and by "suspicious for lobectomy" I mean "suspicious for neoplasm/cancer"... was taken by surprise this afternoon and a little too hasty clicking submit. Sorry!
While I was typing out that last comment, my ENT called to let me know what was going on (so great responsiveness from my ENT!)
My hospital should have faxed the results to the ENT first and not my PCP... my ENT had no idea the results were back until I messaged her and had to request they be faxed over... but she read them right away and called me to make sure I understood what everything meant ...
She is pushing me to get the left half out because she doesn't want to take the risk that there is cancer in there and give it a chance to grow more/invade, which is good. She also said that technically only two of the nodules were cancerous since one was fully encapsulated and according to changes in definitions 5 years ago it means one of the three is not cancer, but then said she wants the rest of my thyroid out.
I may have to undergo radioactive iodine uptake tests etc. depending on what they find on the left side. So far nothing seems to have gotten out of the thyroid, but maybe multiple 1cm sized cancers will trigger a radioactive iodine uptake test regardless to make sure nothing has spread??
I have not scheduled surgery yet, but she said she thinks her 1st available will be first week in August, so hopefully I get this all out of the way sooner rather than later (will schedule in a couple of days since the office is closed on July 4th, and she called me after 5pm so too late to schedule with the scheduler today).
I am relieved we are both on the same page about the next step, and now that I've had one surgery and recovery is going really well, I feel less anxious about the next surgery. My ENT said that my remaining right parathyroids (which are still in there after the first surgery because they weren't on the pathology report) should have enough time to heal and should be functioning ok when the left side is removed, but I won't be released from hospital until she checks calcium levels. (Still might not be an overnight stay). I am feeling less anxious about this second surgery because I handled the anesthesia fine, woke up alert and coherent and with it, and I kind of know what to expect. It's not great to "have cancer", but so far nothing is sending serious alarm bells off in my head, just a "get it out before it can do any real damage" feeling, and I feel so much better now that I know what the next step is.
For anyone who is reading this ongoing saga and thinks "wow there's a lot going on with this woman's thyroid", according to my ENT, I have long term untreated Hashimoto's and this is a very unusual case. I'm glad my doctor is on the same page as me for treating it. My grandmother had her whole thyroid removed when she was 47 in 1975, and we don't know if she had cancer or not but it is quite possible she had something similar to me.
Thanks to everyone who has been so supportive with all my posts - I tend to get anxious when I don't understand what is going on/ when I'm not sure what the next step is in treatment, and it's great to have people who have been through similar situations and can offer guidance.
It's probably not wise to speculate as to whether your doctor will want to leave in the left lobe, but I'm guessing she will or she'd have done a TT instead of a partial... so we'll go from there...
Was there an FNA done on the left lobe of your thyroid when the original biopsy was done on the left lobe? If not, that would be the first thing I'd want done since you also have nodules there and on the isthmus. 2.9 cm is big, so I can't imagine she would not have done an FNA on that. If there was FNA done and/or there was nothing suspicious at the time, I'd insist on regular ultrasounds relatively close together to make sure things aren't changing. And if those nodules grow or become altered in any way, insist on an FNA.
I would insist that the endo start thyroid medication immediately because that can sometimes help shrink nodules. Of course, we can't forget that you have the hypo symptoms that have to be dealt with and since you've had them for some time, there's a great likelihood that since a whole thyroid couldn't work hard enough to alleviate them, half of one, certainly can't...
Of course, for your own peace of mind, you could just insist that the remaining lobe and isthmus be removed and get it over with... Then you'd not have the worry of more cancer AND you'd know they would have to start you on thyroid medication...
As far as your path report, I'm sure it was quite a jolt to learn that more than the one nodule was cancer. I'm sorry to hear that.
As has been noted on a previous thread, Hashimoto's is sometimes referred to as "lymphocytic thyroiditis". "nodular hyperplastic changes with background variable nonspecific cytologic atypia" may refer to what has been determined to be papillary cancer. I think you've pretty well pegged the rest of it.
Well, I told you it wasn't wise to speculate... lol I'm glad the endo is on the same page with you as far as having the other lobe removed...
It seems that there's always relief once the plan is in place and we know what direction we're going to go.
If there's a chance you'll need RAI, most likely you'll have to wait to start thyroid medication because you'll have to go off the med for RAI anyway. That's unfortunate, but then once you get on med you won't have to go off again.
Good luck Sarah I just read your thyroid cancer saga. I'm 18 months out from thyroidectomy (pap cancer) and Its not been a fun trip for me more downs then up but at least you found this site much sooner then me. Grace