Back from an unexpectedly long week at the Mayo Clinic. Man, that place is amazing. We thought we were going just for appointments on Tuesday, but then Dr. Stan said "while you're here, I'd like to do more tests." So the one day of appointments turned into four. I had already seen my Marshfield doctor back on April 19th, and at that time, he answered our questions, but essentially deferred all further treatment decisions to Mayo. And I had no idea what to expect from Mayo.
Well, turns out going to the Mayo clinic was a really, really good idea. We found out ALOT. Like, for example, that my right vocal cord is still paralyzed from the original surgery two years ago. I knew that I get a stridor when I jog and that I still have problems swallowing pills, but... honestly... other than that, I had no idea. Apparently all the yelling I have done over the past two years has been left vocal cord only! It's super strong ;). So, whatever. That's not a big deal, because I'm obviously very functional in the speaking, breathing and eating departments. BUT, and this is a very huge BUT... apparently one of the cancerous nodes is lying on the recurrent laryngeal nerve that controls that intact left vocal cord. So, according to the head and neck surgeon, if we tried to cut that lymph node out, and it was stuck to the nerve, we run the very real risk of leaving me with both vocal cords permanently out of commission. Which would mean a forever tracheotomy, a feeding tube, and a return to utter silence. Apparently there are no tests that can be done to see if the cancer IS stuck to the nerve. The only way to find that out is to actually Open up the neck and tug. Which seems like not a good way to find out important information. The flip side of that is, if we don't do anything, there's a definitive possibility that the cancer could grow and invade the nerve itself anyway. So big risks if we do something, big risks if we don't. The largest cancerous lymph node is located right off my aorta. The surgeon said that the only way to get to THAT one is crack my chest open, which does not sound appealing to me at all. The good news, reportedly, with that is that the mediastinum (behind the breast bone) has a lot of spare room, where that node can grow to quite a size without encroaching on anything else, so we could let it be for a good while before the whole chest-cracking scenario has to come into play.
The interventional radiologist, who did my biopsy and would be the one to attempt an ethanol ablation (injecting alcohol into the nodes to kill them... a technique developed and perfected at Mayo and my doctor's original first choice for therapy) called my doctor in the middle of my appointment to say that he did not think that option was a good idea. Apparently, two of three lymph nodes are way too deep in my neck/chest to reach with a needle. He could potentially reach the first one, but... again, it's sitting on that crucial nerve and who knows what would happen if we tried the procedure that close to the nerve. He didn't think that was worth the risk, and I certainly don't either. Not for a 1 of 3 ablation that wouldn't get rid of all the cancerous nodes anyway.
Some encouraging things we found out with testing, however, included the fact that my tumor marker inexplicably plummeted from 13.2 two weeks ago to 3.2. It has NEVER been this low!! WOOT WOOT! Dr. Stan cautioned us about putting too much stock in that number, though, because we're comparing two entirely different labs, with different assays and techniques. Whatever that means. I wanted to celebrate my new low tumor marker, but he didn't quite let us do that, because we now know where the ACTUAL cancer is, and how big it is, so we don't need indirect methods telling us differently. The other encouraging bit of news came from a radiologist, who compared my recent PET/CT with my whole body scan and my old CT scans, and determined that these mets haven't grown that much in a year. GOOD. They are slow growing, and that's reassuring.
So, that leaves our choices as A) watch/wait and do nothing until things get big enough that surgery and/or ethanol ablation is worth the risks they present or B) try radioiodine again. Apparently, surgery usually has a cure rate of about 90%-95%. Ethanol ablation has a cure rate of about 84%. A second round of radiation has a cure rate of about 34%. And it doesn't typically work all that well on lymph nodes, which is why the doctor didn't initially present it as an option, and why they don't do it very much anymore. In my mind, though, 34% is better than the 0% of doing nothing. There are few risks associated with a second round of radioiodine. Dr. Stan said that if I chose to do nothing at this point, he would insist I come back every few months to monitor the status of those lymph nodes, so that we could catch any danger before I lost my vocal cord. Driving 14 hours round trip every few months didn't sound appealing either. So, ding ding ding. Radioiodine it is. Even though he told me not to be overly optimistic about outcome; that it might work completely, buy us a few years by halting growth, or not work at all. It's doing something rather than nothing, the risks are minimal. I said "go for it". So we're going for it. Six weeks to prepare, so D-day is June 14th.
Throughout this week, I've honestly been pretty numb. At first, my reaction disturbed me. These experts were telling me some pretty daunting things, and I just sat there and nodded and asked appropriate questions, and then... went out to dinner with my husband, or went to TJ Maxx, or worked on my computer back at the hotel room. I didn't think much about it, honestly. I legitimately asked myself if I was NORMAL or not, to be so seemingly unconcerned about it all. Every doctor, every nurse, every technician I met was super kind, super gentle, and very compassionate about the "c" word. They didn't sugar coat anything (THANK YOU), but they all said things like "I know this is hard to hear..." or "maybe your pulse is up because we're talking about cancer". I think that actually, though, I just haven't processed any of it. It's all just pure information that I'm taking in. It doesn't seem REAL.
One thing did occur to me tonight, as I was praying in the quiet church during Adoration. The low tumor marker number. I think it was a sign. Over the past 15 months, my TG has done nothing but rise and rise, at first slowly, then a big jump. I think that was God warning me. "Look closer! Get a second opinion! Go somewhere else!" And as soon as I DID go somewhere else, as soon.as I was where I really needed to be..... the number dropped. ALOT. I'm taking that as "you are now where you need to be, doing what you need to do." I feel like God was trying to get my attention, and it just took me awhile to figure out the message and follow it. He's watching out for me, always and still. I just need to pay attention.
I trust You, Lord. Thank you.
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