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Post Papillary Carcinoma of the Thyroid - scared now -recurrent?

Grammitofour
Posts: 3
Joined: Apr 2013

Hi everyone, new here, trying to post this properly.
In 2002, I was diagnosed with Papillary Carcinoma after years of undiagnosed symptoms but I did have Hashimoto's .  I was taken seriously when the biopsy needle refused to enter the nodule.  I had a Total Thyroidectomy with a Neck Disection and removal of about 150 lymph nodes which were (diseased/deceased).  Parathyroid was damaged and I had IV calcium treatments for 5 days and then daily pills after.  I was put on 100 mg of synthroid.  Determined that was too low and was upped to 200.  for a couple weeks.  I had 3 RAI treatments across the next 2 years before I was declared cancer free.  6 years later I had to have the left submandibular gland removed because the RAI'S had turned it to stone.  I am almost 9 years cancer free.

Today, at my ultrasound they found a suspicious lump .. they have no idea what it is.  Have to wait and see till they do the report.  A few hours later, my family doctor phones me and informs me my TSH which is supposed to be suppressed and below .5 is now sitting at 50.  I am 50 times the limit.  My nightmare is beginning all over again.

I have not been sleeping well, my skin is so super dry with my legs looking like a desert with cracks in it.  I know I am very hypothyroid right now.  Not good.  I started putting weight back on.  I am currently 100 pounds overweight.

So needless to say, I am scared until they get back to me with all the results. 

Grammitofour
Posts: 3
Joined: Apr 2013

I also had 33 tumours when they found the cancer in both sides of the thyroid with largest being 2.5cm

galinbakersfield
Posts: 23
Joined: Apr 2013

I too have had most the issues that you have had minus the multiple lymph nodes removed. I too had Hashimotos and had a TT in 2008, 2 para-thryoids removed, severe calcemic and low mag and low pot shock, iv's for 2 weeks, then almost 2 days a week for two years. Plus, I was on 2000mg of calcium a day for a year. I've been clean and clear for 5 years. Now, almost 5 years to the day of surgery, I have two spots on the "thyroid bed" and two swollen lymph nodes in my neck. I am currently awaiting a stimulated blood test results (which we are almost sure are going to be high for thyroglobulin (cancer tracer) and then do a PET scan to see if/where it has spread, then see surgeon. Going to have to go back in and remove it. I'm just scared it's spread. I was never told that I had cancer until I just got my medical records, nor was I ever told it can come back. I too am on here trying to get the same info. The only comforting thing for me is that I have a Dr who doesn't want me dead this time. 

Not trying to compare, just letting you know there are others out there in a similar situation. Not happy and scared. :) 

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