Questions On Rai And Scan....

First post on this board.  I have Papillary Carcinoma..which was the original report after they removed my Thyroid on May 9th, 2008.  On my pre-surgery biopsy - the pathologist indicated it "may be" tall cell variant...  I insisted on a 2nd opinion of the thyroid tissue after removal...and they sent it to the University of Pennsylvania lab - where they concluded it was definitely tall cell variant...but the tumor was only .9 centimeters...(less than 1)....and it appears to have been confined to the thyroid.  I also had three lymph nodes biopsied prior to surgery - and they came back negative.  No lymph nodes were removed during surgery.  For the record...the pathologist at the Hospital who said it "was not" tall cell...was extremely confident he was right.  He told my oncologist the biopsy mention was fairly useless and he was confident.  The lab at the University of Pennsylvania...looked at the same tissue..and said it was clearly tall cell.  I am thinking...there may be more tall cell than we know...but many pathologist miss it.  The lab at Pennsylvania also indicated they had not really seen a tall cell tumor this small before..so they said no data was available to make any type of prognosis.  FWIW - this was found on a full body MRI I have done annually...my thyroid blood levels were fine and it appeared to be functioning normally...but it is now removed.  I am a 44 year old male.

I was on one cytomel a day for approx. 2 weeks after surgery...but stopped 3 weeks ago and after my blood test this week - was given clearance to do RAI.  I am not exactly clear from speaking to my doctor...and figured I would ask all the folks on this board...many who have been thru this!

1) How long after taking the RAI did you go in for a followup scan?  My oncologist initially said 3 days....but the endo said 7 - 10 days...figured the 7 - 10 days was right. 

2) can you start armoroid or synthroid immediately after the scan - assuming they find no more signs of cancer elsewhere? 

3)  How long does it take for the replacement thyroid medication to "kick in"? 

 Any input appreciated....

 

I forgot to mention....thanks to everyone for posting so much information here!  Brain is getting a little fuzzy!  I am not sure what it means...and I am a little too tired now to look it up...just had the lab tests sent to me from blood draw on Monday of this week my t4 was <.5 , TSH was 74.38 and T3 was <20.  Since it is Thursday...assume they are now worse!  Assume it all means...I have no thyroid and have not had any medication for awhile!   All the endo office told me was: we are sending your records to nuclear medicine dept....they will call you within 24 hours to set up your appt....  But...I will be calling them by the end of the day. 

 

On 6/12/2008 pinnacle1263 wrote:

First post on this board.  I have Papillary Carcinoma..which was the original report after they removed my Thyroid on May 9th, 2008.  On my pre-surgery biopsy - the pathologist indicated it "may be" tall cell variant...  I insisted on a 2nd opinion of the thyroid tissue after removal...and they sent it to the University of Pennsylvania lab - where they concluded it was definitely tall cell variant...but the tumor was only .9 centimeters...(less than 1)....and it appears to have been confined to the thyroid.  I also had three lymph nodes biopsied prior to surgery - and they came back negative.  No lymph nodes were removed during surgery.  For the record...the pathologist at the Hospital who said it "was not" tall cell...was extremely confident he was right.  He told my oncologist the biopsy mention was fairly useless and he was confident.  The lab at the University of Pennsylvania...looked at the same tissue..and said it was clearly tall cell.  I am thinking...there may be more tall cell than we know...but many pathologist miss it.  The lab at Pennsylvania also indicated they had not really seen a tall cell tumor this small before..so they said no data was available to make any type of prognosis.  FWIW - this was found on a full body MRI I have done annually...my thyroid blood levels were fine and it appeared to be functioning normally...but it is now removed.  I am a 44 year old male.

I was on one cytomel a day for approx. 2 weeks after surgery...but stopped 3 weeks ago and after my blood test this week - was given clearance to do RAI.  I am not exactly clear from speaking to my doctor...and figured I would ask all the folks on this board...many who have been thru this!

1) How long after taking the RAI did you go in for a followup scan?  My oncologist initially said 3 days....but the endo said 7 - 10 days...figured the 7 - 10 days was right. 

2) can you start armoroid or synthroid immediately after the scan - assuming they find no more signs of cancer elsewhere? 

3)  How long does it take for the replacement thyroid medication to "kick in"? 

 Any input appreciated....

 

Hi!  I did the ThyCa thing summer of 2007.  Had blood drawn on a monday, tracer dose on tuesday, and scan on wednesday to determine the amount of RAI required, based on what "lit" up.  (In my case, nothing more than some left over thyroid cells in the thyroid bed glowed....no sign of any spread to the lymph nodes...although my diagnosis was hurthle cell, so did the max RAI amount because of that.)  Waited around a couple hours for the nuclear people to "cook up" the RAI pill, swallowed that and went home!  Saw the doc a couple of days later who told me I would have an ultrasound at about 6 months and then RAI again at 1year to see what was left that the RAI dose didn't kill.  (I just finished that process in April using Thyrogen rather than going hypo....got the "all clear" thankfully and now am free to frolic until next years followup.)

Hypo hell was the worst of this whole process as far as I'm concerned.... and it took me a couple of weeks to feel human again after starting my meds about 72 hours after RAI.  It then took at least 3-4 months to feel normal again.

Good Luck----it will be behind you before you know it!    SUE

Thank you so much Sue...  Sounds a little different from what I was thinking....but it is great you went on your meds after 72 hours...I was thinking I was 2 or 3 weeks away from meds.  Obviously...everyone is different..so your info helps me ask questions of nuclear medicine....who I will be calling in a few hours to see if they "have my file" yet.

I am doing the RAI due to the tall cell variant..and I am a 44 year old male...  If it was not tall cell (which it was originally diagnosed locally) and if I were younger....they would probably not do the RAI now due to the small size of the tumor. 

 

Hey Pinnacle,

 I have papillary cancer, too.  I do not have tall cell, but my thyroid was riddles with small tumors, the largest of which was 30mm.  I am on day 5 of my low iodine diet and am expecting to have my 2nd dose of RAI two weeks from today.  Last time, my endo gave me a prescription for synthroid ahead of time and told me to start taking it the day after RAI.  Since it was the first time I was put on Synthroid, it was a sort of experimental dose of 137mcg.  I did start feeling better within a week, but after two weeks I was fading again.  Every six weeks I had bloodwork to determine whether I was on the right dose, because I continued to feel hypo, and my endo would increase it.  Finally, 3 months later, I was increased to 224mcg, and I have since felt pretty good with that.  I am hoping that this time around I will start feeling better in a few days and stay that way for 6 months until I have to do it all over again!  7 days after RAI was my scan to see how much was there (and to make sure it was nowhere else since it had spread to a lymph).  

 

Good Luck,

Celt 

Had to write.  I was diagnosed with tall cell variant last year, it was quite aggressive as it was in the left lobe, isthmus, lymphatic system of the lobe and broke through the central neck capsule and turned out to be in 3 of 28 lymph nodes in my neck, stage 3.  I also go to the Hospital of the University of Penn.  Tall cell variant is clearly recognized because the cells are as it is named, taller than the normal papillary cell.  What doctor do you see??  I'm actually preparing for my one year scan to see if I need a second treatment of RAI.  The first round did not address the positive lymph node that was not taken out with the primary TT so I had a neck dissection.  Tall cell may or may not take up the iodine to be ablated so it makes it a little tricky to monitor for recurrence.  This time around I will be having the thyrogen injections to go hypo rather than being off meds but I will still have to do the LID for ten days.  Good luck with the process!

Leemg,

I am actually in Arizona....my Doctor had the sample tissue sent to Univ of Penn Lab for a 2nd opinion....the original lab report was done locally here in Arizona.   What size were your tumors..if you do not mind me asking....mine was considered very small at under 1 cm. 

 What was also odd about my nodule...was that it was "soft"...not hard.  So far...no one has ever been able to explain what this means.  My Surgeon...who has probably taken out 150 Thyroids..had never seen it before... 

 I will find out Monday my RAI dose....I thought tall cell was hard to eliminate with RAI procedure....I had not focused on the fact it may also be hard to detect also....will have to check into this aspect.

 

If I remember correctly the largest was either 1.3 cm or 1.5 cm.  Yes, tall cell can be resistant to RAI but my endo said they try a second dose if necessary before discounting it.  I had about 125 millicuries.  Some doctors that I had sought another opinion said between 150 and 200 would be their recommendation but the Univ. of Penn. is more conservative.  I guess from their experience, more isn't always necessarily necessary or better but this can be disputed.  I sometimes wonder if I had had the higher dose if indeed it would have addressed the tall cell portion of the thyroid cancer.