his staff have never minimized my cancer as compared to their other patients. I see him, in fact, on the recommendation of my endocrinologist. My understanding of thyroglobulin is that it works best once you have gotten rid of as much tissue as possible or after you have the ablation. Because my ablation is not complete, they have not measured it yet. I was 29 and female when diagnosed so I was still considered low risk. That being said, not getting RAI was never not an option for me. You sound like you are very uncomfortable with the idea that they might not have gotten all of the cancer out surgically so if I were you I would read as much as possible about the risks and benefits and have a long talk with your oncologist about your treatment plan. You could also get a second opinion if you are not sure. A radiation oncologist is a specialist in this area and can and should be able to tell you more than you ever wanted to know about RAI. Mine told me that the reason that this is such a low risk cancer with such a high cure rate is because of the use of RAI and I have read that they have been using this treatment since the 1960's so the long term effects are well known and are documented.

I wish you luck in your decision making, it's definitly not an easy one...keep us posted.
Margie

[Justin1967]

I also  had a multi-focal cancer and my endo told me that I was stuck in a grey area as to whether RAI was really necessary.. I  reluctuctly did it in the end, 7 months after my TT surgery.. I'm not sure if it was really necessary but I can sleep well at night in the knowledge that I did everything possible to get rid of my cancer..

But on the other hand who wants spent radioactive material going through their body and .. it is really a magic poison..

I did RAI 3 weeks ago without Thyrogen and am still hypo. I just hope that all is good for now on..

[utahmomma]

With multi focal cancers RAI is the typical protocol.
With follicular variant of papillary carcinoma, RAI is the typical protocol.
With tumors over 1cm RAI is the typical protocol.

Get to an endocrinologist who specializes in thyroids.  Oncologists, bless their hearts, deal with a lot of different cancers and many don't feel that thyroid cancer is that big of a deal compared to, say, liver cancer.  Endo's (thyroid specialist endos) deal with a lot more thyroid cancer than the average oncologist.

Ultrasounds won't show a recurrence until it gets quite large (and thyroid cancers can often metastasize to other areas).  You *do* need your thyroglobulin followed every 6 months or so but you need another opinion on RAI.

Keep us posted!

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and maybe '08??