Apparently, endocrinology is simply a guessing game

Miscellaneous and Personal Stuff I Must Share
1

My wife has thyroid cancer. When she was diagnosed a year ago, the doctors did not seem to share the same sense of urgency as us to schedule the removal surgery. When I asked the doctor why this is, he explained that thyroid cancer doesn’t spread rapidly and ravage the rest of the body (paraphrased). We understood, and waited the 4 weeks for surgery.

(As an aside, that is an awful way to live; I would see my wife peek in the mirror and run her fingers over the small-but-noticable lump in her neck. For 4 weeks. “Honey, I think it’s getting bigger. Does it look like it?” I really feel terrible for anyone who has to go to sleep knowing there is a cancer in their body.)

Anyway, a year later and she doesn’t feel any better. So we go to the doctor for her check-up, before which they ran labs. The doctor has looked at the results, and thus begins the most ambiguous conversation with a professional I’ve ever had.

Him: “Hmmm.”
Us: “What’s that Doc? Did you say ‘hmmm’?”
Him: “Yes. I don’t see what I’m looking for here, but maybe it’s just not here.”
Note: Our endocrinologist is NOT Yogi Berra.
Us: “We don’t exactly follow, Doctor.”
Him: “Well, this level is still too high, and this area here might indicate something in the lymph nodes that we did not remove…”
Us: “We had a feeling. So do we run more tests to be certain that we need to go back in for more surgery? We really want to be aggressive in treating this, you understand.”
Him: Says something unintelligible to, the best we can ascertain, his ink pen.
Us: “I’m sorry? Was that a yes?”
him: “Well, there is a chance…and maybe…up these meds…”
Us: …Blank stares…
Him: “So we will go from there. Okay?”

And we wrapped it up. I walked out of that office mad at the doctor, mad at my wife, and mad at the world. Thankfully, we went home and talked about everything he had said, and finally began to see a little humor in it. We have decided that I could probably be an endocrinologist, with my mad BS skillz and repository of large words. See?

2

That is so awful. I am mad at the endocrinologist for you and I don’t even know him.

Hoping for the best for the both of you in the confusing future.

3

Someone I know was diagnosed with thyroid cancer in the last year. She had a couple of weeks of that agonizing waiting you describe before surgery, and she also has decided that whatever it is that was wrong with her that made her go to the doctor in the first place, it wasn’t the thyroid cancer, so she’ll have to start the process all over again.

So I feel for you and your wife.

4

Oof. Got the thyroid troubles myself, and I count on that endocrinologist to stay on his toes and keep me healthy in that respect. He’s great and I’m happy with what he does; I feel good and the thyroid stuff is leveled off with the medication. But if my doc had pulled that “Milton Waddams” incoherent mumbly-type stuff I’d probably find a new doc.
Hey, if muttering under my breath to my ink pen and coffee cup is all it takes to be one of those, I’m *way * ahead of you. :smiley:

5

Frustrating, indeed. Have these words tattooed on your forehead, "Get a second opinion!.

My wife had a partial thyroidectomy about 50 years ago, and never had any problems since. Going for an X-ray of her back for something else, they discovered a “mass” in her neck, so went for an ultrasound. This showed it was a tumor on the remaining thyroid.

So, our family doc said should see a surgeon immediately and recommend one. He arranged for a biopsy and they took several samples. The results were “inconclusive” due to lack of enough tissue.

The surgeon then said she could either have him chop that sucker out, or get another biopsy. She voted for the biopsy, and this time they took seven samples (might as well have sucked the entire thyroid out, eh?), and still not conclusive.

The surgeon insisted she get the entire thyroid removed, so we finally decided to see an endocrinologist, which we should have done in the first place.

He looked at all the pics, took several tests, and said that that tumor had probably been there all the time, and was not anything to worry about. However, just to be safe, said she should get ultra sounds every four months for a while to be sure it did not change in size or shape. It didn’t, and that was more than a year ago.

So, we lucked out on the endocrinologist, and am still mad at the surgeon, who obviously wanted another Mercedes.

So, as I said, get a second, and possibly a third opinion from Board Certified specialists.

And good luck to your wife!

6

My wife appreciates your good wishes.

As far as getting a second opinion, I see the logic in that. It’s just an insurance thing that is keeping us with this doctor. I’m sure that I am making him out to more of a doofus than he really is, but that’s just the bitter me posting.

We certainly understand this. My wife has felt miserable most of the time for the last year since her thyroidectomy. We finally got to the point to where we realized that it is not okay to feel that way, that is not part of the recovery, and that her replacement meds did need to be adjusted. She is already feeling better. I just keep telling her that she has to be proactive in speaking with her doc, instead of taking all of his recommendations at face value. Let him know you still feel like crap, you know?

7

My employer was in practice 32 yrs and I was with him the last 16yrs. I have some advice based on life experience.

  1. There are four types of thyroid cancer. Two that can kill you and two that usually won’t.
  2. Try and go to an Endocrinologist that performs his OWN Ultrasounds and his OWN biopsies. If that cannot be done ask if the radiologist/surgeon works closely with the doctor.
  3. If the biopsy comes back positive get with the surgeon who has done many, many, many, thyroidectomies and have a complete thyroidectomy. You will live long enough to have it develop in the second lobe if you are “lucky”. Completion surgeries create much scar tissue within the neck making followup ultrasound monitoring more difficult. And there is the chance of nerve damage.
  4. Never scrimp on your Thyroid Hormone Replacement pills.
  5. Check out the AACE (American Association of Clinical Endocrinologists) for a new doctor if you are uncomfortable with your current one.
  6. Do not let insurance dictate how aggressive to be against diagnosed cancer-research your options if it is the Big “C”
8

If the thyroid isn’t weird enough, things can happen with the parathyroid glands…

Get at least three opinions, especially where oncology is concerned.

Also, go here and search “thyroid”, “parathyroid” and “thryoid cancer.”

Then, go here.

Also, look for comprehensive cancer centers nearby.

Endocrinology isn’t so much pure guesswork, as, say, hugely complex, where a herd of glands play well together (or not), and simple diagnostic tests don’t say a whole Hell of a lot.

From here, the two “good” ones to get are papillary, mixed papillary/follicular, follicular or Hurthle cell.

The “bad ones” are medullary and anaplastic.

The key, as usual, is early detection and prevention of matastasis.