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Upcoming Thyroidectomy
I will be having a thyroidectomy in the next few weeks, and I am very nervous. An ultrasound of my thyroid showed numerous nodules, and an uptake scan showed none of them were "cold." The needle biopsies of the three largest were basically inconclusive, but the two largest were "suspicious for papillary carcinoma" - one with a follicular variant. The surgeon recommended surgery.
I wanted to see an endocrinologist first, but the office is being difficult - they wouldn't let my surgeon's office make me an appointment without seeing my file first. They've now had the paperwork for a week, and nothing. I am very frustrated - they are the only endocrinologists within 35 miles of here! I would like to know what to expect after the surgery? How long does it usually take to find the right dose of medicine (synthroid, etc.)? How do you feel while they are adjusting it? AND if it does turn out to be cancerous, is radioactive iodine treatment always necessary?
Thanks so much for "listening!"
I wanted to see an endocrinologist first, but the office is being difficult - they wouldn't let my surgeon's office make me an appointment without seeing my file first. They've now had the paperwork for a week, and nothing. I am very frustrated - they are the only endocrinologists within 35 miles of here! I would like to know what to expect after the surgery? How long does it usually take to find the right dose of medicine (synthroid, etc.)? How do you feel while they are adjusting it? AND if it does turn out to be cancerous, is radioactive iodine treatment always necessary?
Thanks so much for "listening!"
I'ts not a stupid question. Most people have nodules on their thyroids - that is very common.
I can only tell you about my own experience. First, they did an ultrasound of the thyroid. Then they did an "uptake scan" where you take a radioactive pill, wait for it to absorb, then they take pictures of the gland. The way the nodules absorb this can tell them things - a "cold" nodule (one that does not absorb the "stuff") is more suspicious than ones that do absorb it.
The next step was a needle biopsy. The needle is used to remove cells and/or tissue from the nodules. I had 3 done at once (of my 3 largest nodules). As two of the nodules came back suspicious for cancer, they recommend removing the gland to determine if it is indeed cancer.
You might want to post on the main board instead of just as a reply to this thread, as I know many of the people on the board will be able to answer this for you, too.
Hope that helped!
I can only tell you about my own experience. First, they did an ultrasound of the thyroid. Then they did an "uptake scan" where you take a radioactive pill, wait for it to absorb, then they take pictures of the gland. The way the nodules absorb this can tell them things - a "cold" nodule (one that does not absorb the "stuff") is more suspicious than ones that do absorb it.
The next step was a needle biopsy. The needle is used to remove cells and/or tissue from the nodules. I had 3 done at once (of my 3 largest nodules). As two of the nodules came back suspicious for cancer, they recommend removing the gland to determine if it is indeed cancer.
You might want to post on the main board instead of just as a reply to this thread, as I know many of the people on the board will be able to answer this for you, too.
Hope that helped!
How do you know when a nodule is cancer or not without having the surgry? I have nodules too! Sorry if it is a stupid question.
Welcome! Isn't this a wonderful site? I've learned so much here.
It looks like we are going under the knife the same week.... and I am with you - trying to get out of it and absolutely terrified it's cancer.
I'm 33 w/no other health issues, either, so this has really thrown me for a loop. I'm glad I found this site to do research and read up on things. It reassures me (most of the time!).
The scar is actually one thing I'm not worried about. My aunt had a TT almost 30 years ago, and I've never even noticed her scar. You have to look for it. I'm thinking they've made improvements in the past 30 years, so that part doesn't scare me. Though a friend has already suggested I be Frankenstein for Halloween this year. =)
Best of luck to you!
It looks like we are going under the knife the same week.... and I am with you - trying to get out of it and absolutely terrified it's cancer.
I'm 33 w/no other health issues, either, so this has really thrown me for a loop. I'm glad I found this site to do research and read up on things. It reassures me (most of the time!).
The scar is actually one thing I'm not worried about. My aunt had a TT almost 30 years ago, and I've never even noticed her scar. You have to look for it. I'm thinking they've made improvements in the past 30 years, so that part doesn't scare me. Though a friend has already suggested I be Frankenstein for Halloween this year. =)
Best of luck to you!
Hello all -
I'm new here. Just reading your postings. I'm having total thyroidectomy on 3/12. Have one 3.5 cm nodule and several smaller ones. FNA showed follicular neoplasm. My Doctor says they won't know if it's malignant unless it comes out. I'm very nervous too about this surgery and keep looking for ways to get out of it, but I think that's not going to happen. Found some photos of thyroid surgery scars on line and can't wait to look like Frankenstein. btw, I just turned 47 last week. No other health issues. I went to the ENT to have my right ear cleaned and he found the nodule. I'm terrified that it's cancer. Both my parents died from long, painful bouts with cancer (lung and breast). I'm adopted so not significant in terms of heredity. Tying to focus on positive and get this behind me. Good luck to you! I'm also not seeing an endocrinologist until after surgery. Thanks to this community for providing support and valuable information!
I'm new here. Just reading your postings. I'm having total thyroidectomy on 3/12. Have one 3.5 cm nodule and several smaller ones. FNA showed follicular neoplasm. My Doctor says they won't know if it's malignant unless it comes out. I'm very nervous too about this surgery and keep looking for ways to get out of it, but I think that's not going to happen. Found some photos of thyroid surgery scars on line and can't wait to look like Frankenstein. btw, I just turned 47 last week. No other health issues. I went to the ENT to have my right ear cleaned and he found the nodule. I'm terrified that it's cancer. Both my parents died from long, painful bouts with cancer (lung and breast). I'm adopted so not significant in terms of heredity. Tying to focus on positive and get this behind me. Good luck to you! I'm also not seeing an endocrinologist until after surgery. Thanks to this community for providing support and valuable information!
Is today your surgery or next week? If it's today, I'm thinking of you and hope it all goes well!
Glad you reached out and got some good feedback that helps you. Best wishes to you for your upcoming surgery. Hope your appt with the endo allays some of your fears. Don't forget, with anesthesia - the statistics are on your side.
I'm one big wimp too! Good luck.
I'm one big wimp too! Good luck.
Thank you SO much for your post. You are right - knowledge really is empowering, and I have learned a ton from this forum. I am currently reading up on RAI and pregnancy, as well as TSH levels.
I see the endo a week from Tuesday, and I am compiling a list of questions for her. I am so glad I found this site!
My surgery has been scheduled for 2 weeks from Thursday. I am utterly and completely terrified, but that has more to do with my fear/aversion of anesthesia than anything else. I am one big wimp. I know it will be good to have some concrete answers, as well as a plan moving forward.
Again, my thanks for your post!
I see the endo a week from Tuesday, and I am compiling a list of questions for her. I am so glad I found this site!
My surgery has been scheduled for 2 weeks from Thursday. I am utterly and completely terrified, but that has more to do with my fear/aversion of anesthesia than anything else. I am one big wimp. I know it will be good to have some concrete answers, as well as a plan moving forward.
Again, my thanks for your post!
I'm glad I'm not the only one who's in this process and feeling a bit lost! This forum really has been wonderfully helpful. I've learned so much, and I really feel empowered by the knowledge.
I see the endo a week from Tuesday, and I am set to bombard her with questions (and get copies of all of my tests so far). My surgery is scheduled for 2 weeks from Thursday.
Did you have anything special done for your pre-op or just bloodwork? My surgeon told me he wants to do bloodwork, and I'm waiting for a call from the Pre-Op center to set all that up.
I can understand wanting it over with....it's been quite a rollercoaster! Best of luck to you!
I see the endo a week from Tuesday, and I am set to bombard her with questions (and get copies of all of my tests so far). My surgery is scheduled for 2 weeks from Thursday.
Did you have anything special done for your pre-op or just bloodwork? My surgeon told me he wants to do bloodwork, and I'm waiting for a call from the Pre-Op center to set all that up.
I can understand wanting it over with....it's been quite a rollercoaster! Best of luck to you!
Hey there, how did your surgery turn out? I'm praying it went well. I had my pre-op done yesterday. My big day is next Thursday. I am so over all this mess. I just want to get it OVER with! Let us know how you did.
I also have surgery coming up in a week and know absolutely nothing about this process. The people on this forum have been very informative and have relieved a lot of the tension I have been feeling about this surgery. My family doctor agrees with my surgeon on going ahead and removing the mass and then biopsy it afterwards.
Knowing your pre-surgery TSH test results is useful, if only for a baseline against which to measure subsequent test results. It's your right to ask for and receive a hard copy of your test results (my HMO mails tests results to all patients, and also posts them to my online medical chart--medical software created by a company here in town). If you do have cancer, then treatment will be slightly different than if you just have benign nodules--they will try to keep your TSH lower than 1. I started keeping a record of my test results because I have chronic low calcium, which is being followed closely. I learned (in large part from this forum!) that being informed is truly empowering, and I attribute part of my recovery to contacts I made on this forum, who inspired me to ask my doctor about different courses of treatment for the low calcium.
If you do a site search, you'll find information about RAI and pregnancy. You might also check the thyroid forum where the doctor answers questions, if you haven't already done that. People post about pregancy quite frequently.
If you do a site search, you'll find information about RAI and pregnancy. You might also check the thyroid forum where the doctor answers questions, if you haven't already done that. People post about pregancy quite frequently.
Thank you all SO MUCH for your posts! I feel a lot better after hearing from people who have gone through this.
I feel a little dumb, though - I don't know any of my hormone levels. I was told they were all "normal." It was an enlarged thyroid detected by my doctor that started the whole process for me. The ultrasound showed it to be "covered in nodules."
As for family history, my maternal aunt had her thyroid removed (almost 30 yrs ago), but it was not due to nodules/possible cancer but an overactive gland. She has been very helpful and supportive.
I really want to talk to the endo about pregnancy and such after all of this, especially as it relates to RAI (should that be necessary). I am 33 and have no children yet, but my husband and I were going to try this year.
I should hear from the endo's office today, and the surgeon tells me I should be having surgery in 2-3 weeks.
Thanks again for all of your help!
I feel a little dumb, though - I don't know any of my hormone levels. I was told they were all "normal." It was an enlarged thyroid detected by my doctor that started the whole process for me. The ultrasound showed it to be "covered in nodules."
As for family history, my maternal aunt had her thyroid removed (almost 30 yrs ago), but it was not due to nodules/possible cancer but an overactive gland. She has been very helpful and supportive.
I really want to talk to the endo about pregnancy and such after all of this, especially as it relates to RAI (should that be necessary). I am 33 and have no children yet, but my husband and I were going to try this year.
I should hear from the endo's office today, and the surgeon tells me I should be having surgery in 2-3 weeks.
Thanks again for all of your help!
Don't stress too much about not seeing an endo before your surgery; many of us didn't. In fact my entire family had our thyroids out before we talked to a thyroid specialist (also for cancer).
Since you have more than one nodule that is suspicious for papillary carcinoma (and possibly follicular variant) RAI *may* be indicated for you *if* it is cancerous. It depends on a lot of things; your age, size of cancerous nodules, your family history, the exact type of cancer, any lymph node involvement, etc. All of that information may not be available immediately and may take a week or so for the pathology to come in.
Meanwhile the surgeon will probably give you a prescription for thyroid replacement medication.
From there a determination will be made whether or not to recommend you for RAI. The exact dose of RAI is usually determined by the nuclear medicine department - not the endocrinologist.
Don't put off the surgery waiting on an endocrinologist because it sounds that, based on the FNA results, surgery is indicated.
Utahmomma
papillary carcinoma '03 recurrence and RAI '06
three sisters with papillary carcinoma
Since you have more than one nodule that is suspicious for papillary carcinoma (and possibly follicular variant) RAI *may* be indicated for you *if* it is cancerous. It depends on a lot of things; your age, size of cancerous nodules, your family history, the exact type of cancer, any lymph node involvement, etc. All of that information may not be available immediately and may take a week or so for the pathology to come in.
Meanwhile the surgeon will probably give you a prescription for thyroid replacement medication.
From there a determination will be made whether or not to recommend you for RAI. The exact dose of RAI is usually determined by the nuclear medicine department - not the endocrinologist.
Don't put off the surgery waiting on an endocrinologist because it sounds that, based on the FNA results, surgery is indicated.
Utahmomma
papillary carcinoma '03 recurrence and RAI '06
three sisters with papillary carcinoma
Hi there and welcome to the board. I am two weeks out from having a total thyroidectomy because I had one nodule that had suspicous cells for cancer. It turned out I did have a 5mm papilliary carcinoma with follicular variant. My surgery went smoothly and I'm happy to report that I did not have any trouble with my calcium dropping and my voice is as it was before the surgery. The worst part after surgery is the sore throat for two days.
I'm meeting with my endo tomorrow to discuss RAI. As I understand, because my cancer was under 1.5cm and because it was confined to my thyroid (there was no spread to lymph nodes or blood vessels) RAI is not always recommended. My surgeon, however, recommends I do it because of my age (only 39) and because of the follicular variant. I'm eager to meet with my endo tomorrow (a thyroid cancer survivor herself) to get her opinion.
I haven't had to deal with thyroid medicine yet so others can better answer that question.
Maybe you could call your surgeons office and ask them to check on the status of your paperwork getting to the endo.
Best wishes and keep us posted!
I'm meeting with my endo tomorrow to discuss RAI. As I understand, because my cancer was under 1.5cm and because it was confined to my thyroid (there was no spread to lymph nodes or blood vessels) RAI is not always recommended. My surgeon, however, recommends I do it because of my age (only 39) and because of the follicular variant. I'm eager to meet with my endo tomorrow (a thyroid cancer survivor herself) to get her opinion.
I haven't had to deal with thyroid medicine yet so others can better answer that question.
Maybe you could call your surgeons office and ask them to check on the status of your paperwork getting to the endo.
Best wishes and keep us posted!
If you have a normal TSH before surgery (and there is no cancer), they will start you off on a dose of thyroid medicine based on your body weight. After about six weeks, they'll test the TSH again, and adjust the dose incrementally from there, based on the numbers and how you feel. I had a TT for benign nodules, and I didn't feel any different after the surgery (except for the normal healing process). My TSH has ranged between 2 and 4 over the last year, and I am hoping to get it back below 2--but only because that was my before-surgery level. I feel about the same at my current level. I should explain: aside from some issues with calcium, which seem to be finally resolving, I feel great!. Exercise and a healthy diet are important. I'm not an expert on RAI treatment, but someone on this board is sure to know. Good luck!
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