Hi everyone -
I have been reading all posts like crazy and thought I should finally stop lurking. I'm a 42 year old female with thyroid issues. I recently received my FNB result of "Suspicious for follicular neoplasm in a background of marked lymphocytic thyroiditis".My thyroid scan and uptake says," There is a mass of functioning thyroid tissue extending inferiorly from the right thyroid lobe. This may represent a hyperfunctioning nodule or an area of normal thyroid tissue distorted by an underlying cold nodule." I'm scared to death. I have read all that I can on follicular neoplasm and realize that it might not be malignant, however, I'm still terrified. I started having back pain(stress??) and am convinced that I not only have cancer, but that it has spread to my spine.Deep down, I know that I'm doing this to myself with all this worry. I wanted to thank everyone on this forum for all the support that is here. Just reading your posts makes me feel like I'm not alone. If anyone can offer me anything encouraging, I'd appreciate it. I have an appt. with a great surgeon on July, 10th, so I have a long time to wait and drive myself crazy!
OMG... I could have written that post myself... I had 3 biopsies which were all benign, but I had a Tg level that was through the roof (had it done 3 times, normal is under 56 and my lowest was 2480) so 3 of the endos I consulted with (I consulted with a total of 6 prior to surgery) said they had never seen Tg levels that high result in a benign thyroid and there was concern that the biopsies "missed" the cancer and most likely it was Follicular.
ANYWAY... what I'm getting at is that I did all the research like you and found that Follicular cancer does spike Tg levels more than papillary and that it more often spreads through the bloodstream than the lymphatic system... and I had back pain, like you. More specifically I had pain on my spine (the most common place for it to spread when it does go to bone) that had been there since December... feels like a bruise, but there is nothing there. I had an Xray done that showed nothing, but is not always sensitive enough to detect metastatic cancers. ON TOP of the bone pain, I also was coughing up black stuff so I was convinced I had metastes to the lungs as well. At this point it probably doesn't sound like I'm being very reassuring here, but let me reassure you... I had a TT thyroidectomy on May 11 and it was totally benign. It was just really poor timing to have acute bronchitis (the black stuff/old blood went away after 6 days of antibiotics) and the spinal pain... well... still not sure... I have an MRI on Friday b/c I went to a new GP who is wonderful and is doing it just to put my mind at ease and give me a "clean slate" so I can stop worrying.
The bottom line is... we all have normal aches and pains and it's SOOOO easy to read into them when there is worry of something big. However, Follicular cancer is the second most common ThyCa and is very treatable. I know that doesn't help you not worry, but now that I've had the TT and I look back I wish I had been able to talk myself down. Interpreting every minor ache, pain, twitch as cancer took a huge toll on me... mentally, physically, and emotionally... and even though I know I'm okay now... I am still dealing with the stress. It gets better each day, but it's not gone. I have vowed to myself that I will NOT spend hours researching something, nor will I go for 6 opinions again in the future... TOO much information can be a bad thing. The internet is great for some research, but it doesn't always give us the right context.
I hope this isn't sounding like I"m trying to minimize your worry... I'm just trying to say that it's valid b/c you feel it, but try to remember that your back could ache b/c you slept on it wrong, or you were on your feet more than usual one day, or... sadly... we're just getting older. ;)
I hope that helps and if it doesn't, I'm sorry. I'm not always as articulate as I'd like, but knowing that someone else has been in your shoes, hopefully helps.
My FNA in January noted "follicular neoplasm" and my endo then referred me to an ENT surgeon because the only way to know for sure if it's cancer or not is to remove it and examine it carefully. I had the right side removed in Feb. and unfortunately got a papillary carcinoma diagnosis....it was quite small, 6mm. I waited 3 months for the TT surgery.....had that 4 weeks ago. No more cancer was found and I need no other treatment , except thryoid hormone replacement. The recovery was relatively easy. The waiting and 'mind games' that go on in our brains is way worse than the actual surgery.....
It's important to have a surgeon who's expereinced with thyroids. My pahtology report said chronic lymphocytic thyroiditis, which is Hashimoto'ts disease, and it causes hypothyroidsm. at least it did for me. Hypothyroidism causes body and bone aches, among other symptoms.
Hang in there! Write down your questions in a notebook so when you do see your doctor you'll remember your questions. Your endocrinologist may be reachable by phone if you're really needing some answers. My surgeon describe here role as 'the technician', just following the endrinologist's orders (to remove the right lobe). Your endocrinologist be who you'll need to talk to about questions directly related to the thyroid.
Best of luck....Keep reading this forum.....you'll learn a lot and find out there's lots of us who have been where you are now......and it is scarey at first. But it does get better.
My nodule was FNA as atypical follicular cells ... turns out they were totally benign upon frozen and final biopsy .. they were adenomas .. overgrowth of thyroid tissue.
Upon my partial they did find 2 incidental findings of papillary cancer .. very small and fully encapsulated so I have decided after a few opinions to wait and watch the other side carefully. I have a 3mm small nodule that is "stable" and I am on Synthroid for Cancer supression. My Pap Ca was only .4mm and 5mm respectively (something close to those #s as I recall) and no lymph node involvement.
Your back is probably stress from sitting on the PC and reading. I bet you that is it!
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