Thanks for this helpful site. I recently underwent a total thyroidectomy and lymph node dissection for what they found to be stage 1 papillary carcinoma. I have a 7 year history of Hashimotos, multinodule which was monitored yearly w/ us. Path report showed 3 carcinomas: right lobe had 1 which was 9x3x5mm. Left lobe had 2: 1mm and 4mm. All confined to thyroid. Neg lymph nodes. No evidence at time of surgery of spread. I now have been left with the decision whether or not to have RAI. My endo advises against and says to monitor. My surgeon advised I should have it. They both say it's a grey area. Some reports I read say Stage 1 patients shouldn't take it. Others say because it's multifocal I should be given RAI. I have so many questions about rates of recurrence w/ and w/out. Percentage incresed risks of other cancers (bladder, etc) w/ RAI. I would appreciate your opinion and direction to the latest documentation on the subject. many thanks!
Sorry - I haven't been on the forum much because of non-stop migraines. :-(
Because you have the papillary carcinoma in both lobes (and because it does spread with microcancers) I'd vote *yes*. My original cancer diagnosis was a small (5mm) area confined to my right lobe. I had the left lobe removed a year later (benign) because the rest of the family decided to get papillary carcinoma too. Anyway, my thyroglobulin (Tg) levels and TSH were monitored every 3 months and I went two years after the second surgery before both levels started to climb uncontrollably. I had the RAI and it was discovered that I had a cancer recurrence in the remaining thyroid tissue (they never get it all during surgery).
My youngest sister originally was told that she had cancer in both lobes and one lymph node. She had RAI but had two more recurrences after that - the last one showed metastases into her breasts and liver. She is now 100% cancer free but wishes she would have had a larger dose of RAI up front - before the cancer spread.
It is much easier to monitor you for recurrences *after* you have had RAI since it kills off your remaining thyroid tissue. Therefor, if there is a climb in your Tg levels they know it's a recurrence.
Anyway, just my opinion but I'd recommend having the RAI.
(I hope this makes sense, my head hurts so much I can't tell)
papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma
another sister with precancerous nodules
daughter with precancerous nodules
Thanks for your helpful post mid headache! i hope you're feeling better soon.
I'm glad to hear that your sis is cancer free and hope that you and your other family members are too!
About RAI doses, you mentioned that your sis wished she would have had a larger dose up front. I've read conflicting reports about how much is needed for ablation...can I ask what your experience has led you to feel is an appropriate level or range? (ie. is 30mc to small?)
So do I understand correctly that you had a lobectomy. Remaining lobe removed 1yr later. RAI treatment post 2nd surgery. Can I ask what kind of follow up is routine pre and post RAI? Pre RAI, was there any other testing done other than Tg and TSH every 3mo?
I had a TT in May of this year and was in a similar situation as you. After consulting with two endos, I decided not to have RAI. We will monitor my TG levels and I will have annual ultrasounds. My understanding is that if the cancer recurrs, I will have to have surgery whether I have had RAI or not. According to the "expert" endo from Mass General, there have been no dependable studies that show that RAI effectively reduces the recurrance of thyroid cancer. My understanding of the process is that RAI can be used to treat thyroid cancer that has spread to another part of the body (such as to lungs or lymph nodes) and cannot be surgically removed.
So, I am comfortable with my decision to not have RAI. I don't know your situation, but I have two young children, one who has CP, that I would have to stay away from for at least a week. The preparation before RAI from what I understand is very difficult (you must be hypo) and some side effects include problems with taste, problems with salivary glands, and problems with teeth. *For me* this was the correct decision. I wish you luck as you collect information to make your own informed decision!!
Sorry - had to work today so just getting back to the computer
You asked: About RAI doses, you mentioned that your sis wished she would have had a larger dose up front. I've read conflicting reports about how much is needed for ablation...can I ask what your experience has led you to feel is an appropriate level or range? (ie. is 30mc to small?)
- from all of the radiology and cancer articles from medical journals and medical text books there is no real standard for RAI doses but commonly the first dose is between 75mCi - 150mCi with 100mCi being the most common. 30mCi is very low for a treatment dose (but not unheard of). Here's a suggestion: I-123 is an alpha wave radiation and doesn't stay in the body long at all. Like I-131, it is made of iodine so it is absorbed into thyroid tissues but, unlike I-131, it is expelled from the body quickly. Ask about having an I-123 scan or a PET scan. Both of those radiations will be expelled from your body quickly then, if a treatment dose is warranted, you can go ahead and get the I-131.
You also asked: So do I understand correctly that you had a lobectomy. Remaining lobe removed 1yr later. RAI treatment post 2nd surgery. Can I ask what kind of follow up is routine pre and post RAI? Pre RAI, was there any other testing done other than Tg and TSH every 3mo?
Right - I had the right lobectomy (papillary carcinoma) in '03. There was no medical reason for me to have the left lobe removed - other than the family history - but I opted to have it out anyway in '04. Two years later my TSH and Tg started to climb, despite increased medication so I had 100mCi of I-131 in '06.
The tests - both pre and post RAI - are blood work (Tg and TSH are the biggest indicators of cancer recurrence), ultrasound and/or chest x-ray. RAI scans are also common yearly after a RAI treatment dose but I'm going to insist on I-123 next time instead of I-131 (for the scan). More and more medical experts are also suggesting PET scans.
My papillary cancer was multifocal. I had 6 spots, some were microcarcinomas, one larger one, but I can't remember the size. I'll have to pull out the report, and I can't now because everyone else in the house is sleeping! They pulled out some lymph nodes while they were in there, but none were positive. I can't remember how many they took.
The "expert endo" from Mass General told me that the chance of recurrence since my cancer was multifocal was 6%. I've had my TG measured (via blood draw) twice since my surgery and the number went down. I also had an ultrasound done.
I had two parathyroids taken out when my thyroid was removed. My calcium was way down and I ended up in the hospital for several extra days. I felt like I had been through enough with the stupid cancer, and with my luck, RAI wouldn't go too well either. I wasn't looking forward to leaving my children for any length of time, and I also wasn't sure where the heck I could go to ride out the time I needed to be secluded. After a lengthy talk with the endo from Mass Gen, he and I both were comfortable with my not receiving RAI. He had assumed when I walked in that I wanted RAI and I assured him that I was there to *talk* about it and wanted his honest opinion. He was quite surprised that I wasn't just going to take the RAI, as I guess most of his patients wanted it.
So, I'm 7 months post TT, my TG levels are going down or stablizing, I'll have an ultrasound to check the thyroid bed in probably late May, early June. We're still working on my synthroid dose, and I'm currently taking 137 during the week and 150 on the weekends. I'll have my bloodwork done just after Christmas and see if the slight increase has done anything to my levels. My guess is that it hasn't. It's a slow process getting that stuff right!!
Thanks so much for your VERY helpful info! I'm glad that you both are well and wish you continued great health. Sorry Tricia about your calcium. Mine was way low postop and it was a terrible feeling. I hope you're feeling better. I'm getting a 2nd opinion, but can't be seen for another month! :< I'll have to hang in Cytomel land until then. I spoke to my endo tonight and he said that most endo's would treat multifocal, but his opinion and the latest research is leaning away. He felt US and blood work would be a fine way to monitor. He said 30mci RAI would ablate remaining tissue in about 2/3 of the cases. He did also mention the 123 uptake to see what was there 1st. Utahmomma, Thanks for echoing and explaining that idea! Seems very reasonable. I still am not comfortable on either side of the coin.. thankfully my endo said I can take my time to decide...you've been so helpful. So now I can sleep at night rather than feeling I have to get my MD in endocrinology in one week. Best to you all.
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