Join Date: Jun 2005
| | Re: Thyroid cancer - after two surgeries, now in radioiodine therapy quarantine
Thanks for your reply.
Actually, my story is kind of a long one. Back in Nov '03 during a gyn exam the doc noticed an enlarged right thyroid while feeling my neck. She recommended I have it examined. I didn't have insurance at the time, so I went to an income based clinic. They began running various tests, from and ultrasound, to a CT scan, to a thyroid uptake scan, over the next 4 months, all of which came back saying there was an enlarged thyroid with cysts in the muscle on the right side. This was incredibly annoying, as I had to pay 40% of the bills, and really the tests were all coming back inconclusive as to what exactly it was. Then, finally, I was referred to an ENT, or said that it was probably nothing to worry about, based on my age (25 at the time), but that he recommended a needle biopsy to be sure.
Then, a month later, shortly before said biopsy, I found out I was pregnant. Such a blessed surprise, as my husband and I had been trying for almost a year but had put our plans on hold until we found out what was up with my thyroid.
So, luckily, then I was able to obtain state based insurance. However, unluckily, the ENT I had seen before did not accept this insurance, so I was referred to another ENT. One that should be retired already, and not just because of his age. He kept telling me that these cysts weren't anything to worry about, and that people biopsy stuff too much these days because they panic. Which sounded ridiculous to me, but the reason I didn't protest at the time was because he told me that they couldn't do anything until after I had the baby anyway (which of course I found out later to be untrue).
So, throughout my pregnancy I kept an eye on the size of the growth and it seemed to remain the same, until the last couple months of my pregnancy. AFter I had my daughter in Feb. 05, I called this ENT a couple weeks postpartum. Went in to see him, and he's like, yes, it's definitely gotten bigger and you should have it looked at. And he didn't even tell me that he was sending me to a surgeon, I thought it was an ENT that specializes in this type of case, until I walked in the door of the doctor's the day of my apptmt.
So, this general surgeon is like, yes, you definitely should have your thyroid out. We'll remove the right side only, unless it looks cancerous, then we'll remove as much of the thyroid as we can. So I scheduled for surgery the next week. (I'll give you details on the actual procedure later in the post.) I had the surgery, he said it looked like cancer so they took out 95 percent of the thyroid. Then about a week or so later I was referred to an endocrinologist, who felt my neck and immediately felt more cysts on the right side of my thyroid, no surprise to me, as I had felt one lump and knew it had been there before the surgery. So, he did a needle biopsy and immediately knew that they were cancerous.
Time for the next surgery. This time the general surgeon referred me to an ENT surgeon (coincidentally, the same one I saw before I got pregnant), and thank god for that, because I didn't want the first surgeon cutting on me again. The second surgery I had was a modified radical neck dissection. But before he did anything surgically, he ordered a CT scan to see exactly where lumps were, something that the first surgeon should have done. I'm now almost 4 weeks post op from this surgery. I had my RAI therapy last Wednesday, and as I mentioned before the torture is being seperated from by baby, and having to quit breastfeeding her - all of which happened very quickly, as I thought I had a few more weeks to take care of these things, but my endo said he didn't want to wait because my tumors were so large.
As far as my surgeries go. The first was the Thyroidectomy. The general surgeon did this. Personally, after my experience, I recommend an ENT or specialist surgeon. Mine did have experience in this type of surgery, but obviously not enough, as he should have run a CT scan to know everything that was goin on, but didn't. I might have had only one surgery, or at least known ahead of time I'd have to have two, but he was delinquent in that. They make an incision along the base of your throat, remove part or most of your thyroid, depending, and stitch you back up. I had a running suture afterward which dissolved on it's own. My tumor was very large, over 4 cm. Also, when I went back for my 1week follow up, he told me that he's confident they got all the cancer because the margins around the tumor were cancer free. Later, my endo told me that that doesn't mean anything for papillary cancer b/c it is like weeds where you can have some here and some there. When I awoke from the surgery I was in extreme pain. They gave me morphine 3 or 4 times and then some antinausea med b/c the morphine made me sick. AFter that, I was fine for pain in the incision area. I took some tylenol later a couple times, but that was about it. My throat hurt very badly and it was very hard to swallow. I was on clear liquids for 2 days then gradually worked back to solid foods by day 4. I just made sure I chewed everything thoroughly. The nerve to my right vocal chord was damaged (hopefully not permanently), I still don't know as my voice is not the same as it was before. Although it is considerably better than directly after surgery, when I could barely speak at all. I did know this was a possibility beforehand.
My second surgeon was the exact opposite. I had complete faith in him. I believed he knew what he was doing, and was proved correct after my surgery. The modified radical neck dissection included the removal of 25 lymph nodes, the sternomas muscle, the jugular vein, and a minor nerve. It's considered modified because he was able to save the major nerve along my neck. What is amazing is that even though this surgery was so much more major, I was in less pain when I awoke, my throat barely hurt (even though I was told it would be alot worse than the first time) and I was able to eat regular food upon awaking from surgery. The only worse thing is that I had to stay in the hospital for 3 days as opposed to 1 w/ the first surgery. That in itself was pure torture. Hospitals are the worst place to try to recuperate, as you constantly have nurses coming in to do whatever they needed to. Anyway, I pray you dont' have to have this surgery be/c the aftereffects, while manageable, are a pain thus far. my right ear and part of my neck and face are numb from the removal or the nerver. Some of the feeling will come back but some numbness will remain permanent. My face is still swollen from the removal of my lymph nodes and jugular vein, which my doc says could take up to six months to go down. Also, I have to go to phys therapy twice a week to work my shoulder and neck.
But, all in all, it's worth it to get the cancer out, and I pray it will be all gone when the scan comes next week and in 6 months.
Sorry for the looooooooooooong post, but wanted you to be aware of the possibilities. Again, just make sure you trust the doctors that care for you.
Last edited by lis1332; 06-05-2005 at 09:25 AM.
Reason: Hit submit too soon