What do we need to know about thyroid cancer?
May 5, 2008 10:42 AM Subscribe
My wife was just diagnosed with thyroid cancer, if anyone can share experiences, recommended reading material, or general advice we'd appreciate it.
She's been diagnosed with papillary thyroid cancer which is apparently the most common and for her age and tumor size (39 and 1.5cm) has a very good prognosis. However we are obviously worried and stressed. Her doctor has published a book that we're going through and we've read the first few pages of google results. We're working and gathering as much information as possible before her next appointment so we know what questions to ask.
One big worry for her is having children after her treatment is done. We were actively trying to have a baby, but obviously this will have to be put off for a while. So if anyone knows of someone who had thyroid cancer and then had a child please mention it so I can reassure her.
She's been diagnosed with papillary thyroid cancer which is apparently the most common and for her age and tumor size (39 and 1.5cm) has a very good prognosis. However we are obviously worried and stressed. Her doctor has published a book that we're going through and we've read the first few pages of google results. We're working and gathering as much information as possible before her next appointment so we know what questions to ask.
One big worry for her is having children after her treatment is done. We were actively trying to have a baby, but obviously this will have to be put off for a while. So if anyone knows of someone who had thyroid cancer and then had a child please mention it so I can reassure her.
My partner had pap-thy cancer five years ago. She says she won the cancer lottery - as in if you're going to get cancer, this is the one you want. It's very treatable, you don't have to do the full-out cemo, and the cure rate is as good as you're ever going to see.
So as far as the cancer, it's serious, and needs to be treated, but you don't really need to fear death any more than simple surgery.
As for children, our situation didn't turn out so well - but it probably had more to do with age than the cancer. She was 47 when diagnosed. Had clockwork periods until the iodine cemo. Then instant menopause and hasn't had a period since. (Six years on.)
There are so many details to deal with, and a ridiculously large number of those details weren't covered in any of the many books and experts we talks with. We learned most of it from support groups.
Feel free to meMail me.
posted by ochenk at 11:16 AM on May 5, 2008
So as far as the cancer, it's serious, and needs to be treated, but you don't really need to fear death any more than simple surgery.
As for children, our situation didn't turn out so well - but it probably had more to do with age than the cancer. She was 47 when diagnosed. Had clockwork periods until the iodine cemo. Then instant menopause and hasn't had a period since. (Six years on.)
There are so many details to deal with, and a ridiculously large number of those details weren't covered in any of the many books and experts we talks with. We learned most of it from support groups.
Feel free to meMail me.
posted by ochenk at 11:16 AM on May 5, 2008
I had papillary thyroid cancer at age 39, with a similar tumor size except that mine was multinodal.
ThyCa is the best thyroid cancer support group. Don't get freaked out by what you read there, though--the people who stick around on there are, naturally, the few with continuing problems. Most people, including me, only hang around during their treatment.
I did a ton of research--just absolutely obsessively researched night and day--and the most important thing I concluded was that RAI (radioactive iodine) ablation is overprescribed and can have debilitating side effects, particularly on the salivary glands. My doctors (both considered leaders in the field) were going to have me do it just as a matter of course, but when I started discussing the issue with them in depth, they conceded that it was quite reasonable to skip it in my case. Obviously IANAD, but I would advise doing your own research on this matter.
You're fine to have a baby. I believe they told me you just have to wait 6 months after the RAI, but otherwise there is no concern.
Feel free to MeMail me if you like.
posted by Enroute at 11:30 AM on May 5, 2008
ThyCa is the best thyroid cancer support group. Don't get freaked out by what you read there, though--the people who stick around on there are, naturally, the few with continuing problems. Most people, including me, only hang around during their treatment.
I did a ton of research--just absolutely obsessively researched night and day--and the most important thing I concluded was that RAI (radioactive iodine) ablation is overprescribed and can have debilitating side effects, particularly on the salivary glands. My doctors (both considered leaders in the field) were going to have me do it just as a matter of course, but when I started discussing the issue with them in depth, they conceded that it was quite reasonable to skip it in my case. Obviously IANAD, but I would advise doing your own research on this matter.
You're fine to have a baby. I believe they told me you just have to wait 6 months after the RAI, but otherwise there is no concern.
Feel free to MeMail me if you like.
posted by Enroute at 11:30 AM on May 5, 2008
I had papillary thyroid cancer at 28, and have been in remission for more than a decade. As ochenk says (and as you will hear many times throughout the process), if you have to get cancer, this is the one to get.
Generally speaking, the surgery is short (less than 2 hours) and chemo isn't necessary; she'll probably be in the hospital overnight. A dose of radioactive iodine (I-131) is the usual approach to blast any remaining cancer cells that might be floating around. In the old days, they used to prescribe such high doses of radioiodine that the patient would have to be in isolation for several days or a week. It's become much more common now, though, to give a lower dose, so that patients can go home immediately, and simply follow some basic precautions for a week or so to avoid any cross-contamination (flushing several times after going to the toilet, not sharing plates or utensils, etc.) -- and as enroute says, some docs are even willing to forgo it entirely. (Though of course, talk to your doctors about it.) Basically, between the surgery and any radioiodine, she'll feel under the weather for a few weeks, but should be well on the mend after that.
As has also been mentioned, the only issue with having a child is that you'll have to delay trying to get pregnant till after any radioiodine treatment is finished. The doctors will give you the clear when it's fine. That's really it.
As for life after treatment, it's pretty easy -- thyroid meds every day (note that she will likely be given a slightly hyperthyroid maintenance dose in order to keep her TSH very low, which is what will keeps any stray cancer cells suppressed and thus keep her in remission), and follow-up scans every few years. The scans are slightly tedious -- you have to go on a low-iodine diet for a month or two, and temporarily boost TSH levels quite high, either by withdrawal from thyroid hormone (the old method) or with a couple of doses of Thyrogen (the new method) -- but otherwise totally manageable.
Also, as a bonus, her neck scar can be used as the basis for a Halloween get-up this year. Glue a couple of bolts on either side of it, get a fright wig, and she can be the Bride of Frankenstein -- that's what I did the first year after mine! (The scar has since faded so well that it's practically invisible now.)
I know that any mention of the Big C is upsetting, even when it's the "good" one to have. But this is really one that she (and you!) can get through just fine. I wish you the best.
posted by scody at 12:14 PM on May 5, 2008 [1 favorite]
Generally speaking, the surgery is short (less than 2 hours) and chemo isn't necessary; she'll probably be in the hospital overnight. A dose of radioactive iodine (I-131) is the usual approach to blast any remaining cancer cells that might be floating around. In the old days, they used to prescribe such high doses of radioiodine that the patient would have to be in isolation for several days or a week. It's become much more common now, though, to give a lower dose, so that patients can go home immediately, and simply follow some basic precautions for a week or so to avoid any cross-contamination (flushing several times after going to the toilet, not sharing plates or utensils, etc.) -- and as enroute says, some docs are even willing to forgo it entirely. (Though of course, talk to your doctors about it.) Basically, between the surgery and any radioiodine, she'll feel under the weather for a few weeks, but should be well on the mend after that.
As has also been mentioned, the only issue with having a child is that you'll have to delay trying to get pregnant till after any radioiodine treatment is finished. The doctors will give you the clear when it's fine. That's really it.
As for life after treatment, it's pretty easy -- thyroid meds every day (note that she will likely be given a slightly hyperthyroid maintenance dose in order to keep her TSH very low, which is what will keeps any stray cancer cells suppressed and thus keep her in remission), and follow-up scans every few years. The scans are slightly tedious -- you have to go on a low-iodine diet for a month or two, and temporarily boost TSH levels quite high, either by withdrawal from thyroid hormone (the old method) or with a couple of doses of Thyrogen (the new method) -- but otherwise totally manageable.
Also, as a bonus, her neck scar can be used as the basis for a Halloween get-up this year. Glue a couple of bolts on either side of it, get a fright wig, and she can be the Bride of Frankenstein -- that's what I did the first year after mine! (The scar has since faded so well that it's practically invisible now.)
I know that any mention of the Big C is upsetting, even when it's the "good" one to have. But this is really one that she (and you!) can get through just fine. I wish you the best.
posted by scody at 12:14 PM on May 5, 2008 [1 favorite]
My mom is a thyroid cancer survivor.
First off, let me tell you, she's ok now. She takes drugs to regulate hormones and sometimes things get a little wonky there, but she's fine. She works, she goes on vacations, she walks around, she picks up her grandkids (my kids).
I genuinely hope that you end up able to have all the children you want, and that your wife does as wonderfully as my mom has. Peace be with you.
posted by SlyBevel at 12:41 PM on May 5, 2008
First off, let me tell you, she's ok now. She takes drugs to regulate hormones and sometimes things get a little wonky there, but she's fine. She works, she goes on vacations, she walks around, she picks up her grandkids (my kids).
I genuinely hope that you end up able to have all the children you want, and that your wife does as wonderfully as my mom has. Peace be with you.
posted by SlyBevel at 12:41 PM on May 5, 2008
Oh, and I also meant to say that she should expect to feel unbelievably tired for about two months, at least going by my experience. I remember lying on the sofa, starving to death and only about 15 feet from the refrigerator, but completely unable to get up and get myself a snack. I was so tired it was nauseating, but not in the normal way--very hard to describe. So you should be prepared to help her out a lot during this time.
Then one Tuesday I woke up and felt just dandy, and I've been feeling fine ever since.
All in all, having thyroid cancer was a good experience for me. I had struggled with depression for years, but the problem simply went away after I had my thyroid removed--perhaps I was subclinically hypothyroid before? We don't know. I have more energy and am much more cheerful and resilient now. I learned a lot about which friends and family members can be counted on in a crisis, and although that was a hard lesson, it's good to find out the truth before a real crisis hits. Finally, the experience made me think seriously about my priorities in life. I've made some big changes in my life as a result, and that has contributed to my happiness as well. So, all of this is just to say that although I know you're both probably feeling pretty scared and out of control right now, you may end up looking back on it as one of the most beneficial experiences of your life. I hope you do.
Oh--one more thing, despite all my doctors telling me it wouldn't make a difference, I used silicone scar patches on my scar for about six months, starting two weeks after the surgery, and now they remark that it's the best thyroidectomy scar they've ever seen.
posted by Enroute at 1:31 PM on May 5, 2008
Then one Tuesday I woke up and felt just dandy, and I've been feeling fine ever since.
All in all, having thyroid cancer was a good experience for me. I had struggled with depression for years, but the problem simply went away after I had my thyroid removed--perhaps I was subclinically hypothyroid before? We don't know. I have more energy and am much more cheerful and resilient now. I learned a lot about which friends and family members can be counted on in a crisis, and although that was a hard lesson, it's good to find out the truth before a real crisis hits. Finally, the experience made me think seriously about my priorities in life. I've made some big changes in my life as a result, and that has contributed to my happiness as well. So, all of this is just to say that although I know you're both probably feeling pretty scared and out of control right now, you may end up looking back on it as one of the most beneficial experiences of your life. I hope you do.
Oh--one more thing, despite all my doctors telling me it wouldn't make a difference, I used silicone scar patches on my scar for about six months, starting two weeks after the surgery, and now they remark that it's the best thyroidectomy scar they've ever seen.
posted by Enroute at 1:31 PM on May 5, 2008
My aunt was dx'd and treated for papillary thyroid cancer back in the early 1970s, when the drugs and radiation and such were no where near as advanced as they are today, and she gave birth to two healthy daughters after the fact. As others have posted above, if you're destined to get cancer, thyroid cancer is the best one to get.
posted by Oriole Adams at 2:09 PM on May 5, 2008
posted by Oriole Adams at 2:09 PM on May 5, 2008
Yep. Cancer lottery is exactly right. I'm a pathologist and if I had to get a cancer, papillary thyroid carcinoma is the one I want. Make sure you get a copy of your pathology report (after all someone is paying lots of money for it).
posted by i_am_a_Jedi at 3:30 PM on May 5, 2008
posted by i_am_a_Jedi at 3:30 PM on May 5, 2008
My mom had thyroid cancer when she was 19. She is now 47 and quite healthy- no real mark of the cancer except the scar across her neck. She takes one genaris pill, but nowhere near the cocktail of hormones that one doctor wanted to put her on. She gets physicals once every two years and they monitor it then.
She went on to have two very healthy daughters. As far as I know, she had no real complications with either pregnancies, nor did she have trouble concieving [I really wasn't supposed to happen at all- ooops!]
posted by shesaysgo at 3:54 PM on May 5, 2008
She went on to have two very healthy daughters. As far as I know, she had no real complications with either pregnancies, nor did she have trouble concieving [I really wasn't supposed to happen at all- ooops!]
posted by shesaysgo at 3:54 PM on May 5, 2008
My little sister had thyroid cancer when she was 19; all she has now is a barely-visible scar from having the thyroid removed. About 2 hours after surgery she managed to choke down a Big Mac, fries, and a large coke, so the surgery itself isn't so bad...
She also had 3 different treatments with radioactive iodine. The only thing that sucked about that is none of us of childbearing age and gender were allowed to be around her for about 48 hours after the treatments, because of the radiation. You can freeze your eggs if you're worried about things going weird because of whatever treatment gets recommended to you.
She was a healthy, happy, perky size 00 girl before the surgery and is now a healthy, happy, perky size 2 now.
Yeah, she's on a pill for life, but she was perfectly healthy within a few short months; she had no scary side effects from the treatments and acts as though it was really nothing to her. She didn't even complain once.
She's turning 22 tomorrow. You can barely even see where she had the surgery a year and a half ago, but that may partially be due to her youth.
posted by Unicorn on the cob at 7:09 PM on May 5, 2008
She also had 3 different treatments with radioactive iodine. The only thing that sucked about that is none of us of childbearing age and gender were allowed to be around her for about 48 hours after the treatments, because of the radiation. You can freeze your eggs if you're worried about things going weird because of whatever treatment gets recommended to you.
She was a healthy, happy, perky size 00 girl before the surgery and is now a healthy, happy, perky size 2 now.
Yeah, she's on a pill for life, but she was perfectly healthy within a few short months; she had no scary side effects from the treatments and acts as though it was really nothing to her. She didn't even complain once.
She's turning 22 tomorrow. You can barely even see where she had the surgery a year and a half ago, but that may partially be due to her youth.
posted by Unicorn on the cob at 7:09 PM on May 5, 2008
I did not have cancer, but I did have Grave's Disease which is when the immune system mistakenly attacks the thyroid gland. The treatment is the same. You should know that after drinking the radioactive iodine you have to avoid close contact with others for about a week. You can't share a bed or your dishes. However, I gave birth to my darling daughter about a year and a half later.
And yes you will have to take a thyroid pill for the rest of your life. And in order to get your pill your doctor will want your hormone levels checked every 6 months (if you stabilize he may allow you to go as long as a year between tests.) If you are uninsured that means a lab bill for around $275.00 plus your doctor's charge for a visit. Plus your pill. Don't lose your insurance!
One more thing. You'll probably gain weight. My neighbor is 60 and was diagnosed last year. She gained about 50 lbs. I gained 60. My aunt gained around 60. It may be extra difficult to take it off again.
posted by Secret Life of Gravy at 7:33 PM on May 5, 2008
And yes you will have to take a thyroid pill for the rest of your life. And in order to get your pill your doctor will want your hormone levels checked every 6 months (if you stabilize he may allow you to go as long as a year between tests.) If you are uninsured that means a lab bill for around $275.00 plus your doctor's charge for a visit. Plus your pill. Don't lose your insurance!
One more thing. You'll probably gain weight. My neighbor is 60 and was diagnosed last year. She gained about 50 lbs. I gained 60. My aunt gained around 60. It may be extra difficult to take it off again.
posted by Secret Life of Gravy at 7:33 PM on May 5, 2008
Response by poster: Thanks for all of the replies, they were all helpful. I've emailed the link to my wife for reading later tonight.
posted by beowulf573 at 7:53 PM on May 5, 2008
posted by beowulf573 at 7:53 PM on May 5, 2008
I am a thyroid cancer survivor, I had a partial thyroidectomy and take a daily pill. In the year following surgery my energy level went way up and I lost 85 pounds without trying.
posted by misspat at 4:36 PM on May 6, 2008
posted by misspat at 4:36 PM on May 6, 2008
This thread is closed to new comments.
I'm not sure if she got pregnant before or after she knew she had cancer, but I know that she knew she had cancer when she gave birth.
Best of luck.
posted by schyler523 at 11:12 AM on May 5, 2008