Hi everyone, new here and looking for support and/or information. I posted this on the CB a bit ago, but stumbled across this thread during a search. I hope you don't mind my long post.
Sitting here counting the days (okay, minutes) until my results from an FNA performed 7 days ago. I won't get the results until this Friday (so 10 days total) because my @#$@ ENT doctor said something vaguely about how she doesn't call with results b/c she likes to "look people in the eye" while she tells them their results. Frankly, I am certifiable at this point.
My story. Again, this is really, really long, but I am a full-disclosure kind of person in hopes that it gives an accurate picture. Sorry for the novel:
My mother had Graves disease 20 years ago: thyroid nuked, done well on meds since. My older sister has Hypo with Hashimotos: bad off, numbers in constant flux. Had nodules, with benign FNA years ago. Claims they swell now and again when meds off, but her doc hasn't given her an US since. In 2001, at 28, I was diagnosed with mild hypo and my endo found 2 small nodules. She biopsied them and they came out benign. My hypo, honestly, didn't give me much in the way of obvious symptoms. I just took my pills, and that was it.
I moved to a new city the next year, and just found a GP in our new city (I'd HATED my endo). I told her about the nodules, etc, but we could never get my endo to send over my records. In 2006, my GP had me do a thyroid sonogram just to get some idea of what was there. I never really heard anything about that sonogram after that. During this time and since then, occasionally out of the blue I'll get those sudden heart pounding episodes for no reason. Numbers still looked good, no other symptoms, so ???.
In 2008, I started trying to eat better and dropped 20 pounds. I was still quite overweight despite the loss, just fyi. Suddenly, after the loss, my numbers swung closer to hyper. My doctor tried dropping the med dosage, then had me stop taking it all together. Since then, my thyroid tests have been normal without the meds. We assumed it was due to the weight loss, but my subsequent regaining of the weight (sigh) didn't effect anything. My latest test showed:
TSH: 2.9
T4: 10 (not sure why I don't have T3 in my records)
In December, (I'm now 39) I went in for a lump on my leg I thought was an ingrown hair. My doc thought it was basal cell carcinoma. This made her think about my thyroid nodules again, so she referred me to both a dermatologist and for an updated sonogram (again, last was 2006). The lump came out no cancer, thought some mildly atypical cells (yay...sort of), but the sonogram showed changes to my thyroid. I was referred me to an ENT for an FNA. At the ENT, I learned the following:
Original nodule: grown from .8 cm to 1.6 cm
New nodule: not present in 2006 sonogram, now 2.0 cm
Second new nodule: size of lentil, considered inconsequential
When I mentioned that my original Endo had told me I had two nodules in 2001, the ENT said that my scan in 2006 only showed the one. Huh?? I honestly have no idea what the size of those nodules were in 2001, sadly. She told me the good statistics, which I'd already known (or thought I knew) through reading. And given those stats, plus my last nodule being benign, I felt pretty confident. I mean, even if it's thyroid cancer, I learned it's "an easy fix" and CURED! My dad had survived lung cancer, so in comparison that sounded like a walk in the park.
God, what a fool I am.
So I went for the FNA, and for some reason the orders only stated to have one nodule biopsied. I spoke up and said they were concerned about two. The technician said the radiologist had only ordered one, but when he came in she told him what I said. Thank goodness! He had her do a quick scan, and said, "yeah, we definitely want to do both of those." There go my nerves. During the scan, this is what I heard the tech say to the radiologist: "the front one is really well defined, but that larger one [the newer one] looks really irregular" and "well, it's definitely got blood flow".
I got home and started doing research on what was said. Immediately I saw that poorly defined borders and blood flow are good indications of malignancy. Still, I thought, "okay, you can deal with this. Everything you read said most thyroid cancer is very very curable and simple."
Except, of course, now I know it's not. And this thing might have been in me for 5 years now.
Now that I've looked past the dry medical websites into real studies and people's experiences, I'm so scared. I've read how common it is that even the most curable one, papillary, ends up being in the neck lymph nodes. And how debilitating the resulting neck dissection surgery can be. I read that up to 30% of papillary cancer reoccurs, and often years later. I also read that under age 45 (some reports say 40), your chances are great, but over 45 it drops a lot. I'm 40 in June. And that's just papillary, the supposed "good one" to get. Of course, there's all the pain of going hypo I've read. I've learned quickly that this is not the easy process doctors try to say it is.
Also, I'm 7 weeks pregnant. In October I was diagnosed with a missed miscarriage at 8 weeks for what would have been my first child after over a year of TTC. I found out about the pregnancy right before I found about the nodules. I also found out at 4 weeks that my progesterone is low: they want 15-20 at that time, mine was 13.5. This is not good. Add in only mild pregnancy symptoms so far, and there just isn't much hope for this pregnancy. I go in for my first ultrasound a week after I see the ENT for my results.
I'm just a mess. Add in hormones, and I'm a weeping mess. Do I have cancer, will the baby survive? If I have cancer, and the baby survives, I will have to put off RAI until after the birth and that means no breastfeeding, no holding my own child for too long. If I have cancer and the baby doesn't survive, the RAI pretty much takes my already low chance of conceiving (at my age) and destroys it.
I know these are things I shouldn't be thinking about. I know I don't even have information yet. So what's the use in driving myself insane? But it just feels like bad news is on the way. There's just been so much of it lately. And ten days is a long, long time to keep the brain from taking over and overheating.
Again, so sorry for the War & Peace length post. I just need to talk to real people. As wonderful as DH has been, I feel very alone in this "waiting it out" void.
you sure do have a lot on your plate right now. I am sure the waiting is too much right now.
Would someone please tell me when all that supposed wisdom is supposed to kick in?
