Do I get Thyroid Removal Surgery?
November 20, 2011 3:40 PM   Subscribe

My girlfriend is confused and bewildered about the possibility of having thyroid removal surgery. Of course there's more to it, so the entire extended explanation is in her words.

For reference, I am a 25yr female in otherwise good health. My mother has had part of her thyroid removed and has been on medication since she was 19.

About 6 months ago (June) I noticed that there was a swollen bump at the base of my neck. After poking at it for about a week, I decided it wasn't going away, so I went to the local clinic. The doctor there poked at it as well, asked me a bunch of questions, and then sent me for an ultrasound and blood test for my thyroid. It took about two weeks to get the appointment, and then another week to get the results back in. My blood test came back completely clean, but there were several swollen nodules on both sides of my thyroid, and it wasn't clear what they were. The clinic doctor set me up with an appointment with a specialist, which took another few weeks.

When I finally got to the specialist, he basically created a file for me, asked me a few questions, and gave me a requisition form for a fine-needle biopsy. I got a call from another medical centre, and they gave me an appointment to get an ultrasound, and then another one to get the actual biopsy done. The biopsy itself was done August 25th (they only did them once a month), and I got another appointment with the specialist around early September. Between the biopsy and appointment, my thyroid was swollen and very painful. I thought I had gotten an infection. I was given antibiotics and was told to take otc painkillers as needed.

Turns out, the biopsy revealed the my thyroid was hemorrhaging, and the advil I was taking was making the problem worse... which was actually causing it to swell more and give me a massive headache. In case, the specialist recommended that part or all of my thyroid be removed.

He sent me to a surgeon who would make the final decision. My appointment was the 15th of November. When I got there, I had some medical students poke at me, and then the surgeon asked me a couple of questions. He strongly recommended that I have surgery. I didn't have to decide there, but I told him I didn't really want surgery. He told me there was a 5-10% risk of cancer, and that the only way to know (after the partially inconclusive biopsy) was to remove it. He gave me a requisition for another ultrasound to have done around April, and told me that if anything changed between the old ultrasound (Aug) and the one I would have then, it should really be removed.

Now, originally I did not want surgery at all, but now I do not know what to do. I certainly do not want potentially unnecessary surgery, but I am worried that my giving it time (to get the ultrasound) will potentially mean cancer that has advanced another 5 months. So I am left with these questions/situations:

Do I.....

-wait until April and maybe find something wrong and have surgery around my birthday?

-call him up now and have surgery in February and possibly be on medication for the rest of my life?

-wait until April, find nothing wrong and wonder about it until the next ultrasound?

-wait until April, find nothing wrong, and never have a problem with it again?
posted by Imperfect to Health & Fitness (26 answers total)
I suggest doing it. Several women in my family have had to have theirs removed. My sister was the last one. Hers turned out to be cancerous. It will continue to give you problems until you remove it. But then again, I am not your doc, just some gal on the internet.
posted by nimsey lou at 3:54 PM on November 20, 2011 [1 favorite]

Unnecessary surgery sucks. On the other hand, managing with synthetic medicines in lieu of a natural thyroid is a lot less sucky than cancer. And you know for a fact that your thyroid is swollen and generally not functioning properly; you also know that you have a family history of thyroid problems.

I would suggest that you may not want surgery, but nobody really wants surgery. Metafilter is really not well-equipped to provide serious medical advice. I suggest instead of listening to us per se, you listen to the medical professionals you've spoken to.

(I'm saying this as the ex-boyfriend of a woman who had a thyroidectomy a couple of years before we met, and had gotten quite comfortable with her vitamin/medication regimen by that point. She would tell nosy people that her scar was the result of messing around with live swords in a martial arts class, and enjoy the look on their faces while they processed this.)
posted by Tomorrowful at 3:55 PM on November 20, 2011 [2 favorites]

I don't know Ontario well, but it looks like Kingston is a fairly small city. Do you have access to really good hospitals? When you spoke with the surgeon, did you go to a local hospital or did you drive up to Montreal? I am not a medical professional of any sort, but I'm good friends with a surgeon, and we talk medicine a lot. One of the strong impressions I have, both from conversations with my friend, and from exposure to a variety of medical services, is that there's a big range of qualities of service depending on the institution. (My friend works for the Cleveland Clinic, and both my wife and I have had surgeries there, and damn do they ever have their act together.) All that to say: you might consider getting a second opinion.
posted by jon1270 at 4:05 PM on November 20, 2011 [1 favorite]

You probably want to talk to people who've "been there," which means, I'm thinking, the Thyroid Foundation of Canada (their help line is 1-800-267-8822.) You might also see if there's a social worker or counselor affiliated with your surgeon's office, who can review your options with you.
posted by SMPA at 4:08 PM on November 20, 2011 [3 favorites]

He strongly recommended that I have surgery.


He told me there was a 5-10% risk of cancer, and that the only way to know (after the partially inconclusive biopsy) was to remove it.

Seems like your thyroid is a bit of a liability for you. Just take the fucker out.

You may be on synthroid...but you won't have cancer.

Don't wait till April, just get it done asap and be done with it.

Good luck, and update the thread with what happened so someone else can find out what you recommend AFTER it all works out.
posted by hal_c_on at 4:16 PM on November 20, 2011 [1 favorite]

Did you ask your doctor what a 5-month delay would mean if it did turn out to be cancerous? This seems to be a key bit of information. I'm no doctor, but I would tend to take the surgeon's acknowledgment that you can wait until April as permission to do just that. But I'd follow up to be sure, in no uncertain terms, that you're not seriously increasing your risk of a bad prognosis by waiting.
posted by dixiecupdrinking at 4:18 PM on November 20, 2011

For what it is worth, while no surgery is fun, thyroid is generally not that bad as surgeries go (my mom had this done a few years back). As far as I can tell, living with a malfunctioning thyroid is unpleasant, and do you really want to mess around with a 5-10% risk of cancer?

However, you probably want a second opinion -- call that Thyroid Foundation and ask them for the names of other specialists in your area. See if you can get in to see one of them and see what they say, especially if they won't be the ones doing the surgery.

When it comes to medical cries, I remind myself that the only way out is through. It's not like the magic health ponies are going to come and put things back the way they were -- you need to get yourself together (with the help of family and friends) and deal with the situation in which you find yourself.

All that being said, sooner is probably better than later, but get that second opinion.
posted by GenjiandProust at 4:19 PM on November 20, 2011 [1 favorite]

My sister had it done, and she said that her advice is to get it done ASAP. Get a second opinion as well, if it will help you with the decision.
posted by bolognius maximus at 4:20 PM on November 20, 2011

I had thyroid cancer and had a total thyroidectomy. I actually feel a lot better on the synthetic thyroid hormones than I ever did before the surgery. My strong recommendation, though, is to find a surgeon who pretty much does thyroidectomies all day long. It's a potentially tricky bit of surgery and if they nick your parathyroid then you could have real problems. Find a top endocrinologist in a major population center, and ask them to recommend a surgeon. That's what I did and was very happy with my treatment. Bonus, you can hardly even see my scar.
posted by HotToddy at 4:29 PM on November 20, 2011 [2 favorites]

Your post left me with the impression that you don't have a ton of confidence in the doctors you have seen so far. For that reason alone, get a second opinion before having surgery! Whether or not they agree that it needs to be removed, I think you will get a lot of peace of mind from having a second doctor review your case. Good Luck!
posted by bahama mama at 5:10 PM on November 20, 2011

I had two thyroid surgeries in my 20s (first a lumpectomy to determine if it was cancer, then a complete thyroidectomy once it was confirmed that it was, indeed, cancer). Altogether I healed pretty quickly (both hospital stays were only a couple of days, and then I recovered at home for another few weeks) and, once I got through radioactive iodine treatment (which just makes you feel under the weather for awhile), quickly resumed life pretty much as normal.

Being on daily thyroid hormone is also not a big deal, though it can sometimes take some time to calibrate the right dosage; you just put it next to your toothbrush, take it once in the morning, and you're done dealing with it for the day. All told, as far as medical procedures and treatments go, it's a relatively easy one to deal with.

That said, I do agree that it's fine to want to get a second opinion (definitely seek out a good endocrinologist who knows thyroids, as well as a specialist surgeon, if you can). Ask your doctor what they think about a 5-month delay, if that's what it would come down to, in seeking treatment. Generally speaking -- and please note IANAD, just someone who dealt with this at a similar age -- thyroid cancer tends to be fairly slow-moving. Back when I had it, I actually wound up waiting (with my doctor's full awareness/supervision) for more than a year from the point at which we suspected I had cancer till I actually got the surgery, because I had to wait to get health insurance first in order to afford it. Again, IANAD, and any sort of cancer most certainly should be taken seriously, but when it's a question of thyroid cancer, I do think you have the luxury of taking a little more time to consider your options than you would with other forms of cancer.
posted by scody at 5:13 PM on November 20, 2011 [1 favorite]

Ditto what HotToddy said. I had my thyroid out due to cancer at 26, and I am eternally grateful that my surgery was done by one of the top head/neck surgeons in my region--she took the whole thing out, did a great job, and my only complaint about the whole experience had to do with the treatment of the actual cancer, not the thyroidectomy itself. My scar is practically nonexistent.

Living without a thyroid is not a big deal at all. I get my blood drawn a few times a year and take a pill once a day. The generic is a $4 affair at most pharmacies. I won't go so far as to say that thyroid cancer is not a big deal--Roger Ebert is an example of what happens when it IS a big deal--but the loss of a thyroid gland is so easily managed, I'd just go with the surgery.

I wouldn't go completely insane while waiting a few months for surgery. I had an inconclusive biopsy, was scheduled for surgery several months later, and when they finally took out my thyroid they found 6 egg sized tumors hiding behind the gland that had been slowly growing for years, and I'm still here 10 years later to talk about it. Ironically, the palpable tumors IN the gland were benign.

Make a list of questions. Talk to your doctor. Bring an extra pair of ears with you to help you listen and understand your situation better. Be assertive. Don't panic.
posted by xyzzy at 5:15 PM on November 20, 2011

In my experience, surgeons always strongly recommend surgery. The fact that he has allowed you the option to wait until April to see what's up would seem to imply that surgery is not urgent.

However, this is Canada, and you're going to have a wait, right? My advice is to call him up now and get the surgery date for February. Having a surgery date doesn't mean you have to have the surgery. It just means you have a spot booked for yourself. Then you can take the time between now and then to consider your options.

Again: you can cancel any time up until they wheel you into the operating room, so booking the surgery now does not obligate you to go through with it.

I had surgery a year ago, and got the surgery date six months before that. I hadn't been expecting to get a surgery date so quickly (at my first appointment) so I asked flat out if I could change my mind later and they said what I just wrote there: until they knock you out, you can back out. And in the six months while I waited, they called me three times to say there were cancellations and I could move up my surgery, so clearly people do cancel.

I don't have any advice for whether you should go through with the surgery in February, but I want to encourage you to buy yourself the time to think things through (and consult another surgeon if you'd like) without worrying that thinking will delay the surgery even longer if that's the way you decide to go.
posted by looli at 5:46 PM on November 20, 2011

Oh, and jon1270, Kingston is home to one of the top three medical schools in the country, so the hospital is probably just fine.
posted by looli at 5:52 PM on November 20, 2011

I would not have something as serious as thyroid (partial?) removal done without out at least a second opinion, if not a third.

I will comment that your observation about the students poking you seems odd. Your surgeon must be at a teaching institution. I'd overall consider that a positive, not a negative, in determining an opinion about a physician (but that's about my attitudes about the learning possibilities in instructing). But beyond that, so what? Was there something else about that encounter that made you question their believability?
posted by phearlez at 5:58 PM on November 20, 2011

Imperfect's Girlfriend says:

Thanks for the advice, guys.

A couple of things I want to mention, though.

- I actually live in the GTA, and am going to the Toronto General hospital for the appointments/possible surgery

- Aside from the cosmetic issue (swollen neck) I would have had no idea anything was wrong. You probably know, but signs of a malfunctioning thyroid include gaining/losing weight rapidly, hair loss, fatigue... none of which I am experiencing.

- I didn't ask what the delay would possibly mean... I was hoping I would walk in there and find out that surgery was an option, and I got smacked in the face with medical students and a doctor that didn't seem interested in my case. That being said, I was told he was the guy to go to if I needed this sort of thing.

- scody, you mention that thyroid cancer can be fairly slow moving, but that made me remember that my thyroid swelled a few years ago, but I guess the nodules (if detectable at that time) were fairly small and not enough to worry about.

I will call the Thyroid Foundation and talk to someone about this. Seems like a great plan.
posted by Imperfect at 6:02 PM on November 20, 2011

1. Get a second opinion. Find a thyroid group your area and get other recommendations for good surgeons. You'll feel a LOT better if you can find a surgeon you feel comfortable about.

2. I had thyroid cancer and had no clue except for some swelling in my neck, which in fact may have had nothing to do with the cancer.

3. The surgery is very straightforward and if you do have cancer the follow-up treatment is not nearly as difficult as it is for most other cancers. For me, the biopsy was really more upsetting than the surgery.

4. Most forms of thyca are slow-moving, but not all.

5. Taking synthroid every day for the rest of your life sounds awful when you think of it that way, but at this point it's no more onerous than brushing my teeth every day.

Good luck.
posted by bunderful at 7:38 PM on November 20, 2011

If you are this concerned - get other opinions. Sounds like your biopsy was inconclusive … I would request another.
Regardless whether your thyroid is removed or not – you may have to take medication for the rest of your life. Do your research now – before you are pressured in to making a decision.
I have had a thyroid condition for over 15+ years, with several large nodules. I had a biopsy many years ago – and remember how tender and sore my thyroid area was for months after. I have noticed that my nodules swell closer to my period and are reactive to certain foods. I have not taken medication but have read a lot about controlling nodule swelling through medication. Canada is quite conservative with thyroid testing and medication (I’m in Canada…). I’ve has many of my tests sent to private labs in the states, as labs here restrict what Doctors can test.
Mary Shomon has several books and an active website where she lists Doctors (including Canadian) that other patient recommends. Do your homework!
posted by what's her name at 8:13 PM on November 20, 2011

IANAD and so cannot say which of the 4 choices you listed is wisest, and I reside in the U.S. But I know someone who has had thyroid ultrasounds, fine needle aspirations, and a core biopsy and I gather it can be difficult for a doctor to get a definitive idea of what's going on even with all that. So I (for what it's worth) agree with bunderful's suggestions above. If nothing else you will want to have some sense you're making an informed decision so you don't cringe when they have you sign the forms listing all the possible problems that could occur.
posted by forthright at 8:50 PM on November 20, 2011

I'm always in favor of getting a second opinion, but if it's going to take another six months for you to get through another round of doctor/tests/doctor, that might not be such a good idea. One thing I would consider is that there's nothing normal about a 25-year-old with hemorrhagic thyroid nodules - it's not in the same league as having headaches with your period, for instance. What was the reason for your mother's thyroid surgery? Did she have a malignancy? Surely the doctor who's done your workup is aware of whatever her problem was - has he not explained to you whether he thinks this is a familial problem? Did the biopsy only show hemorrhage? That seems odd to me, but IANAD, so can't say for sure. I can say, for sure, that taking a pill every day for the rest of your life isn't the end of the world. Diabetics, people with seizures and many other young people have to get used to it - it's not a big deal - and it sure beats cancer.

I wouldn't pay much attention to the percentages they give you; in fact, most physicians refuse to give "odds" on malignancy potential at all. I think what you need is a doctor to sit down and go over your situation until you have a much clearer idea of what's happening - first thing.
posted by aryma at 10:13 PM on November 20, 2011

If it were me (and I am coming at this as someone with Hashimoto's thyroiditis and a cancer survivor, albeit not thyroid cancer) I would absolutely have the surgery ASAP. Even though thyroid cancer is typically slow growing, it is better to not take a chance of it being cancer and continuing to grow for an extra five months.

If you aren't comfortable with that, get a second, or even third opinion, although I imagine with two episodes of thyroid swelling, and a biopsy that was inconclusive, most will opt for surgery. Although, we are often see that biopsies diagnosis cancer, there are several types of cancer where the biopsies are often inconclusive, or are not done at all due to the risk of false negatives.

Being on Synthroid, or its generic, is not a big deal, it is one small pill a day that is typically taken in the morning. And, they have actually shown that the generics are fine, so if you read that you must take the name brand, don't believe it. The name brand has actually been shown in studies to have a larger variation in micrograms than the generics.
posted by SuzySmith at 12:30 AM on November 21, 2011

I just wanted to point out that the 4 options you listed are not actually your options.

Calling the surgeon and scheduling surgery for February is an option that is within your control. So is waiting until April to have another ultrasound. Whether you have a problem or not is *not* within your control, so that is not a choice.

If I were you I would consider the worst case scenario (that you have thyroid cancer, and you don't find out until April, and the cancer has become advanced during that time) and see whether you are comfortable with that.

The ultrasound in April may tell you that there may be something wrong, but what it won't tell you is that "there's nothing wrong". The ultrasound will either change, or it won't. If it does change, your surgeon will again strongly recommend surgery (and what if it just changes minimally? Will you feel comfortable with the fact that 'it didn't change much' and still opt not to have surgery?). If it doesn't change, that doesn't mean there's nothing wrong, it just means that your risk-benefit equation is different. In a situation like this, no change is good, but it will not give you a definitive answer, and it will not mean that you 100% do not have cancer or do not need your thyroid removed.

You will only have a definitive answer about whether you have cancer or not by getting an actual pathology specimen that shows cancer (either by biopsy or thyroidectomy), or looking at the entire thyroid in the pathology lab and seeing that there is no cancer (by thyroidectomy). Note that what you need for a definitive "yes" or "no" answer is different.

I agree with your plan to talk to the thyroid organization and also to get a second opinion. But I would like to finally point out that you can always say "I'd rather not see a medical student", but when you go to a teaching institution, they do not purposefully "smack you in the face with medical students", they by protocol try to provide a learning experience for the medical students so that future great doctors and thyroid surgeons can be made. If no patients allowed medical students to see them, your medical resources would suffer.
posted by treehorn+bunny at 9:16 AM on November 21, 2011 [1 favorite]

Hi, I had thyroid surgery when I was fifteen (I'm 32 now, so it's been a while, but I remember everything pretty vividly).

In my case I had what they called a "benign hyperfunctioning nodule". Basically an overgrowth of "extra" thyroid tissue that had started operating independently. I had no physical / subjective symptoms to speak of (other than mild swelling on the front of the neck), but as it turned out, my actual thyroid had essentially shut down and for a while the growth was providing all the thyroid hormones to my body! Which, apparently, isn't likely to be a sustainable situation.

I ended up having surgery both to remove the growth (which entailed removing half the thyroid itself) and determine whether it was malignant. Thankfully it was benign, but the doctors said it was the type of thing that could have eventually *become* cancerous, so I'm really really glad I just had it taken care of when my parents noticed the swelling, rather than waiting years and eventually (probably) becoming very ill.

The surgery experience was, of course, exceedingly annoying. Surgery is never convenient or fun, and I was terrified I'd never wake up from the anesthesia. Obviously I did, though, and I recovered very quickly once it was all over. I still have a very thin scar across the front of my neck but nobody notices it unless I point it out to them, and honestly it's a pretty darn cool place for a scar if you have to have one. (I got to tell my little stepbrother that it was from when aliens abducted me and removed my head for an experiment, etc. That was amusing. :P)

Oh and depending on what exactly your thyroid issue is, you might not even need medication later. I actually did NOT end up needing thyroid pills following my operation -- since the other half of the gland was intact, it just took over functioning for the entire thing. It's a little larger than a single lobe normally is but nothing to prompt medical concern. And all my blood tests have been perfect (I got it checked regularly for over a decade afterward).

So, yeah, you might want to get a second opinion just for the sake of covering your bases. But honestly if there's even a chance you're likely to need surgery *eventually*, as much as it sucks, it's better to get it over with when you're younger and in better physical condition versus waiting until you're older and (potentially) sicker.
posted by aecorwin at 10:59 AM on November 21, 2011 [1 favorite]

I had half my thyroid removed when they discovered a fist-sized goiter in my upper chest, connected to my thyroid. I didn't have thyroid symptoms, but I did have pneumonia so they did a chest x-ray and saw the tumor, which was interesting looking and taking up a lot of room in my upper chest/lower throat area, pushing my esophagus aside. I had to have several tests -- nuclear scan, cat scan, MRI, needle biopsy, etc. The surgery was easy -- stayed overnight in the hospital, although if he'd managed to do my surgery in the morning I could have gone home that night. Soreness for a few days. Scary scar for a while. My surgeon was awesome (the somewhat famous Atul Gawande, actually) and didn't screw up my parathyroids or anything, and now I am fine and don't need pills. I get tested a couple of times a year to make sure my numbers are good, and so far, so good. When they biopsied the mass, there was a very tiny part of it that was cancerous, and the rest was benign, so I didn't need further treatment for that.

I'd recommend getting the second opinion asap, and then following their advice. I'm no fan of unnecessary surgery, but this one might very well be necessary.
posted by clone boulevard at 1:00 PM on November 21, 2011

GF wanted to add the following, I am late on doing so, my apologies:

treehorn+bunny : I didn't mean to imply that the medical students were a bad thing, simply that I was thrown off by their presence. I would have like to have been told that they would be there, or at least given the option beforehand. I would have agreed to have them regardless, but I would have been better prepared to have them if I had known. Every time the surgeon told me something or asked me something, I kept looking over at them. It was distracting.

Also, I have called to get another appointment with the specialist so he can better explain the situation to me.
posted by Imperfect at 8:28 AM on November 22, 2011

Incredibly late follow-up.

She decided to get the surgery. Recovery is going fine.

Thanks for the advice!
posted by Imperfect at 6:14 PM on February 24, 2012

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