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May 31, 2007 7:46 PM Subscribe
How can I avoid both thyroid cancer and the medical-industrial complex?
A couple of years ago, I was diagnosed with Hashimoto's disease (a form of hypothyroidism) and put on Synthroid, artificial thyroid hormone. The doctor (who is not an endocrine specialist) advised me to have an ultrasound scan "just in case." (Standard cover-your-ass advice.) I have been putting it off ever since, because I feel fine otherwise.
Should I have this scan? I am am afraid both of cancer and of a false positive, with a lot of anguish and wasted money.
I exercise a lot, eat healthfully, and have not experienced a serious slowdown or weight gain. The Synthroid does has an effect, as I found when I slipped up and did not take it exactly as prescribed, in the morning, an hour before eating. When I slipped up, I could count on feeling hung over for the next few days. Synthroid also gives me fairly bad insomnia during the week before my menstrual period. A minor symptom of Hashimoto's is that my hair is going grey (I am 36).
I am presently unemployed, having spent the last several years writing a book which is about to be published by a prestigious academic press, though it is a long shot whether I will make any money. I have been holding part-time jobs which have just covered the costs of my insurance and yearly physicals and bloodwork. I am now looking for work, especially work with decent medical benefits. I don't expect to be hired as a professor, as I am not a good teacher. My most practical plan is paralegal work and law school.
If I find (now) that I have cancer, and as I am without savings, except several thousand $ in stocks, my parents would have to pay for cancer treatment. They are well-off but are beginning to have their own health problems. I feel guilty just thinking about this.
An old friend is highly active in the thyroid cancer patient community and is giving me some part-time work -- unfortunately, transcribing medical conference notes. Reading about the complications is making me freak out. I have always been afraid of disease and death. I need the money and her recommendations, so I can't tell her that I won't do the transcriptions. How can I chill out and not develop medical students' disease?
A couple of years ago, I was diagnosed with Hashimoto's disease (a form of hypothyroidism) and put on Synthroid, artificial thyroid hormone. The doctor (who is not an endocrine specialist) advised me to have an ultrasound scan "just in case." (Standard cover-your-ass advice.) I have been putting it off ever since, because I feel fine otherwise.
Should I have this scan? I am am afraid both of cancer and of a false positive, with a lot of anguish and wasted money.
I exercise a lot, eat healthfully, and have not experienced a serious slowdown or weight gain. The Synthroid does has an effect, as I found when I slipped up and did not take it exactly as prescribed, in the morning, an hour before eating. When I slipped up, I could count on feeling hung over for the next few days. Synthroid also gives me fairly bad insomnia during the week before my menstrual period. A minor symptom of Hashimoto's is that my hair is going grey (I am 36).
I am presently unemployed, having spent the last several years writing a book which is about to be published by a prestigious academic press, though it is a long shot whether I will make any money. I have been holding part-time jobs which have just covered the costs of my insurance and yearly physicals and bloodwork. I am now looking for work, especially work with decent medical benefits. I don't expect to be hired as a professor, as I am not a good teacher. My most practical plan is paralegal work and law school.
If I find (now) that I have cancer, and as I am without savings, except several thousand $ in stocks, my parents would have to pay for cancer treatment. They are well-off but are beginning to have their own health problems. I feel guilty just thinking about this.
An old friend is highly active in the thyroid cancer patient community and is giving me some part-time work -- unfortunately, transcribing medical conference notes. Reading about the complications is making me freak out. I have always been afraid of disease and death. I need the money and her recommendations, so I can't tell her that I won't do the transcriptions. How can I chill out and not develop medical students' disease?
I could have written this myself about 10 years ago -- in the situation of having thyroid problems that might have been cancer, without insurance, without savings, and facing the possibility of asking my parents to raid their own savings/retirement if it turned out that I had it (which, in fact, I did). I was also initially (mis)diagnosed with Hashimoto's disease, put on synthroid, etc. Follow-ups with various scans and fine-needle aspirations also failed to pinpoint the cancer (I didn't get any false negatives or positives -- my results were just perpetually inconclusive).
Finally, after several years of illness and an expanding tumor (and boy, they get fun when they start getting in the way of being able to swallow!), I was able to secure insurance, and then finally got a surgical biopsy that led to my cancer diagnosis. I had a full thyroidectomy a few weeks later, followed by I-131 radiation, and follow-ups annually (now semiannually). As I said, I've been in remission ever since.
The number one way to chill out about the possibility of this particular type of cancer is to realize that it's a very slow-moving one (by some estimates, I probably had it for at least 5 years by the time I was finally treated), with pretty much the highest cure rate of all cancers. Most medical professionals won't even blink when you say the words "thyroid cancer." It's very treatable and the post-treatment management has been relatively easy (I have other more serious chronic conditions that have complicated things for me, but in the interests of keeping your nerves calm, I won't go into them!). Believe me, I have other friends who've gone through cancer treatment and follow-up, and I can say that I have had it easy.
Email's in profile if you'd like to contact me. (It may be a few days before I can respond, though -- on crazy deadlines at work these days. But do feel free to contact me if you'd like.)
posted by scody at 8:12 PM on May 31, 2007 [1 favorite]
Finally, after several years of illness and an expanding tumor (and boy, they get fun when they start getting in the way of being able to swallow!), I was able to secure insurance, and then finally got a surgical biopsy that led to my cancer diagnosis. I had a full thyroidectomy a few weeks later, followed by I-131 radiation, and follow-ups annually (now semiannually). As I said, I've been in remission ever since.
The number one way to chill out about the possibility of this particular type of cancer is to realize that it's a very slow-moving one (by some estimates, I probably had it for at least 5 years by the time I was finally treated), with pretty much the highest cure rate of all cancers. Most medical professionals won't even blink when you say the words "thyroid cancer." It's very treatable and the post-treatment management has been relatively easy (I have other more serious chronic conditions that have complicated things for me, but in the interests of keeping your nerves calm, I won't go into them!). Believe me, I have other friends who've gone through cancer treatment and follow-up, and I can say that I have had it easy.
Email's in profile if you'd like to contact me. (It may be a few days before I can respond, though -- on crazy deadlines at work these days. But do feel free to contact me if you'd like.)
posted by scody at 8:12 PM on May 31, 2007 [1 favorite]
sorry, for "semiannually," read "biannually." My full-body scans are now every two years, not twice a year.
posted by scody at 8:19 PM on May 31, 2007
posted by scody at 8:19 PM on May 31, 2007
If there is something wrong, it will not go away from you ignoring it. Scans are part of the general schedule of tests with thyroid disease.
I have Hashimoto's so I know what sort of irritating physical side effects associated with it-- and they always seem so, well, lame. Why bother getting any of these fancy tests if I feel okay? That isn't the best way to look at it, though. It is much better to have an idea of what is happening with your body.
Go to a reputable imaging practice and you should not have any issues with false positives.
posted by oflinkey at 8:21 PM on May 31, 2007
I have Hashimoto's so I know what sort of irritating physical side effects associated with it-- and they always seem so, well, lame. Why bother getting any of these fancy tests if I feel okay? That isn't the best way to look at it, though. It is much better to have an idea of what is happening with your body.
Go to a reputable imaging practice and you should not have any issues with false positives.
posted by oflinkey at 8:21 PM on May 31, 2007
My thyroid was removed seven years ago. I've been clean of thyroid cancer since January 2001. Let me nth Scody's recollections of the disease: I had a biopsy in 1991 and then again in 2000 before my surgery. Nine years for anything to develop in the human body is a really long time. The thyroidectomy and radiation treatments are no fun at all, but it's rarely fatal. From what I remember, mainly elderly people died from it.
Get the scan. And let us know what the results are. I'm pulling for you.
posted by princesspathos at 8:23 PM on May 31, 2007
Get the scan. And let us know what the results are. I'm pulling for you.
posted by princesspathos at 8:23 PM on May 31, 2007
Have the scan. Your health is priceless. There are three main outcomes:
1. Scan comes out negative. You'll feel good and finally have piece of mind. This is a mild Win.
2. Scan comes out positive. Catching cancer early is the best thing you can possibly do. This is a major Win.
3. Scan is a false positive. This is stressful for you, but it won't take long for a proper diagnosis to confirm or deny, so you chill out during that time. This is a mild Lose.
Getting the test seems to be a no-brainer. But as for the money, if you're worried, perhaps you should sign up for medical insurance before getting the test done, with the expectation of downgrading it later if the test is fine. But read the fine-print - some coverage defines "pre-existing condition" as a condition diagnoses within X days after signing up.
posted by -harlequin- at 8:25 PM on May 31, 2007
1. Scan comes out negative. You'll feel good and finally have piece of mind. This is a mild Win.
2. Scan comes out positive. Catching cancer early is the best thing you can possibly do. This is a major Win.
3. Scan is a false positive. This is stressful for you, but it won't take long for a proper diagnosis to confirm or deny, so you chill out during that time. This is a mild Lose.
Getting the test seems to be a no-brainer. But as for the money, if you're worried, perhaps you should sign up for medical insurance before getting the test done, with the expectation of downgrading it later if the test is fine. But read the fine-print - some coverage defines "pre-existing condition" as a condition diagnoses within X days after signing up.
posted by -harlequin- at 8:25 PM on May 31, 2007
I second GaelFC. I have Hashimoto's, as does my father and uncle, and I have been fine on Synthroid and various generics for over 13 years. None of us have had thyroid cancer, and I was very throughly checked due to unrelated issues.
I think you are correct that the doctor's suggestion to get the scan was CYA advice. A lot of doctors' advice is not really meant for people paying out of pocket. Is it possible for you to get catastrophic insurance that would defray the cost of major medical problems, should you develop them? If I were you, that would make me feel better about getting the scan.
Unrelated cost-cutting - have you asked your doctor about generic levythyroxine? It is the same as Synthroid and a whole lot cheaper. I think it is one of Wal-Mart's insanely cheap prescriptions.
posted by ilyanassa at 8:27 PM on May 31, 2007
I think you are correct that the doctor's suggestion to get the scan was CYA advice. A lot of doctors' advice is not really meant for people paying out of pocket. Is it possible for you to get catastrophic insurance that would defray the cost of major medical problems, should you develop them? If I were you, that would make me feel better about getting the scan.
Unrelated cost-cutting - have you asked your doctor about generic levythyroxine? It is the same as Synthroid and a whole lot cheaper. I think it is one of Wal-Mart's insanely cheap prescriptions.
posted by ilyanassa at 8:27 PM on May 31, 2007
Having a scan is standard procedure when the doctor suspects a thyroid problem. He doesn't necessarily suspect cancer. He wants to check the size and function of your thyroid.
I don't know where you're located, but in many states, a diagnosis of cancer will get you Medicaid coverage immediately if you qualify financially. Contact your county health department for information. You can also talk to your doctor/hospital about a sliding payment scale.
IF, and that's a big "if". you do have cancer, as mentioned above thyroid cancer is one of the easiest types to treat. But it's best to catch it early. Good luck.
posted by Oriole Adams at 8:36 PM on May 31, 2007
I don't know where you're located, but in many states, a diagnosis of cancer will get you Medicaid coverage immediately if you qualify financially. Contact your county health department for information. You can also talk to your doctor/hospital about a sliding payment scale.
IF, and that's a big "if". you do have cancer, as mentioned above thyroid cancer is one of the easiest types to treat. But it's best to catch it early. Good luck.
posted by Oriole Adams at 8:36 PM on May 31, 2007
Get the scan -- odds are good you'll be cleared, or your doc will just want to monitor you every year or so. If they find nodules they want to biopsy, you can still say no at that point, if you want to. I had a fine needle aspiration about 8 years ago; my new endo wanted to do another biopsy on me a year ago, but I asked if we could hold off. So instead I had another scan 6 months after that one, and all my nodules had shrunk. No biopsy for me, and I'm now a year between scans.
On the flipside, my mother had Hashimoto's and was undertreated for years. She never had cancer (thank God) but she ended up having to have her thyroid removed. It was fully calcified and they had to cut her wide open. If it had been treated better and earlier (including more ultrasounds) she might have avoided the thyroidectomy entirely, or at least her incision would have been smaller and her complications fewer.
Just going in for one scan does not mean you're signing on for the whole treatment. Also, if the worst happens and it is cancer, remember that there are many sources of assistance for cancer patients. Chances are very good you won't even need a biopsy, and if you do, chances are still quite good that it won't be cancer. But because this is already stressing you out, know that you probably wouldn't have to hit up your parents for payment. The American Cancer Society's phone lines answer questions about this sort of thing all the time, and help people find the right resources for them.
posted by katemonster at 10:03 PM on May 31, 2007
On the flipside, my mother had Hashimoto's and was undertreated for years. She never had cancer (thank God) but she ended up having to have her thyroid removed. It was fully calcified and they had to cut her wide open. If it had been treated better and earlier (including more ultrasounds) she might have avoided the thyroidectomy entirely, or at least her incision would have been smaller and her complications fewer.
Just going in for one scan does not mean you're signing on for the whole treatment. Also, if the worst happens and it is cancer, remember that there are many sources of assistance for cancer patients. Chances are very good you won't even need a biopsy, and if you do, chances are still quite good that it won't be cancer. But because this is already stressing you out, know that you probably wouldn't have to hit up your parents for payment. The American Cancer Society's phone lines answer questions about this sort of thing all the time, and help people find the right resources for them.
posted by katemonster at 10:03 PM on May 31, 2007
If there is something wrong, it will not go away from you ignoring it.
This is the money quote here. If it is cancer and you ignore it, you're giving the tumor that much more time to metastasize and spread. Needless to say, this is not something you want to happen. Get thee hence to the doctor.
posted by chrisamiller at 10:22 PM on May 31, 2007
This is the money quote here. If it is cancer and you ignore it, you're giving the tumor that much more time to metastasize and spread. Needless to say, this is not something you want to happen. Get thee hence to the doctor.
posted by chrisamiller at 10:22 PM on May 31, 2007
Could you get a job with health insurance before you get the scan?
posted by electroboy at 10:48 PM on May 31, 2007
posted by electroboy at 10:48 PM on May 31, 2007
I am now looking for work, especially work with decent medical benefits.
If you have medical benefits coming soon, you might as well wait a few months to get the scan. If you have any symptioms of cancer turn up, get it right away. You won't not have cancer just because you didn't know you had cancer. You can probably qualify for some sort of help with the bills, and even if your parents need to spend their savings, they would probably prefer that to you being dead.
Wait a minute ... re-reading your post, I see that you have insurance. Get the scan already. Quit worrying that you might feel bad if your parents spend their money keeping you alive -- you can take care of them in their old age to repay the favor.
posted by yohko at 1:21 AM on June 1, 2007
If you have medical benefits coming soon, you might as well wait a few months to get the scan. If you have any symptioms of cancer turn up, get it right away. You won't not have cancer just because you didn't know you had cancer. You can probably qualify for some sort of help with the bills, and even if your parents need to spend their savings, they would probably prefer that to you being dead.
Wait a minute ... re-reading your post, I see that you have insurance. Get the scan already. Quit worrying that you might feel bad if your parents spend their money keeping you alive -- you can take care of them in their old age to repay the favor.
posted by yohko at 1:21 AM on June 1, 2007
one other thought on insurance
Even if you have 80/20 insurance with a high deductible, get the scan already. Why are you even paying for insurance if you don't want to use it for anything?
posted by yohko at 1:23 AM on June 1, 2007
Even if you have 80/20 insurance with a high deductible, get the scan already. Why are you even paying for insurance if you don't want to use it for anything?
posted by yohko at 1:23 AM on June 1, 2007
Not having the scan wont make you not have cancer if you have it and having the scan wont make you have cancer if you dont.
Chances are, you dont have cancer but getting the scan will confirm it and you can stop worrying about it.
posted by missmagenta at 1:55 AM on June 1, 2007
Chances are, you dont have cancer but getting the scan will confirm it and you can stop worrying about it.
posted by missmagenta at 1:55 AM on June 1, 2007
yeah, get it over with! think about it this way, if you do have cancer, it'll only be *more* expensive to treat if you wait to let it spread.
posted by thinkingwoman at 6:37 AM on June 1, 2007
posted by thinkingwoman at 6:37 AM on June 1, 2007
Chiming back in to say, too, that until you get the scan (which I'm hoping you're now convinced to do), please remember in the meantime that the vast, vast majority of thyroid problems are not caused by cancer, and something like 95% of thyroid nodules (if it turns out that the scan picks up a nodule) are benign. All told, thyroid cancer itself is relatively rare, with only about 12,000 new cases in the U.S. every year. So all this means A) odds are good you probably don't have thyroid cancer in the first place, and B) if you do have it (as I said above and others have reiterated), it's very treatable and survivable.
posted by scody at 4:08 PM on June 1, 2007
posted by scody at 4:08 PM on June 1, 2007
Response by poster: Thank you all for your comments; I plan to make the appointment for the scan (given the lead time for medical appointments in my busy urban area, I may be able to raise the money for the co-payments; I have insurance). As said, I have been feeling well otherwise, and have only noticed a slightly inflamed feeling occasionally, on slipping up on my medication or after eating certain things (soy?). I hate reading about thyroid cancer, though.
posted by bad grammar at 6:32 PM on June 2, 2007
posted by bad grammar at 6:32 PM on June 2, 2007
This thread is closed to new comments.
My doctor told me that 1/3 of the U.S. has UNDIAGNOSED thyroid issues. Not cancer, thyroid issues like Hashimoto's or Graves. With that many people running around with thyroid problems, the odds of yours being cancer and not just everyday thyroid woes seems pretty smallish to me.
I do know one person who had thyroid cancer. He has his thyroid removed and all is well. I say, suck it up and get the scan. Probably you'll be fine, and in the rare instance you're not, you should find out as early as possible. You can live quite fine without your thyroid as long as don't get stuck on the "Lost" island without your medication.
posted by GaelFC at 8:11 PM on May 31, 2007