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If you are Preparing for RAI don't have a CT scan
This may seem pretty obvious to you, but obviously wasn't to my oncologist who is the Director of Oncology for a major hospital! This is more of a vent than anything else, but maybe some of you can reassure me!!
Here's my background, at my 8 week PP check up on 4/28, my midwife found a nodule on my thyroid, she sent me for an ultrasound that confirmed a complex nodule on my right thyroid, and then suggest and FNA. The FNA came back the next week suspicious for papillary carcinoma. I met with a surgeon who said, take the thyroid out. I immediately obeyed and had a TT on 5/19. The path report came back on 5/22 with the dx-papillary carcinoma, follicular variant, right lobe 1.5cm, no vascular invasion, all margins clear...so pretty much it looked like stage 1 and we got it early. No nodes were taken because there were none around even remotely enlarged. Fast forward to June. My endo wanted me to have RAI (just in case there were trace amounts of thyroid tissue floating around) and I agreed, but started to do research about the prevalence of second malignancies in people who have had RAI, etc...Meanwhile, I came off of my ctyomel, stopped breastfeeding and started the LID diet (for 6 weeks!!) to prepare for RAI this week. I went to see my oncologist to make sure I was doing the right thing by having RAI. He said absolutely, no need to worry and you are going to pull through this JUST fine, but before you have RAI, let's do a CT scan to see if the cancer has spread. I didn't question him at all, thinking that being the director of oncology, someone who deals with thyroid cancer and has been practing for over 30 years, he must know what he was doing. I went in for my CT scan on July 3rd. The results came back on Monday...everything looked great, no evidence that the cancer had spread anywhere in my chest, blah, blah, blah. So I went in to nuclear medicine yesterday (the same exact place that did my CT scan on Thursday), to get my scan dose of iodine and the nuclear medicine tech said "We can't do anything for you, you had 100ccs of iodine on Thursday, it will take at least 8 weeks to deplete your iodine levels again before this treatment procedure will ever work." I was pissed, my endo, who had no idea my oncologist ordered the scan was pissed. When questioned, my oncologist said "I had no idea how much iodine they used for CT scans..." Are you kidding me? Do you just go around ordering CT scans because you think it might be a fun experience for someone?? After my hysterics tapered off, my endo said to go back on my Cytomel and come see her in early August with the thought that we would try again in early September. I just can't believe this!!! I guess I can be positive that nothing was found in my CT scan, but now I have to wait 8 more weeks for RAI. Does this seem crazy to you? Am I going to be okay? I mean they just found the cancer in May, so maybe this isn't too bad??
Here's my background, at my 8 week PP check up on 4/28, my midwife found a nodule on my thyroid, she sent me for an ultrasound that confirmed a complex nodule on my right thyroid, and then suggest and FNA. The FNA came back the next week suspicious for papillary carcinoma. I met with a surgeon who said, take the thyroid out. I immediately obeyed and had a TT on 5/19. The path report came back on 5/22 with the dx-papillary carcinoma, follicular variant, right lobe 1.5cm, no vascular invasion, all margins clear...so pretty much it looked like stage 1 and we got it early. No nodes were taken because there were none around even remotely enlarged. Fast forward to June. My endo wanted me to have RAI (just in case there were trace amounts of thyroid tissue floating around) and I agreed, but started to do research about the prevalence of second malignancies in people who have had RAI, etc...Meanwhile, I came off of my ctyomel, stopped breastfeeding and started the LID diet (for 6 weeks!!) to prepare for RAI this week. I went to see my oncologist to make sure I was doing the right thing by having RAI. He said absolutely, no need to worry and you are going to pull through this JUST fine, but before you have RAI, let's do a CT scan to see if the cancer has spread. I didn't question him at all, thinking that being the director of oncology, someone who deals with thyroid cancer and has been practing for over 30 years, he must know what he was doing. I went in for my CT scan on July 3rd. The results came back on Monday...everything looked great, no evidence that the cancer had spread anywhere in my chest, blah, blah, blah. So I went in to nuclear medicine yesterday (the same exact place that did my CT scan on Thursday), to get my scan dose of iodine and the nuclear medicine tech said "We can't do anything for you, you had 100ccs of iodine on Thursday, it will take at least 8 weeks to deplete your iodine levels again before this treatment procedure will ever work." I was pissed, my endo, who had no idea my oncologist ordered the scan was pissed. When questioned, my oncologist said "I had no idea how much iodine they used for CT scans..." Are you kidding me? Do you just go around ordering CT scans because you think it might be a fun experience for someone?? After my hysterics tapered off, my endo said to go back on my Cytomel and come see her in early August with the thought that we would try again in early September. I just can't believe this!!! I guess I can be positive that nothing was found in my CT scan, but now I have to wait 8 more weeks for RAI. Does this seem crazy to you? Am I going to be okay? I mean they just found the cancer in May, so maybe this isn't too bad??
I titally agree with the above - the contrast does not leave your system as quickly as some say.
Head of onocology Huh?
Total goof off in my opinion. Scary to think....
I think you should be fine - don't worry and try to elimate iodine naturally right now. You still need your meds b/c 8 weeks is too long to be off - but taking yourself off as much as possible naturally should help too I would think.
Head of onocology Huh?
Total goof off in my opinion. Scary to think....
I think you should be fine - don't worry and try to elimate iodine naturally right now. You still need your meds b/c 8 weeks is too long to be off - but taking yourself off as much as possible naturally should help too I would think.
Actually, be sure that 8 weeks after the CT is a long enough time. It's usually closer to 4 months. However, you can have a 24 hour urine iodine test to make sure the iodine from the CT has cleared. It's helpful to go on a low iodine diet for about a week before the test to help the iodine get out of your system.
I am going through the same thing. I had a CT scan w/contrast in late March and had to wait until Aug. 4th for my RAI. However, I knew the dangers of contrast and agreed in order for my surgeon to be able to visualize exactly where the tumor was. It ended up being an invaluable tool for him in the surgery.
I'm sorry you're having to go through this. I totally understand your frustration!!!
I am going through the same thing. I had a CT scan w/contrast in late March and had to wait until Aug. 4th for my RAI. However, I knew the dangers of contrast and agreed in order for my surgeon to be able to visualize exactly where the tumor was. It ended up being an invaluable tool for him in the surgery.
I'm sorry you're having to go through this. I totally understand your frustration!!!
I've had three CT scans with contrast dye.
The first one was performed when I was EXTREMELY hyper, and the Endo ordered it with no thought to discuss the fact that contrast dye contains iodine and would feed my hyper thyroid.
The other two messed up my hormone levels even though I was on thyroid meds. What a shock.
I appreciate doctors and what they can do for us, but too many times they don't understand the risks of certain procedures or medications any better than we do.
Which means I don't really trust them anymore.
The three write-ups on the right side of the page illustrate this point clearly. They are well worth reading. Dr. Choi and Dr. Kirksey point out flaws with current "standard procedures", and there are probably dozens of other common practices that are of dubious value.
As patients, we have to be educated consumers. That is very difficult. I don't have the time or desire to learn about every disease or medical procedure to find out if a medication or procedure is going to harm me rather than help.
It seems like we have to do so as best we can, though. Blindly following orders has gotten me in trouble more than once.
The first one was performed when I was EXTREMELY hyper, and the Endo ordered it with no thought to discuss the fact that contrast dye contains iodine and would feed my hyper thyroid.
The other two messed up my hormone levels even though I was on thyroid meds. What a shock.
I appreciate doctors and what they can do for us, but too many times they don't understand the risks of certain procedures or medications any better than we do.
Which means I don't really trust them anymore.
The three write-ups on the right side of the page illustrate this point clearly. They are well worth reading. Dr. Choi and Dr. Kirksey point out flaws with current "standard procedures", and there are probably dozens of other common practices that are of dubious value.
As patients, we have to be educated consumers. That is very difficult. I don't have the time or desire to learn about every disease or medical procedure to find out if a medication or procedure is going to harm me rather than help.
It seems like we have to do so as best we can, though. Blindly following orders has gotten me in trouble more than once.
LOL - that is way too funny! Thanks for thinking of me! LOL - I know I have had 3 idiot docs, or is it 4? I lost count! No really, I am on ENT #2, which is actually Doc #5, if that makes sense! The surgeon was great but I didn't need surgery. The GYN was just a bonus since I keep missing my period and I am not prego. I really don't know if my thyroid is causing that or other hormones.
I TRUELY understand your vent and share in your general disgust for stupid docs!!!! I really like the smart ones! LOL - I needed a good laugh today! I am so glad your spirits are up through all of this! Also, I guess as far as mess ups go, at least you know you have no problem areas right now and I KNOW that stupid oncologist learned a valuable lesson from you! I hope you chewed his butt good for that idiotic mistake! Keep the faith my dear, you really are doing great! ~Kim
Kim,
I actually thought about you the SECOND my nuclear medicine tech told me of the error my oncologist made---I was thinking, well, it looks like Kim isn't the ONLY one with retarded doctors out there! It makes me want to enroll in medical school, and FAST! Grr...good luck with your mammogram (no they don't use dye)...I am sure your tenderness is coming from the whacky hormones, they effect EVERYTHING, but nonetheless, it will give you some peace of mind I am sure. Thanks for reading my vent, I knew if anyone, you would understand!!
Theresa
I actually thought about you the SECOND my nuclear medicine tech told me of the error my oncologist made---I was thinking, well, it looks like Kim isn't the ONLY one with retarded doctors out there! It makes me want to enroll in medical school, and FAST! Grr...good luck with your mammogram (no they don't use dye)...I am sure your tenderness is coming from the whacky hormones, they effect EVERYTHING, but nonetheless, it will give you some peace of mind I am sure. Thanks for reading my vent, I knew if anyone, you would understand!!
Theresa
OMG the ignorance of DOCTORS!!!!! I feel for you hun - I just can't believe that! I pretty much pushed my doc (not the endo - mine was stupid for other reasons) for a CT with all the swelling I was having. It did not show much for me then I did some research and learned that you should not give a thyroid patient an IV Contrast CT! I was freaked, but then the results came back o.k. - still no discrete nodules - that was in June (I think - can't remember).
Now I have to have a mammogram - they don't use dye with that do they? The mammogram is to check (although doc did not feel anything) on my constant breast tenderness. I have whacked out hormones for 30. This was supposed to be a good year! Oh well.
I am soooo sorry your oncologist was such an idiot! I am glad your endo seem great. Hang in there hun! ~Kim
Now I have to have a mammogram - they don't use dye with that do they? The mammogram is to check (although doc did not feel anything) on my constant breast tenderness. I have whacked out hormones for 30. This was supposed to be a good year! Oh well.
I am soooo sorry your oncologist was such an idiot! I am glad your endo seem great. Hang in there hun! ~Kim
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