good news, bad news?

My ENT called this afternoon. He is my favorite doctor of all time, which is saying something since my OB saw me through three pregnancies and is completely wonderful, too.

Anyway, Dr. O called to tell me that my hearing test came back perfect, which is the good news.

The bad news is that he wants to see me to follow-up on the results of the neck ultrasound I had a few weeks ago. My endocrinologist was OK with that lymph node it identified in my left neck, but he wants to take a look. I respect his opinion, so I made an appointment and will be seeing him next Wednesday.

This isn't really bad news, and I'm trying not to get worked up about it. He's just being thorough, after all. My TSH was so low (0.03) and my Tg (thyroglobulin, my tumor marker) has dropped from 0.28 to 0.23, so, nothing to worry about, right? (I admit, I would be much happier if it would come back truly undetectable, so far that's not happening.)

Since I'm in here talking about health-related issues, I've got a trifecta of freakish injuries running: 1) a slight case of tendonitis in my left Achilles that's going on its fourth week now 2) bruised index and middle fingers on my right hand that I have no memory of injuring; I must have smacked something really hard and 3) muscle strain in my right neck/shoulder I think from the combination of too much phone time and falling asleep in an awkward position on the couch. When I wake up in the morning I can't walk because my left leg is so tensed up, and my right hand is frozen. The headaches that descend when the ibuprofen wears off are so reminiscent of those I had post-op after my neck dissection it's depressing. Taking the aforementioned ibuprofen and judicious stretching gets everything moving again, but this has been a rough couple of weeks.

KO'd

(posted on the Thyca Support Group)
I just got back from a follow-up ultrasound with my endo. My Tg at my last bloodwork a couple of weeks ago was 1.4, and she wasn't happy about that, so ordered the u/s. I've been noticing more trouble swallowing lately but was hoping it was scar tissue.

Apparently there are a lot of nodes and they are pretty sizeable. I have copies of the u/s films giving measurements for 5 different nodes along the right cervical chain. One was big enough that she decided to do an FNA on the spot.

So she's sending me to MD Anderson Cancer Center in Houston for evaluation and treatment. She said that at 3 months post RAI, there was still too much going on in there. I know that RAI continues to work for 6 months and sometimes even longer, but I didn't argue with her.

---

If anyone has any advice on retrieving rugs that have been pulled out from under you, I'd appreciate it. I was just starting to get into a groove here, getting a good routine going with the kids and arranging things so I could start swimming myself. I'm going to try to hang onto it as long as I can, but if I'm going to TX for God-only-knows-how-long, and having the most horrific surgery imaginable, it's going to be hard to keep it up.

This is so NOT FAIR to my family. Why should they have to put up with this? Why can't we just be normal?

All my (short-term) hopes are now dashed. I'm cycling between fear, sadness, and anger, having just hit the "pissed off" stage while typing that last paragraph. I have no idea how it's all going to work, or what the timing of anything will be. This is not exactly the kind of news you want to hear any time, but it totally sucks being put into the referral loop the day before a long weekend starts. That means literally nothing can happen for the next 3 days.

I can't do a thing until I hear from someone who tells me what I need to do. So I guess I will try not to obsess (ha) and relax while I can. Meanwhile:

AAAUUUUGGGGGHHHHHH!

when all you have is a hammer...

...everything looks like a nail.

I understand that human nature dictates that we always think that our professional solution is the right one. It doesn't surprise me that my surgeon wants to operate, or that my NucMed doctor wants to give me another round of RAI.

But I have to weigh this factor in deciding what course of treatment I'll follow. And since I'm already in "off label" territory as far as Thyrogen treatment is concerned, I'm not exactly sure where I'm going to end up.

Today I called the NucMed department and got my schedule for my injections, tracer dose, and scan next week. The plan is to get injections on Tuesday and Wednesday, tracer dose Thursday, then the scan Friday.

That all sounds OK, but then the scheduler continued: We'll also treat you on Friday if the scan is positive.

Wait just a minute, there, Missy! What do you mean? First of all, treatment means going into isolation for at least 3 days, and it's not something I can just jump into.

Second, even if the scan is positive, will another round of RAI now be the best way to treat it? In my discussions with my endo, she talked about getting the WBS and then following up with CT or other scans to get good localizations on whatever is there, and then determining a course of treatment.

However, the Thyrogen is short-acting, and if I don't get treated Friday, I will have to go hypo (off thyroid meds for at least 4 weeks) before I could be treated, or I could try to request another round of Thyrogen but it's likely that the insurance company would deny it.

There's also the fact that Thyrogen isn't even commonly used for people who have not yet had a "clean" (that is, cancer-free) scan, and this is my first follow-up and we're about 100% sure that this scan is not going to be clean. This the "off label" usage I mentioned above.

But actually treating me while on Thyrogen stim is even further off-label! The Thyrogen Patient Information Kit (pdf) even says, Your thyroid hormone therapy must also be stopped if your tests show that you need 131I treatment.

I'm sure there are studies out there showing that it can be effective, and I know approval for this usage is something that the drug manufacturers are pursuing, but that doesn't mean I want to be a de facto uncompensated test case.

In addition, I'm not convinced that RAI is the way to go if it's in the lymph system, which is what my first WBS showed: multiple nodes in the neck and chest. At the time of that scan, I had just been nuked with 206 mCi of RAI, and the hope was that the radiation would clean out those nodes and anything else that might be lurking around. On examination at the beginning of May, my endo found at least 3 suspicious nodes in my neck.

Do I think I still have cancer in my nodes? You bet. Do I think the RAI can get it out of there? Honestly, I know there's a chance that it might, but I also know that historically, surgery (or ethanol ablation) is a much more effective method of eliminating cancerous nodes.

If I have RAI next Friday, they won't do anything else to me until the fall, at least 6 months out. On one hand, that could be a good thing as I could enjoy my summer. On the other hand, I have no confidence that further RAI is going to be all I need, so I'll just have surgery hanging over my head if they do the RAI now -- and the Thyrogen-stim RAI treatment still has me shaking my head. What to do, what to do?

No decisions can be made until after the scan, obviously. But I'm not going blindly into an off-label, less-than-effective treatment just because my NucMed doctor has a hammer and sees my thyca as a nail.

calm before the storm?

Two things of import today: first, I saw my ENT, and he was great. Second, I got my reports from the whole body scans (WBS) I had done after my RAI treatment. My ENT got them about the same time I did, since his office staff faxed them over to me when they arrived there. (Thanks, Pam -- you are a gem!)

The fax comes in, I'm reading it over, and get to the money graf:

Impression:
Radioiodine accumulation in multiple lymph nodes in the neck and upper chest and possibly in residual thyroid tissue. There is no evidence of distant metastatic disease.

First reaction: yay! no distant metastases.

Second reaction: multiple lymph nodes?! No one ever said anything about lymph nodes before. My impression had been that all the uptake in the neck was from residual thyroid tissue. Hmmmm....

Around the time I'm thinking, "Hmmmm...." the phone rings; it's the ENT. He just read the scan report, too, and wants to know: Did I have a neck dissection? Was I scheduled for one?

Well, no. I reviewed the treatment/management plan with him and said I was OK with it. I am, for now -- because next week I'm having bloodwork done again. If my Tg is up again, I will not wait for May for a scan, etc. I will push for earlier treatment, I have pretty much decided.

Treatment, however, is almost certain to be a neck dissection, because lymph nodes are typically resistant to RAI.

I'm doing well not freaking out because there was some balancing good news. The large mass that was identified on my neck u/s following the TT is no longer there! The ENT told me that he would certainly have felt it in my skinny neck (he was much more diplomatic in how he put it), and since that large mass was assumed to be a bunch of swollen lymph nodes, that's a good thing, right? Oh, who knows? I sure don't.

I'll have more information next week, and maybe then I'll be freaking out. But I'm too tired to freak out about some uncertainty.

Other positive things about today: the ENT is obviously fantastic -- he called me. Personally. Not his nurse or assistant, either. That's very cool.
Info from the appointment:
1) He thinks my salivaries will settle down eventually, and that all the swelling under my jawline and in my throat is just a different variant of what's happening with the right parotid gland. I can live with that -- he didn't recommend any invasive procedures or anything else expensive, either. Very cool.
2) He examined my vocal chords (boy, is that a strange process!) and said it looks like there may have been some damage to the supralingual nerve so that the right side is a little wonky, but voice/speech therapy might help with that. He said whenever I want to start, he can give me references -- I told him I will wait to see if I need more treatment, first. (Next week is going to be very interesting.)

All in all it was a very positive experience, and I'm happy to have this guy be part of my medical team.

My endo, Dr M, called today, too, which is a miracle. The message was barely 3 hours old. She OK'd me dropping my Cytomel dosage from 20mcg down to 15mcg. Whew. I was really not feeling well on so much. I'm very interested to see if I have any TSH at all next week! I talked to Dr M about the ENT's concerns about the lymph nodes, but she seemed satisfied that we were handling it all properly.

So I'm not freaking out yet, but I've already warned DH that if I need a neck dissection I will do some crying. It is getting to the point where I'm getting a phobia about being cut -- too many surgeries and biopsies and whatnots. Too many stitches. Too many scars. Too many assaults on my body!

But if they can go in and clean me out one more time so I can be done with it, that would be worth it! Another concern I have, can we do this in such a way that I can still have my super fantastic summer on Cape Cod? I hope so. I don't think I want to wait until August, when we get home again, to deal with this.

What a day.