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IS RAI necessary?

dghp71
Posts: 7
Joined: May 2009

Hi. This is all new to me. I am 38 and was diagnosed with papillary and medullary form of thyroid cancer. The cysts were found by accident during a MRI for neck pain. After 2 FNA's and a second opinion, I finally had a right lobectomy. It came back as cancerous (papillary)with two areas, one being small the other a little larger. About 6 weeks later I had a total thyroidectomy. Two types of cancers were found in the left side. I was told that my papillary was small so I may not need RAI. I have never had a body scan or any other tests. My last surgery was 4/7/09. Does anyone have information that can help me decide if I should consider have the treatment? I am told that I have one of the most famous endocrinologists in the country, but I just want to double check. I am very lucky that this was caught so early, so I just want to do the right thing. Thanks in advance for your help!

usljh10
Posts: 85
Joined: Apr 2009

I think so. The RAI will take care of any thyroid cancers cell that were left. My 1st dose of RAI was 153mci. whick is considered sorta HI. When I received my low dose 1 year later for the whole body scan it was 5mci. The LID is the worsth thing about the whole process. Once the cancer is gone you will still need follow up checks to make sure it dosent return.
Good luck!

dghp71
Posts: 7
Joined: May 2009

I was told that I could wait up to 4-5 years for the RAI. Neither the surgeon or endocrinologist seemed too concerned. The three papillary CA spots totaled about 1.7 cm. I think I have to do more research. Did you have a full body scan before the RAI? I am not sure what to ask for. My doctor told me I would only need to be on a LID for a few days and I would not have to come off my hormones if I was to have the RAI. I heard that was awful for some people. They felt like they had the flu and looked gray.
Did you have any issues with your heart rate once placed on replacement hormones? I have been experiencing extreme rapid heart rates with resting rates around 100-110. My usual was around 70-75. My first appointment to measure my TSH is not for another month. I guess my level maybe too high for me.

usljh10
Posts: 85
Joined: Apr 2009

I did'nt have a wbs till 1 year later. My cancer was found on March 2008. I was'nt having any symtoms. My hands were hurting,thats why I made a doc.appt. I went to my GP and he did a neck check and found the nodules. Did a ultrasound and he sent me to a surgent.Took the left lobe 1st. Came back papillary cancer. Since the right lobe had a nodule too, we dicided to do another surgery 2 weeks later. I had my synthroid changed 6 times since. I did'nt wait till my doctors appt. If I felt strange. I would call him and he would have me go in for blood test and they would call me the next day and change my meds. Plus I was going through memopause at the same time so it was hard to tell if i was having a hot flash from Menopause or the synthroid hormones were too high... I started out on 135 now I'm at 112.Iv's gained a little weight and he raised it this last time form 100 to 112. I feel good now. Last month I did the LID (8 DAYS) again, took the thyrogens shots and low dose of RAI (5MCI) the scan came back clear and blood work was good. I'm bless.... Oh my hand don't hurt anymore :)

JAWsSavannah
Posts: 57
Joined: Jun 2009

I don't think you would be risking very much by waiting a few years. Your doctor can and should monitor your thyroglobulin level during that period, though. If you start getting increased Tg levels then you should probably get the RAI. I had RAI in March of 2006 and clear scans for over a year after that, but my Tg level started climbing within a few months of RAI. When it reached 100 plus my endo decided it was time for another RAI ablation even though the nuclear scans were still clear. As it turned out my Ca was unresponsive to the second ablation so I ended up in the clinical trial for pazopanib.

kmt624
Posts: 10
Joined: Jul 2009

Hello -

I recommend RAI treatment. I am preparing for it right now. After your total thyroidectomy there can be microscopic cancer cells that can't be seen. RAI gets those microscopic cells and any cells that have traveled anywhere else. It also decreases the risk or recurrence. I am really tired and a little spacey, but I know it will benefit me in the long run. I know it's hard, but in the whole scheme of life, its only a short time. Good luck and hang in there!!

jcvolt
Posts: 69
Joined: Mar 2009

RAI (I-131) causes thyroid cancer in persons with normal thyroids, why would they think it can also cure it. Many doctors are now skipping RAI for patients with stage 1&2 cancer when there is no evidence it has spread beyond the neck. My surgeon wanted me to have RAI to remove left over thyroid tissue even though they got all the cancer.
Fortunately I started reading about RAI and people going through second and third treatments usually in 2-5 years after the first. It took that cancer 20 years or more to develop and they removed it. Why risk hearing and vision loss, damage to taste buds and salivary glands, leukemia etc. and put yourself through that isolation when it may do more harm than good.

usljh10
Posts: 85
Joined: Apr 2009

I did the RAI (5mci) treatment again because a low dose would show on a WBS if the cancer had spread anywhere it would light up. I had never had a whole body scan before and I wanted to know that I did'nt have anymore Thyroid cancer anywhere else.Some people have a WBS w/low dose of RAI before their 1st treatment, I did'nt and I Always wondered why. I feel better knowing.

jcvolt
Posts: 69
Joined: Mar 2009

Often the WBS determines if there if a need for RAI treatment and what the dose should be. There is a trend now of not using RAI treatment if there is no evidence that the cancer has spread.

usljh10
Posts: 85
Joined: Apr 2009

I was not given the choice of a WBS 1st. Had I known I would have requested a scan 1ST. I was told the size of my nodules plus having them in both sides of my Thyroid decided the
Treatment. Plus the ablation would take care of any tissue/cancer left.

jcvolt
Posts: 69
Joined: Mar 2009

If your cancer was past stage 2 that seems to be the protocol.
But remember, You always have a choice and some people seem to forget that your doctors can't force you to do anything. If you did research and decided the treatment was not what wanted most doctors would honor your wishes, if not you need to find another doctor.

kmt624
Posts: 10
Joined: Jul 2009

I would get a second opinion. I have spoked with several people who have received it and there is little to no evidence that it can harm you if you already have cancer. Remember, the thyroid is in a very delicate area with veins and arteries and parathyroid gland. That being said they can not completely remove your cancer with surgery along. RAI is the best way to avoid recurrence. Also, any doctor will tell you not to read the internet. Those stats could be outliers and you need to look into the majority of research not just one study. Part of my job is research so you have to look at the majority of research, not just what one researcher reported. If you feel that way, I would see how many studies actually proved that and who, when etc.

gigglestars
Posts: 1
Joined: Jul 2009

As some have suggested, you do have a say in the matter about whether to do it or not. It is recommended to do it if you have a nodule over 1cm, and/or if you have one that has grown past the capsule. I do not agree that RAI causes thryoid cancer in those with healthy thyroids--I would be interested in checking out the resources that was derived from. The 5 mci dose for the Whole Body Scan is not a treatment dose, but a scan dose. It is a very low level (I think I131) an donly used for the scan. If a treatment dose is required, i think that is the I123 (I could have the two reversed). I agree that at least doing a WBS will show if any cancer has spread. You would expect to see your thyroid bed light up, so it is most useful for seing if any other part of your body, like you lungs, shows an uptake. Based on what the nuclear med dr sees, a treatment dose would be administered. Another thing to consider is it is near impossible to remove ALL thyroid tissue because to do so would risk nerve damage as well as parathyroid damage. Surgeons often have to leave a bit of tissue intact so as not to damage these structures, and the RAI helps abalate these remaining tissues and allow you to have the most accurate follow up testing in later years. This is very important and with any remaining thyroid tissue in yoru neck these sorts of tests are not possible for long term care and management. Whatever route you decide, you should have regular bloodwork and neck ultrasounds every 6 months to check for suspicious growth, and this is for the rest of your life.
A wonderful online resource is http://health.groups.yahoo.com/group/Thyca/.
Good luck!

dghp71
Posts: 7
Joined: May 2009

I have not checked the site in a while, so thank you for responding. I have had a few different opinions from different M.D.'s. The research info I received was that 1.5cm or above which now also includes adding all of the different sites. I had two sites on my right and one on my left that totalled 1.5cm. It was caught extremely early due to my MRI for an unrelated issue that found the nodules on my thyroid. I do believe that I will do it eventually. I have been married for 4 years and I am 38 years old. We do not have children yet, and this seems like a priority to us and my endocrine M.D.! I don't want to wait 6 months to a year or increase any risks-although many state that their is no risk. At my age I already have an increased risk for issues-I don't want to add any others. I have mentioned a WBS to my M.D.'S. They don't recommend this. My surgeon is at a top hospital in Boston and performs about 10-15 surgeries a week. My endo has is one of the leading researchers-I need to trust them to a point, but still be aware of my choices. I have blood work done every 4-6 months currently. I also had some medullary microcarcinoma on the left side. This type scares me more than papillary. They have been testing for the marker of that type as well. Thanks for the resource site.

JAWsSavannah
Posts: 57
Joined: Jun 2009

Your rapid pulse is not unusual but it probably means your initial dose of hormones is a little too high--you're slightly hyper. You should let your endo know about this and ask him if he will allow a small reduction.

dghp71
Posts: 7
Joined: May 2009

I called my M.D. I was not due for my TSH level check for another 4-5 weeks since it had only been a few weeks since the second surgery to remove my thyroid. He had me go from 125mcg to around 100mcg. I took one 125mcg pill one day and cut another in half for the next day. After about three weeks my heart rate improved-no more issues. Blood worked showed adequate levels in June. I am now on 100mcg's daily. It was a little scary at first-not knowing that could be a symptom. I did not mind the weight loss though. Thanks for responding.

JAWsSavannah
Posts: 57
Joined: Jun 2009

You're off to a good start on at least two levels: You recognized a problem (rapid pulse) and your doctor trusted you enough to reduce the dose prior to bloodwork. Now that the bloodwork confirms the reduction was right you will be in a good position to tweak your dose in the future should you find yourself going hypo or hyper. Just keep your doctor in the loop--in advance if possible. Going hypo isn't very dangerous but you don't want to wait two months for bloodwork when your body is telling you that you are hyper. Serious heart damage can result.

I made my own adjustments for about a year when I didn't have an endo and each time the bloodwork done by my GP confirmed my dose was correct. My GP was a little perturbed at first but after three or four self adjustments (each confirmed by blood tests) he was OK with it. The Mayo people don't want me doing that anymore, though. :)

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