Before my upcoming appointment with my endocrinologist, I had to have my blood drawn for thyroid testing – TSH and Free T4. A few days later, my results came back good. My TSH was 0.01 ulU/ml with the Standard Range being 0.30-4.5 0.01 ulU/ml and Free my T4 being 1.3 ng/dl out of a Standard Range of 0.7-1.5 ng/dl.
As in the last post, the weird growth was stable. But something spooked my doctor and she urged that I prepare myself for another whole body scan…and that dreaded low iodine diet. Well, seeing that I should be at 115 for my size, but I’m at 125 now, I guess it’s probably a good thing. Grrr…
Good news – Ghirardelli now makes dark chocolate chips that are processed on a non-diary, non-nut, and a non-soy facility. Yay! No iodine worries there. I wonder if I could survive on a diet of this and red wine for those 7-10 diet days.
One of the questions people ask before and after having their cancerous thyroids removed is when will that thick red ugly scar go away. I guess it depends on how healthy you are, if you cover the area with fabric and/or sun screen, and how healthy you eat. Well, I kinda fail at all of that.
I had surgery to remove my thyroid cancer back in March 2016. Someone told me to pinch and rub the scar between my thumb and finger to loosen the fibers to prevent scarring. I think that I tried that, but it felt very weird and painful. I didn’t really worry too much about covering it, and I might have put sun screen on a handful of times. My scar is still present today, although it had faded much. (See photo). This scar fading took nearly two years. I’ll guess that by the end of 2018, the scar should be even lighter in color or perhaps faded into a white line. (I have other surgery scars that are several years old that are a fine white line).
After doing the whole body scan, I went out and had a cheese burger and fries. Over the next three days, I gained back all the weight that I had lost. (It was worth it).
The day after the body scan, my blood was drawn for testing. I had forgotten to come in for the blood work on Monday, the day before first injection, as the doctor wanted to see the thyroid levels in my body before going through the procedure. Oops.
After a week or so, I got a phone call telling me that I needed to schedule an ultrasound as the doctor saw that a node/lump/thing (I don’t have my medical record for the actual term) was getting bigger, indicating possible cancer…again. If the ultrasound showed that the area could be cancer, the next step was another biopsy and then surgery, if the result tested positive for cancer.
Naturally, I wasn’t happy about this and later called my insurance to see if I would have another choice of surgeon if I had thyroid cancer had returned.
I scheduled the ultrasound appointment and when the time came, went in for it. The jelly they coated my throat was warm. I used lots of tissues to remove it when the technician was done. I always miss a spot, usually below an ear. The jelly doesn’t feel as nice when the jelly is cold.
A week or two later, I got another call from my doctor. I was told that the lump/tissue thing was stable, so no biopsy was needed right now. I was told to book another ultrasound appointment in 6-7 months to check on it again.
At this point, I’d rather have them take it out now, so it doesn’t have a chance to grow bigger or into cancer. Also, I’d rather a surgeon cut a different opening to remove that tissue than the same spot in front of my throat. The scar in the front of my throat is slowly disappearing. I don’t want to make the tissue weaker or cause a permanent scar.
I guess if you needed a mandatory way to lose weight, the low-iodine diet is the answer. No diary, no salt, no milk chocolate. Sure, you can have non-iodine salt, but how can you be sure that other companies sure that instead of iodine salt. I didn’t take any chances. I lost 6-7 pounds within two weeks. My stomach was flat again. (Okay, I enjoyed that while it lasted (2-3 days) afterI got back on my regular diet of nearly everything).
You can have alcohol on the low-iodine diet, but it’s not recommended, as your body is essentially detoxing. I tried drinking a beer. I had a few sips and dumped the rest. It tasted so gross. (It probably doesn’t help that I really don’t drink anyway).
A day or two after the whole body scan, I got a call from my doctor telling me that I may have thyroid cancer again. (Grrr….) There is an uptick in thyroid something. I’d have to look up the test results they sent me. The plan is to continue with the thyroid ultrasound and then another biopsy. If that comes back positive, then I’m back under the knife. I’ve already decided that I want a different surgeon, and that I’m not doing that radiation treatment again. If it didn’t work the first time, fuck this.
On morning Friday, I got a phone call from my doctor. She told me that the biopsy concluded that it wasn’t cancer. Instead, what I had was a reactive lymph node. When I asked her what that meant, she said that my body was fighting off an infection. Sure, I thought, but I’ve heard similar remarks before.
The pain from the biopsy should go away soon, and can take up to a week.
After the call ended, I texted my husband and called my mother with the news. Both were happy. Later that night, we bought a frozen cake and had a beer to celebrate.
But still, I’m leery. I will hope for the best though.
I would like to thank several kind folks who told me about their thyroid cancer experience on Facebook last year or so. Knowing what was going to/could happen made this experience a lot less scary. Thank you.
There are benign-appearing lymph nodes within the right neck. Within the inferior left neck is a 3 x 3 x 2 mm hypoechoic nodule. Previously, it measured 4 x 3 x 3 mm in size. Within the superior left neck adjacent to the submandibular gland is a 2.4 x 0.9 x 1.0 cm lymph node. It does not demonstrate an internal echogenic fatty hilum though is ovoid in appearance. It compares with 2.1 x 0.7 x 1.0 cm in size.
Nervous. That’s how I feel. I was hoping that I would be done with this thyroid cancer stuff. I thought that after the radiation iodine treatment and body scan, no more cancer could possibly be in my body. But after the last ultrasound came a phone call from one of my doctors to tell me that a lymph node has been growing. Because of that, I needed to have a biopsy done.
Arriving in the ultrasound room, I stayed in my clothes and laid on the bed. The ultrasound tech stomped on the foot lever several times to raise the bed so that she could find the spot to biopsy. (Why the hell she couldn’t have raised the table earlier, I have no idea). She pressed that ultrasound wand hard into my throat. (I don’t think this woman had any bedside manner). She found the growing lymph node and called in the doctor and the gal who brought in the glass slides for the cells.
Unlike the last biopsy where six needles gathered the cells, this time the doctor injected some muscle numbing agent. He went in deep and jabbed it around many times. That hurt. He did that with two different needles.
He waited for a minute or two for the numbing stuff to take affect and then dove in with the other needles to collect the cells from the lymph node. Although the numbing stuff was working, he went deep so there still was pain and pressure. I swallowed a couple of times; I guess you’re not supposed to swallow, but that’s hard to avoid when someone’s pressing on your throat like that.
Once he was done and the cells were on the glass slides, he and the slide gal left to make sure that the doctor had collected enough cells. If he didn’t, he’d be back to jab me again.
After five minutes or so, he was back to tell me that they collected enough. Thank goodness. I quickly gathered my jacket and things and took off as fast as I could go. I didn’t even stay long enough to ask when I would have the results. I figured that I’d have them in a week anyway.
I’m hoping for non-cancer, of course. I’ll keep you updated with the results. I’ll celebrate with cheesecake, if it’s not cancer. If it is, I’m having a beer.
Oh, and I think that I’m going to be sore for a couple of days from the harshness of the ultrasound wand and all the needles. On the way home, I stopped at a grocery store and picked up a bag of dark chocolate Reese mini’s. After that adventure, I deserved these yum-yums.
Once your thyroid has been removed, you’ll be seeing an endocrinologist for the rest of your life, starting at three times to twice a year. Before you go, you’ll visit a lab* a week or two before and have your blood drawn to make sure that you’re at the correct dose for your thyroid medicine. I believe that for the first two-five years, the dose will be high to help suppress any thyroid cells growing back into your thyroid (or cancerous thyroid).
The high dose can make you anxious, cause you to sleep less (as if you can get a full-night’s sleep when you have work and/or have a family), and make your period a bit abnormal. All of these side effects do wear off after awhile.
I’ve had my own dose change twice now. If you get your dose changes, don’t throw the previous bottle away. The doctor might have you switch back at some point. I’d suggest tucking it into your overnight bag so that if you go on a spontaneous trip, you’ll have your medicine with you. Don’t worry though, if you miss a day, you probably won’t notice it much, since your body has that large dose already.
Also, you’ll be having ultra sounds done at least twice a year too, to make sure that nothing bad is growing. Here is the result of my first ultra sound after surgery to remove not only my thyroid, but also a egg-sized tumor
There is a small nodule in the left thyroid bed, which may be residual thyroid tissue or less likely, thyroid cancer. The radioactive iodine should treat this area in the neck.
We will follow-up with the whole body scan as planned and thyroglobulin levels with this test. Also plan to repeat neck ultrasound in 3-4 months for follow-up.
Since I’ve been told that my thyroid seemed normal before (and it wasn’t), this note does not assure me.
So, having good health care is key, because this get expensive. 🙁 But even then, there is still a co-pay, out-of-pocket stuff, and etc. Crowd-funding sites, such as gofundme will probably be helpful here.
Anyway, after your first appointment with your doctor after your cancerous thyroid was removed, the doctor will tell you if she/he wants you to do a radiation iodine treatment. This treatment consists of eating non-iodine food for two weeks and then taking a radiation active iodine pill, that will hopefully kill any remaining thyroid cells left. Then, for three days, no one should be around you, including your pets. There are some jerks who don’t care about anyone else and who go shopping after they have taken the pill, possibly infecting others with radiation. (Don’t be an asshole like them). But the good news is that you can eat normally again! Bad news is that you probably won’t taste anything for about a month. Yep, I wasn’t told the last part.
Yes, this is going to suck. I’m not telling you this to scare you, but so that you are prepared and aren’t scared if this happens to you. I highly suggest making the iodine-free food a few days before you go in for your treatment. Because if your partner is a horrible cook, you won’t fully starve. I highly recommend that you download this free low-iodine cookbook at http://thyca.org/pap-fol/lowiodinediet/ and read it a couple of weeks before your big adventure. It’s helpful. And then you can shop for the low iodine food too. I found several things at a couple of large, chain grocery stores. Don’t buy in bulk though as once your three days are up, you’ll probably toss all of it because of your radiation hand prints. Better safe than sorry.
I think that I lost 10-15 lbs during the two-weeks that I was on this special diet. I believe that I mostly survived on sunflower butter and bread that I made a couple of days before. I don’t dare eating my husband’s cooking, and I didn’t think of making the food ahead of time. Learn from my mistake.
Now, let me tell you about the day that I went into the hospital to take the radiation iodine pill. The health care professional wore a lead apron and gloves. She brought a metal locked box into the room. She opened it to reveal two metal pill containers. Both had the unnerving Caution Radioactive Material sticker on them. She carefully opened them and gave me ten pills. I was surprised and told her that I thought that it would be one pill. She replied, yes, that is what they tell everyone, but you get all these. When she gave me a tiny bottle of water, I laughed and told her that I was going to need more. All these pills and only one tiny bottle? That ain’t going to happen.
After I swallowed down the big pills, I was told not to eat for an hour afterwards. It’s best to rest, so that the pills have time to do their job and not be thrown up. I didn’t have any issues with nausea or anything. Yay.
Be sure to have some hard candy on hand, as you’ll need to start sucking on these after you take the radiation iodine pill. One side effect from this treatment is that your saliva glands can clog up. I don’t think that I noticed this until the next day. It was painful to eat fruit, the lemon candy, or pretty much anything. You’ll start feeling it in your lower jaw. It’ll feel like fifty needles jabbing into your jaw there. You’ll just have to power through it. (Hopefully, you don’t experience this, but I did). This pain lasted for a few days to a week or so. I didn’t realize that I lost my sense of taste until a few days after. Drink lots of water too.
I used disposable everything, and after the three days were up, tossed it all in the trash. The bedding I washed and didn’t allow anyone near the bed for a week. I’m sure that my husband enjoyed having our bed to himself during that time.
I would suggest having friends or family watch the kids for a week, so your radiation doesn’t harm the kiddos. If the pets can room the house except for your area, that’s great. Otherwise, pet hotels are great, but can get costly.
Once you get past this, the worse is over. Well, unless you’re like me, and the doctor found a growing lymph node. Yep, I’ll be going back for a biopsy soon. I’ll keep you updated.
But I’d say that most of the time, you’ll be fine. You probably don’t have my luck.
A quick thing about the doctor’s note above. You’ll see that I had to do a whole body scan. I had forgotten about that until I went through all my test results. I don’t remember much about it as there wasn’t much to it. From the doctor’s note, I ingested 2.4 mCi I-123; I don’t remember if that was liquid or a pill, but I’m going to guess liquid. I did that the day before coming in for the body scan the next day. The results were good, “FINDINGS: 24-hour uptake is 1.1% in the region of the neck, equivalent to background levels.” You’ll want something like this too.
So, yay, great news, right? I think that for most people who will be going on their thyroid cancer journey, their adventure, besides the multiple ultrasounds and dose changes, ends right there. But we’ll continue on for a bit with me.
*The best time to go to the lab is right when they open, so that you can be in and out. Great for those who live very busy lives.
During the first month or so after having thyroid cancer surgery, my whole body felt very tired. This tiredness is normal and is because the body is healing from major surgery. I’d go to bed early at times, and once in awhile, I probably took a nap during the day.
I can’t remember if my throat was sore, but I remember that I had to talk a lot a few days after surgery. My mother was having cancer treatments of her own, and there were issues with various things that I had to help her with. It did hurt to talk. Unfortunately, with all the phone calls to her, her doctors, and etc, it took me nearly six months for my voice to return to normal.
Now during this month or so, my voice was scratchy and sometimes it was a whisper. I couldn’t talk any longer than a sentence or two before I totally lost my voice. Talking with also tiring. I’d have to catch my breath.
Speaking of breath, there was one time at night that I woke up feeling like I couldn’t breathe. It was scary. I’d be gasping for air. Of course, this scared the hell out of my husband. This attack happened at least a couple times or so, but during the day too. The best way to handle it is to stay calm and force yourself to breath deep. It’ll be hard during the gasping fits, but you’ll come of it. (I should say that this might not happen to you. This is what happened to me).
The incision scar hurt. It was red and puffy. The stitches were biodegradable, so they didn’t need to be pulled out. I swear that a couple of threads stuck out for some months after that. I was warned that this could happen. I was told to rub, squeeze, and roll the scar after the tape was removed. I think that the tape was removed after a couple of weeks at the doctor’s office.
Oh, and for those who like to use scar healing cream – don’t use scar healing cream on this scar. Supposedly, it will cause more harm than good. I’ve talked with several women who’ve gone through having their thyroid removed, and after a year or so, you can’t even see their scar.
I should mention that if you don’t wear a scarf or turtle necks, those who have undergone any type of thyroid surgery will come up to you to share their experiences. It is nice to know that you aren’t alone. It’s also a great conversation starter at parties.
Stranger: “How did you get that scar?”
Me: “Oh, this? Got it in a bar fight.”
Yes, I actually started replying that way. Hey, you might as well have some fun from it.
Now, if you don’t want the scar to be pink forever, you’ll have to cover it with fabric or sunscreen when you’re outdoors for the first year. Honestly, I haven’t done a great job at this. It’s been over a year and my scar is pink. But it is definitely better than it was the first few months.
During this month too, you’ll get the results from your removed thyroid. Yes, after surgery your removed flesh is taken in for samples to make sure that all the cancer was removed and other joyful things. I found out that besides the egg-sized tumor and cancerous thyroid, that my thyroid was dying. Yep, I had Hashimoto’s Thyroiditis. From my high metabolism, I never would have guessed.
Before the surgery, I weighed 113 lbs. As of today, I’m 130 lbs. When you loose your thyroid, you have to really manage your diet and lifestyle, otherwise you’ll gain weight quick and it’s hard to lose. I’ve given up soda, nearly everything with corn syrup, and candy. I lowered my alcohol intake from a beer or a glass of wine each night to one beer a week. Of course, if I see a doughnut or cupcake I’m going eat it. I admit that my will-power sucks. But I am trying to eat healthier. As for exercise…well, this is something that I still need to work on too. So, don’t feel bad if your diet isn’t the healthiest and that your exercise routine needs adjustment too. Just love the fact that you’re still alive and you get to still enjoy life. Dead people can’t savor delicious foods or go for family strolls.
One more thing that I’m not sure if many women are told about – once the thyroid is removed and you’re taking thyroid medication, your menstruation cycle will be a little off for a couple of months or so. And this happens again when the dose is increased or decreased. There were times where I’d have my period twice in a month. And another where I was spotting nearly every day except for a week break. I suggest buying organic pads/tampons or buying reusable hygiene products. (I found out that the mass produced hygiene products have chemicals that may cause cancer. Having been through cancer, pre-cancer, and abnormal cells, I’m not taking that chance).
Next time – the bi-yearly ultrasound, thyroid medicine adjustment, and the radiation iodine treatment.