First off - I am not worried my swollen lymph nodes are a sign cancer has spread since the pathology suggest lymph nodes do not contain cancer cells - but are swollen lymph nodes normal for Hashimoto's?
I just has a thyroid lobectomy and was hoping the definitive diagnosis of cancer or not cancer at my 1 week follow-up appointment today. Instead, I learned that my thyroid and all of my inner-neck area is an inflammation mess and now I have to wait for outside consultation to make the "call". Has anyone else had a thyroidectomy or lobectomy with Hashi's and multinodular goiter and gotten lots of inflammation in the pathology?
Briefly: I am a 37 year old female with multinodular goiter and Hashimoto's diagnosed this year (March and April). My thyroid consists of lots of nodules basically growing in to each other. One of those nodules was hypoechoic on the ultrasound, suspicious for Hurthle cell neoplasm on the biopsy, still suspicious after Afirma test, so I had the right lobe removed last week (8 days ago) to determine if it was cancer and get rid of it.
I've had hypothyroidism symptoms probably for the last 20 years (I gained a lot of weight in my late teens, assumed it was just puberty/college related), lost the weight by becoming a running enthusiast in my 20s and 30s, but definitely have had increasing hypothyroidism symptoms with menstrual irregularities since 2011, gained some more weight 2015-2016 while still exercising a lot and not overeating, lost that weight by increasing my distance running and counting calories. I've also had cold sensitivies, coarse brittle hair, anxiety, dry skin, etc., I just didn't know they were related to a thyroid problem until very recently. So this probably a long term, untreated Hashi's problem. I can't change what I didn't know in the past - but I'm doing something about it now.
Right lobectomy went fine and is healing well.
I received my pathology report today, and they sent three samples for pathology - the right thyroid lobe, what appeared to be a parathyroid adenoma but surgeon couldn't tell (spoiler, it was a swollen lymph node), and a representative swollen lymph node.
For those interested - hear is what my pathology has to say:
The report says:
Right level 6 lymph node excision:
- Lymph node with reactive changes. No neoplasm.
Right neck level 6, suspect parathyroid adenoma, excision:
- Lymph node with reactive changes.
- No parathyroid tissue identified.
Diagnosis: Lymph node, negative for neoplasm. No parathyroid identified.
Thyroid, right lobe, excision:
-Multinodular goiter, see note.
-Lymphocytic thyroiditis
-Follicular nodule with atypical features, final diagnosis pending outside consultation.
Here is a summary of what I believe that note says: Received fresh for frozen section- right thyroid lobe is a 26.4gm, 7.0x3.8x3.0 cm scabrous specimen … The specimen is sectioned serially to reveal multiple (about 8) tan-red nodules measuring up to 2.0x2.0x1.5cm. The largest nodule is submitted for frozen section diagnosis and a slide scraping is made. There is one encapsulated appearing glistening pale tan nodule, 1.1.x1.0x1.0cm. A representative section is submitted for frozen section diagnosis and a slide scraping is made. The remaining cut surfaces reveal a nodular red to pale red-tan cut surface. Representative sections are sequentially submitted from superior to inferior in eight cassettes.
Only additional information I have is that at least one of the nodules has atypical features suggestive of papillary carcinoma; however definitive features are not present. This case will be sent to Mayo Clinical Laboratories for outside consultation.
Swollen lymph nodes doesn't sound great, but the doctor told me that this is a sign that my body is attacking my thyroid and with Hashimoto's (or maybe in my case with Hashimoto's run amok with multinodular goiter) you get lots of swollen lymph nodes in the central compartment and that there is no sign those lymph nodes contain cancer cells. She said in my case it was hard to tell parathyroid tissue from the lymph nodes because there was so much inflammation and that's why she sent the sample, and on this I've read it's common to have parathyroid complications with multinodular goiter so that is understandable and I think she knew what she was doing.
As for the nodule - I'm not sure what I'm supposed to think from the pathology. I'm not entirely sure they are referring to the original suspicious nodule or one of the other 7 when they suggest papillary carcinoma since the one suspicious was for Hurthle cell neoplasm which I believe is a very distinct cell type. What I'm reading is that my thyroid is all kinds of messed up, and it is very hard to tell whether the neoplasm has escaped the encapsulation because the thyroid itself is so inflamed. Apparently, the surgeon told my mom about the inflammation and swollen lymph nodes and potential parathyroid problem, but my mom only remember hearing that I was fine and not anything else.
The doctor keeps insisting that even if it is cancer, the nodule that was suspicious is small (1.1 cm in largest dimension) and that there will be no further treatment for cancer. That is fine with me, as long as they are satisfied that it has not spread anywhere - otherwise I think I have to get the rest of the thyroid removed to determine if it has spread (if they need to do radioactive iodine uptake?) I'm actually not that stressed out about this at this point because it sounds like the main treatment was just to get the nodule out and hopefully I won't need another surgery/RAI, I was just surprised by not having a definitive result yet.
One silver lining - the doctor today acknowledged that with my Hashimoto's I will be more likely to need thyroid hormone in the near future than someone with a healthy half a thyroid, and I will have my first thyroid hormone test post hemithyroidectomy right before my 4 week post-op appointment (I have hypo symptoms so starting hormone would be a move in the right direction).
Also - despite surgery for a very inflamed thyroid, at one week recovery I feel great, not much pain at all (stopped pain meds three days ago), voice is fine, and felt just a "twinge" of calcium deficiency about 12 hours post surgery when swelling started, but drank a glass of milk and no calcium problems since then. Still a few more days until I can start jogging again.
If anyone got to the end of this really long post and has had thyroid surgery - did you also swell up like a ball with bloating after the surgery? My weight went up 7 lbs (from about 154 to 161), now its back down to 154 today - I wasn't worried when it went up so high because it tends to fluctuate a lot throughout the month, but getting into the 160s was a big swing for me.