5/8/17 Sometimes, I feel like the endocrinologists office is the most unorganized office ever. They brought us back into the room and said the doctor would be in soon. Well he came in, opened my chart, and didn’t have the results he needed, so he walked back out. We could hear him asking the nurses where everything is and why he doesn’t have the results. He had them call the hospital. It made me wonder how he was able to give me the results over the phone last week when he didn’t have the report. Finally, he was able to get the results read to him over the phone, and wrote it down to be able to talk to me. He explained a little more that the reason that the biopsy can’t test for follicular cell cancer of the thyroid is because the thyroid is made of follicular cells, so they are unable to determine if those follicular cells should have been there or not. The only way to test that is by removing the nodule and doing a full pathology on the entire thing. We discussed surgery, and he again said he wants to have the left removed, then test it, and if it’s malignant go back for the right. But he said he is pretty confident that it is a benign tumor. I asked what the other options are, and he said we can either do the surgery now, or wait about 6 months to do another ultrasound and another biopsy and go from there, but it would probably end in surgery either way, so we will go with surgery now. I then told him that I would rather do the whole thing at once, partly because we already know there is a cyst on the right side, and also because I have a family history of having a hard time with anesthesia. As soon as I told him that, he immediately said that we can look at removing it all at once if that’s what I wanted. He said the next step is to find a surgeon who takes my insurance and can do the surgery. He gave me the names of a few surgeons to call, but said I would have to come back next Monday to get the full report and a letter from him to take to the surgeon. In the meantime, call to find a surgeon and set up a consult. So we left still not knowing a whole lot. When we were halfway home, they called and asked if we could turn around, he just got the report faxed, so we did. We went back in the office, and the doctor came in and gave me a copy of the biopsy report, and wrote a letter to give the surgeon as my referral. I told him I had looked up the surgeon he gave me the information for on the way home and the hospital he operates out of doesn’t accept my insurance, so he gave me a few more names and said if none of them do, then to call my insurance. Once we got the information we needed, he had me set up an appointment for June 12 to hopefully be a follow up appointment with him after the surgery is done, and gave me an order to have some blood work done a few days before so that he would have the results in by the time I see him again.
Questions I asked my endocrinologist and his answers:
- Which type of cancer wasn’t ruled out? Follicular cancer
- Would surgery remove only the nodule or entire lobe? Entire left lobe
- Would it be better to just remove it all at once? We can with family history of trouble with anesthesia, and also depends on results of intra-operative results
- What’s the typical recovery? 1-2 weeks
- If we remove only the left lobe would I still need meds? Possibly, all depends on my body
- Can the nodule be biopsied while under to avoid multiple surgeries? Partial frozen section will be done for preliminary results, but full test takes two days.
- How long does the surgery take? Depends on how much they take, usually about 2 hours
5/9/17 We got home from the endocrinologists office too late yesterday to start calling surgeons, their offices would have been closed. So this morning I got up and called the 3 that my endo recommended. Of course, none of them took my insurance. So I logged in to my insurance website and did a provider search for surgeons and started calling down the list. I was getting very frustrated because even though the list was from my insurance, when I called they all said they don’t accept or participate with my insurance. I called 7 different surgeons until I found one who finally accepted the insurance, but they couldn’t even get me in for the consult until June 5th. I was really hoping to have the surgery done before then, but I booked the appointment anyways, in case I couldn’t find anything else and figured I would call a few times to see if they had cancellations. This doctor’s office is on the other side of town, and he doesn’t operate out of the hospital I was hoping to go to. I called 6 more from my insurance list, and none of them took the insurance, or they didn’t do thyroidectomy. Finally I went to the Kingwood Medical website, since I know the hospital takes my insurance since the biopsy was done there, and that’s the hospital I preferred to go to. I went to their list of providers, and looked up their general surgeons. One of them had a long list of accepted insurances, so I called his office and they took my insurance, and could get me in the next Thursday for a consult. I kept both appointments, in case we met with this surgeon and weren’t comfortable with him. So at that point, there was nothing to do until that appointment. I took the time to go back through all my photos to see when I first notice the nodule, and I can see it as far back as January of 2015! I couldn’t believe no one noticed it that far back, but it also made me feel more confident that this isn’t any kind of thyroid cancer because I feel like it would have grown quicker than that.
5/13/17 I am now 15 days post-biopsy and the bruise is finally gone. Less than one week until we meet with the surgeon and I’m starting to feel the nerves again about it all, especially when I lay down at night and just think. At this point, I just tried to make the most of the time with the boys before surgery because I know after that I won’t be able to do much for a while.
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