hemithyroidectomy for 15mm papillary with follicular variant nodule...........help

sonicsuzie

My questions are at the end...........sorry I got a little long winded.

 

I have had an unbelivable adventure with my thyroid diagnosis.  I was formally diagnosed with papillary cancer with follicular variant from a biopsy that was done at the hospital I worked at at the time ...........on disability now.  The results were the lymph node was positive for papilary with follicular variant and the nodule in the left lobe of my thyroid was diagnosed suspicious for papillary cancer.  I was scheduled for a total thyroidectomy and bilateral resection because I had a ton of lymph nodes.  My endocrinologist where I live in Myrtle Beach could not get me on the schedule for a while so I called my ENT and turned out the head big shot at UNC was a Fraternity Brother from college.  We are kind of out in the middle of nowhere here.  Specialists are like gold and you will always wait 3 months for an appointment.

Four days before surgery my surgeon calls me himself from UNC Chapel Hill that we were canceling that surgery because his pathologist looked at the slides and disagrees with the first diagnosis.  This was a tough one because I am a sonographer.  I am the one who assists the radiologist when they do the biopsies at my hospital.  I have worked with this pathologist for 8 years and we are a small country hospital but this guy is good.  He has never as far as I know from chatting with the doctors and surgeons been wrong.

On the other hand I have the head of the head and neck oncology center at a highly repected university saying lets re do the biopsy.  So even though it was grueling on my nerves we did it. The new biopsy determines the lymph node under my mandible was completely negative.  The nodule was positive for papillary carcinoma with good borders,"no vascular invasion" and well circumscribed in my thyroid.  All this means is the nodule was well contained within an area easy to get to etc.  Next thing I know I get a phone call from the surgeon scheduling my surgery for a left hemithyroidectomy because the borders were so clean.  He would not let me get a word in edgewise.....................well he knew me.  I am one of the biggest pain in the **** patients because I know my human anatomy and physiology. you have to inorder to do my job.  I am not the kind of patient they like, I come in with pad and pen in my hand with my list of questions etc.

Well rule #1 if the nodule is over 10 mm the entire thyroid is to be removed.  I asked Dr. Bigshot at UNC about that and he said it was so early that we found this {btw-being that I sm an ultrasound tech I am the one who found it first because I hadn't felt well in about a year an though I felt a lump.  So this magnified my anxiety because I know to much.............lol....any way it was 4 mm when I found it.}  I started measring it every two weeks and took the pics to my ENT because he is a friend of mine and he gave me an order to get a real ultrasound and tried to get me in with an endocrinologist..............hense 3 months later, that is when he said screw it youre going straight to the surgeon.

Rule#2-post op nuc med scan should be done................couldn't do that because they left the other side in.  Meanwhile I have symptoms of possible bone spread in upper back and enlarged lymph nodes all over the place.  No one had ordered any type of test for mets. 

 

so......................................I did a self referral to MUSC in Charleston.  Had an appointment within a week.  Basically doing a second opinion backwards.  The oncologist there is not happy at all with the fact he left half of my thyroid.  Second of all they told me in Myrtle Beach my bloodwork was normal.  For someone who has not had cancer it was.  I did not know this one but once you have had cancer they want your tsh at 1.0 or lower and four 3 months mine was close to 5.

She is 3 hours from me so we have been doing blood work and she has been adjusting my meds trying to stabilize me. it is like riding a roller coaster.  I feel good for a day or two then I feel like it is a project to get out of bed....................................I cannot believe such a small thing in our body can do so much to us.  I feel horrible most days.  And I am a warrior............I had lyme disease for 10 years that went undiagnosed and was told I had everything from ms to lupus or that I was a nut case. Forty something doctors later a resident working with my pain management doctor.  He saw my AT patch on my back pack (Appalachian Trail} and he asked me a bunch of questions and I just started crying because I had suspected that was what it was.  He hooked me up with a doctor that only treated AIDS AND LYME. Ended up by the time I got to him I had fluid around my brain ...........I not only had lyme I had coinfections one was Babesia spelling? and the other ehricliosis.  Took 3 years and a whole lot of antibiotics to get well again.  I had left over symptoms but I was greatful to be upright and able to work again. 

sorry I know this has been all over the place...........welcome to my brain.

 

What I want to know is have any of you had one side out only to have to go and get the other side out later?  If they do no remove all the thyroid, how do we know if it has spread anywhere?

Any feedback welcome