re-occurance after 15 yrs

anyone

I had Pap. thyroid CA w/ (L) side nodule and 1 (R) side (+) lymoh node in 1996.  Did I 131 and had surgery to remove thyroid and that node.  Now after 15 yrs.  i have 3 lymph nodes en-larged.  ? 123 scan planned.  Re-occurence was NOT supposed to happen, they were ready to say no more  scans???  found it on routine follow-up.  MD not really saying what treatment option,  is except it is not I 131????  I'm scared, the most curable CA, not mose recurrant??  anyone else out there like me?

Karen

Me Karen!  But I'm trying not to be too scared.  This message board helps so much because I think my friends would be terrified if they knew. 

Hang in there.  Do your research.  Ask questions to any doctor who will give you time..Do the scans, the tests, know what your original treatments were, i.e. did you do RAI after the 1st surgery? 

I did not have RAI first time around and.. tadaaaa - recurrence.   My doctor tells me I'm going to be okay and not to worry. 

Lets cross these bridges as we come to them.  The worst part is the waiting isn't it? Waiting for results, waiting for the scan.  It's all so nerve wracking sometimes.

Right now I'm on cytomel, gearing up for the I 131 scan and then my first RAI.  Also reading up on low iodine diet on thyca.org     June 1st I come off the cytomel in prep for the scan. Not feeling my greatest physically to be honest. I think it's the cytomel dosing. 

So... what are you up to as far as your treatment?

In healing positivity, Flan

IF, and that is a big fat IF it is cancer again...remember it can still be curable! Recurrant maybe, but curable...If it were me, I would get the results of the scan and then get a second opinion. I thought that others here had I 131 for a recurrance too??

Hang in there...

Flan

I did have total thyroidectomy in 96, and RAI following it.  They still say if you had surgery alone it was as good as w/RAI.  My sister had it too.  But I had 1 + lymph node in 96.  I have alot of Para-thyroid symptoms now....we'll see if it's related??  Otherwise they still tell me it's curable.  But the www.  what ever  ...... looks depressing, because others have had 1-4 surgeries.....which looks like after RAI they never do RAI twice...so after that it's surgery, after surgery.....  in addition for you cyctomel is old treatment.  it's short acting so when they stop it's like no thyroid like and so it's why you'll feel bad....some say they'd rather die than go off synthroid......yeh it's an overwheling feeling of Blah, nausea, dry heaves, hot/cold intolerance, severe tiredness....but it's not for long....if your doctors can get thyrogen injection for next scan.....it's so quick it removes thyroid in days and so diet is only 2 weeks......hey the diet was really bad in 96.  I saw a cookbook on the web....it's a +.  in 96 I lost 25 lbs in 4 weeks.  Keep the faith.  if you need a expert a Dr. James Fagin in NY. is well known, he left cincinnati to study this disease because up till now everything they knew for 50 yrs is false,.  Especially that it re-occurs, and it runs is siblings.  Keep an eye on any wierd symptoms in future, compare  them to stuff you find on internet--it's pretty accurate.  and make your doctors do 2/per year labs to monitor your synthroid levels because if they are too low for long you could be letting the cancer grow back and not even know it.  Obviously i have too much knowledge.  I am an RN, just not in speciality of Endocrinology....

Karen.

Hi Karen.  Yep, I'm on the cytomel to prepare for the I-131 and RAI.  I'm actually looking forward to the diet.  I enjoy cooking so I am thinking of using this to create new habits and put more thought into what I'm eating.

I'm getting all the treatments at Cedars-Sinai.  Sighhhh.  I hear good things about it. 

Thanks you Karen.  We're gonna be all right.  I know it!

Karen, so are you saying you would not have initially done the RAI the same year as the surgery? (I'm on the borderline and am gathering info to try to decide whether to have the remnant ablation or not.)

My daughter just found out that her cancer has returned after 20 years. She had 2 surgeries, at 17 then at 21 removing her thyroid and lymph nodes.  She had body scans at first after RAI treatment and nothing ever showed up so we thought we were home free!  Now at 41 she has cancer in a lymph node in her neck and is preparing for the thyroglobulin test.  We won't know until July if it has spread anywhere else in her body.  She has 4 beautiful children who need their mama so we are hoping all is well or at least treatable.  My best wishes to all dealing with this.