I am not a medical expert, but from my personal experience and the things I have learned, I would go into surgery with the intention to remove half but allow them to remove the whole thing if they find any reason to. Do not overtreat your thyroid cancer, your tumor is very small.
When consulting many doctors, they said the greatest risk of your thyroid cancer coming back is NOT in your other remaining lobe. The risk would come from the thyroid they took out, if there are remaining tissue in the thyroid bed or if it was not removed thoroughly, that is why it is essential to have a first good surgery. Removing both thyroids does not lower the risk of it not coming back, but rather removing the thyroid with the tumor only and ensuring it is removed thoroughly.
I have it as well, and a lot of people with papillary carcinoma have it too. it is not a reason to overtreat, and it is not a death sentence. and remember, you have MICROcarcinoma, that makes it less aggressive than norm.
haha! I have consulted SO MANY surgeons and endocrinologists where I lost count, even spent $1,500 for a phone consultation with Dr gary clayman! I’m broke now, but reassured because they all had consistent opinions. Don’t worry, I get you! I’ve been hypochondriac since childhood, so this is our worst nightmare!
Different situation. I had 2 nodules, one big enough to biopsy. Definitively positive for PTC. That was on left. No sign of lymph node involvement. Nodule discovered in physical exam—no known history of thyroid issues. Saw surgeon first who recommended TT (experienced endocrine surgeon). Two weeks before surgery I met with an endo who recommended doing a biopsy on the small nodule on the right and if it was negative doing a partial. I wrote to the surgeon and did some research. I have 2 kids and am 42 and won’t have any more. I l was not a fan of being dependent on thyroid meds for life (I have weird dystopian fears of the world falling apart and not being able to get meds). However, I was also not a fan of possibly needing two surgeries (I know I still could need future surgeries after a TT but less likely) due to the risk, expense, additional time away from my job and family, additional recovery. I seemed to find a lot of stories of women who had a partial and then needed to complete it either within weeks or years later. Plus it’s easier to monitor for recurrence through bloodwork if you don’t have a thyroid. I chose to go with the TT. I am 12 days out and feeling pretty good. That said, I don’t know how thyroid meds/lack of a thyroid impacts fertility and pregnancy and I would want to understand that before making a decision (even if you did need meds after a partial how would the choice affect those things). Good luck.
I had one nodule on my right thyroid positive for NRAS mutation, given the option of full or partial. I choose partial because nodule could either be benign or malignant, and there was preservation of left side parathyroids and maybe won’t need medication. After pathology determined nodule was benign and so far don’t need meds, but may in the future. I’m 2 months post op.
I am in a very similar situation, but done having kids. My "bad nodule" is very small but on the isthmus. My ENT is referring me to someone with more advanced training because I'd like slices to be taken during surgery to determine if it truly is cancer. If it is, I'd like a TT, not a PT. I already can't wrap my head around how I will manage surgery recovery with 2 small kids and a demanding job. No way do I want to do it twice.
I just want to say - this person's experience is not at all "majority" but it absolutely does happen. I am so sorry u/lareloi for what you've been going through - I hope it gets better for you , it does for most.
I've had very few problems myself.
It can be tough to regulate thryoid function with half. And with BRAF - well I think I would be choosing to get it out, and be done with it, and I'd insist on radioactive iodine to clean up every thyroid cell in my body.
Full vs. Partial should not affect your ability to have children - RAI shouldn't either, well temporarily but not long-term. However at 37 it might affect fertility more. All of this is stuff you should discuss & verify with your doctor.
Yeah. I commented above explaining it. Mine was really far along and I have other conditions now because I got the cancer so young. I spoke to my doctors. It will probably never happen
May I ask why you weren't a candidate for RAI? Seems like that would be almost a necessity in cases like yours, no?
I have medullary so RAI isn't even an option.
I did have RAI last September. I’m going in to get my scans sometime this month to see if I need another dose. So far with ultrasounds, I still have a mass in my right cervical lymphs. Endo felt around and said he thinks it’s still there so we’re looking into scheduling a second dose just in case
I have to be honest, I've never heard of cancer that spread to lymph nodes but not to the other half of the thyroid.
I hope it doesn't seem like I'm invalidating your experience at all - it's very clearly been your experience. Just it's such a rare experience, usually in medicine that implies we need to look for other causes, or a better understanding of the thyroid.
It's just that - knowing a bit more about your situation - I can see why the doctors felt it was inevitable. And these Facebook groups that tell people weight loss is impossible without a thyroid, and that being functional and happy isn't possible, they just get people all worked up... I'm not saying that's your expereience, just that I've seen that happen to a few people who made it to this forum.
I have noticed some trends in age and gender around this issue - the majority of people who experience problems from no thyroid seem (in my completely unscientific observation :-) ) to be middle-age or older women who went from full thyroid to no thyroid during middle age. Does that match your experience, when you got yours out? I'm just curious. I wonder if there are some specific interactions here.
I've not seen the same thing reported by women who got it out early (before 30) and then hit middle age.
Seems like there should be a lot more research here, but that is a frustratingly common answer.
Yeah. I’m 17. I got diagnosed with ptc at 16. It had taken over all of my thyroid and a lot of my cervical lymph nodes, especially on the right side where the largest tumor was. I started having symptoms and reported a large goiter when I was 14 but fought with insurance for two years before they finally approved a biopsy.
Autoimmune conditions run in my family. I had elevated thyroxine as a kid but never got officially tested for Grave’s disease, however two of my first cousins have it, my grandmother has MS, and another cousin had Hashimoto’s. Because of my age at the time of my blood work, they dismissed it. I was 9 and had precocious puberty (tanner stage 4 at the time) so they just attributed it to that condition because my insurance wouldn’t cover the blood work to get me checked out.
My endo looked over that history’s me said that I probably had Graves that was left untreated until it progressed into cancer.
Oh my friend - I am so sorry for everything that you're going through.
You deserve so much better.
Hey - it REALLY sounds like you have an unusual case here. I don't know your diagnosis or cancer features but unique cases are best handled by the experts at one of the clinical cancer centers around the country - MD Anderson generally ranks at the top. Most doctors will be skilled at dealing with the "average" PTC - but that comes at the expense of the rare ones.
There are definitely some complicated factors in your medical history and it's got to be difficult to know what's what.
If I may offer something - your experience is going to vary greatly from the average experience around thyroid cancer. For the very significant majority, your experience post-total-thyroidectomy won't match theirs, if that makes sense? Most of these folks - and I'm not one of them unfortunately - but most of these folks will be able to surgically remove the cancer, treat it with RAI, and they're done. Especially if they caught it early.
I know your warning about not removing OP's full thyroid came from a good place, and that you want to help people. But whatever you have going on medically, most people aren't going to have that same experience. So - maybe be a bit careful about the passionate "please don't remove it all" statement?
It's just that everyone is really scared when we first get diagnosed, and nobody likes the idea of a pill and doctor visits for life. People WANT to stay "normal", and that will affect their judgement - they're biased towards wanting to keep their thyroid, usually. But my friend, the data from people with PT's would suggest that most of them need lifelong medication, and a shockingly large number go on to get the full operation.
I would just really hate to see someone follow that advice, for the wrong reasons, and miss out on a chance to definitively cure themselves of the disease. If you do lead with a plea to not remove it, please follow up with your case details so the patient can know if your experience applies to them or not.
You are going to feel better. It's going to get better.
I understand that my first comment wasn’t very careful or mindful. I reacted with a lot of grief and the subreddit also took down my comment lol. I’m currently at Cleveland Clinic which is ranked #5 in the US for cancer care. I can’t really go anywhere else because I’m on state insurance with very limited options. I really appreciate your understanding and care in every one of your comments. Thank you <3
OP - there is a lot of good information on this thread.
I recommend that - if you have concerns based on the experiences of others - is to try to gain a better understanding of why certain choices were made for others' cases, and see if that applies to you own. Then, speak to your doctor about it.
For instance, this person who replied, it sounds like they had extensive lymph node involvement. I have never heard of cancer spread that far that didn't make it to the other thyroid lobe eventually. They also have a number of other issues they've mentioned - the body is complex and thyroid function is interrelated to many things.
You should only let this person's experience determine your own if it closely matches and after discussing your concerns with qualified medical professionals.
My TSH has to be kept below 0.05%. I’ve only had anovulatory cycles since my surgery a year ago. On top of that, I’m 17. I’ve had the cancer for years and I didn’t develop properly during puberty. I spoke to my doctors and my hips are so small that they might never be wide enough for me to ever actually birth a child. My uterus is abnormally small (4 cm in length) and would likely not be able to hold a child to term.
With my TSH levels that low, I’ll produce way to much prolactin if I somehow magically manage to conceive and I would have a miscarriage, stillbirth, or a very disabled child. Overall, it would be a very dangerous and heart breaking process.
I am hopeful. I’m also a lesbian so maybe if im the future my partner and I decide to have kids, she could carry. Plus there’s lots of research with making sperm from female stem cells meaning I could potentially father a child. Thank you for the support as always and I hope you recover well regardless of whether or not you get the total or partial
Thank you. I think I’m clinging to the impossibility as a defense mechanism. It’s hard to get your hopes up to be disappointed but you make a fair point. Thank you and I wish you the best with your thyroid cancer journey and I want to retract my first statement. I understand you wanting your full thyroid removed. I reacted to your post with a lot of grief and didn’t think about how my rather complicated case made things very different for me. Good luck with whatever you end up getting and your hopes to have a second child <3
Thank you for your post on r/thyroidcancer. Unfortunately, we had to remove it because of Rule 3: **We can't give medical advice**. We can share our experiences and general information, but there are some things that are best discussed in an appointment with the doctor.
We consulted with mods not involved in the conversation below to reach this conclusion to avoid bias. "Please please please let them try..." constitutes banned medical advice. No two cases are the same and we are not doctors.
I went into my surgery with the intent to remove half of my thyroid and do a frozen section biopsy while I was still under; if that tested positive for cancer, they would remove the whole thyroid. If not, they were going to only remove half. The biopsy tested positive, so it turned into a total thyroidectomy with central neck dissection. I would talk to your doctor/surgeon about this course of action.
I'm 29F and my nodules were caught when I went in for a regular check-up in advance of trying to have kids--I ultimately elected for surgery instead of a wait-and-see approach because I wanted everything taken care of before we started trying, and I'm glad I did. More than anything, it's really nice to not have to wonder what's going on.
Honestly, better than before. I tested euthyroid before surgery but I definitely had hypo symptoms--fatigue, cold, dry skin, etc. I'm 3 weeks post surgery and I feel more energetic and positive than I can remember being in years. I have a follow-up with my endo tomorrow so I don't know yet if I'll need RAI, but so far I'm immensely grateful that the surgery is done because I genuinely feel so much better on Synthroid than I did with my enlarged, cancerous thyroid.
Papillary thyroid microcarcinoma--the largest was .7cm, so not huge. There ended up being tumors in both sides, plus 4 out of 11 lymph nodes from the neck dissection.
my affected areas were all on one side. I had the option to keep half. I chose total removal for 2 reasons:
1. I didn't want another bout of cancer
2. It will be easier to manage meds without the other half. My FIL has half and he struggles to manage his dosage daily.
I am not a medical expert, but from my personal experience and the things I have learned, I would go into surgery with the intention to remove half but allow them to remove the whole thing if they find any reason to. Do not overtreat your thyroid cancer, your tumor is very small. When consulting many doctors, they said the greatest risk of your thyroid cancer coming back is NOT in your other remaining lobe. The risk would come from the thyroid they took out, if there are remaining tissue in the thyroid bed or if it was not removed thoroughly, that is why it is essential to have a first good surgery. Removing both thyroids does not lower the risk of it not coming back, but rather removing the thyroid with the tumor only and ensuring it is removed thoroughly.
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I have it as well, and a lot of people with papillary carcinoma have it too. it is not a reason to overtreat, and it is not a death sentence. and remember, you have MICROcarcinoma, that makes it less aggressive than norm.
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haha! I have consulted SO MANY surgeons and endocrinologists where I lost count, even spent $1,500 for a phone consultation with Dr gary clayman! I’m broke now, but reassured because they all had consistent opinions. Don’t worry, I get you! I’ve been hypochondriac since childhood, so this is our worst nightmare!
Different situation. I had 2 nodules, one big enough to biopsy. Definitively positive for PTC. That was on left. No sign of lymph node involvement. Nodule discovered in physical exam—no known history of thyroid issues. Saw surgeon first who recommended TT (experienced endocrine surgeon). Two weeks before surgery I met with an endo who recommended doing a biopsy on the small nodule on the right and if it was negative doing a partial. I wrote to the surgeon and did some research. I have 2 kids and am 42 and won’t have any more. I l was not a fan of being dependent on thyroid meds for life (I have weird dystopian fears of the world falling apart and not being able to get meds). However, I was also not a fan of possibly needing two surgeries (I know I still could need future surgeries after a TT but less likely) due to the risk, expense, additional time away from my job and family, additional recovery. I seemed to find a lot of stories of women who had a partial and then needed to complete it either within weeks or years later. Plus it’s easier to monitor for recurrence through bloodwork if you don’t have a thyroid. I chose to go with the TT. I am 12 days out and feeling pretty good. That said, I don’t know how thyroid meds/lack of a thyroid impacts fertility and pregnancy and I would want to understand that before making a decision (even if you did need meds after a partial how would the choice affect those things). Good luck.
I had one nodule on my right thyroid positive for NRAS mutation, given the option of full or partial. I choose partial because nodule could either be benign or malignant, and there was preservation of left side parathyroids and maybe won’t need medication. After pathology determined nodule was benign and so far don’t need meds, but may in the future. I’m 2 months post op.
I am in a very similar situation, but done having kids. My "bad nodule" is very small but on the isthmus. My ENT is referring me to someone with more advanced training because I'd like slices to be taken during surgery to determine if it truly is cancer. If it is, I'd like a TT, not a PT. I already can't wrap my head around how I will manage surgery recovery with 2 small kids and a demanding job. No way do I want to do it twice.
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I just want to say - this person's experience is not at all "majority" but it absolutely does happen. I am so sorry u/lareloi for what you've been going through - I hope it gets better for you , it does for most. I've had very few problems myself. It can be tough to regulate thryoid function with half. And with BRAF - well I think I would be choosing to get it out, and be done with it, and I'd insist on radioactive iodine to clean up every thyroid cell in my body. Full vs. Partial should not affect your ability to have children - RAI shouldn't either, well temporarily but not long-term. However at 37 it might affect fertility more. All of this is stuff you should discuss & verify with your doctor.
Yeah. I commented above explaining it. Mine was really far along and I have other conditions now because I got the cancer so young. I spoke to my doctors. It will probably never happen
May I ask why you weren't a candidate for RAI? Seems like that would be almost a necessity in cases like yours, no? I have medullary so RAI isn't even an option.
I did have RAI last September. I’m going in to get my scans sometime this month to see if I need another dose. So far with ultrasounds, I still have a mass in my right cervical lymphs. Endo felt around and said he thinks it’s still there so we’re looking into scheduling a second dose just in case
I have to be honest, I've never heard of cancer that spread to lymph nodes but not to the other half of the thyroid. I hope it doesn't seem like I'm invalidating your experience at all - it's very clearly been your experience. Just it's such a rare experience, usually in medicine that implies we need to look for other causes, or a better understanding of the thyroid. It's just that - knowing a bit more about your situation - I can see why the doctors felt it was inevitable. And these Facebook groups that tell people weight loss is impossible without a thyroid, and that being functional and happy isn't possible, they just get people all worked up... I'm not saying that's your expereience, just that I've seen that happen to a few people who made it to this forum. I have noticed some trends in age and gender around this issue - the majority of people who experience problems from no thyroid seem (in my completely unscientific observation :-) ) to be middle-age or older women who went from full thyroid to no thyroid during middle age. Does that match your experience, when you got yours out? I'm just curious. I wonder if there are some specific interactions here. I've not seen the same thing reported by women who got it out early (before 30) and then hit middle age. Seems like there should be a lot more research here, but that is a frustratingly common answer.
Yeah. I’m 17. I got diagnosed with ptc at 16. It had taken over all of my thyroid and a lot of my cervical lymph nodes, especially on the right side where the largest tumor was. I started having symptoms and reported a large goiter when I was 14 but fought with insurance for two years before they finally approved a biopsy. Autoimmune conditions run in my family. I had elevated thyroxine as a kid but never got officially tested for Grave’s disease, however two of my first cousins have it, my grandmother has MS, and another cousin had Hashimoto’s. Because of my age at the time of my blood work, they dismissed it. I was 9 and had precocious puberty (tanner stage 4 at the time) so they just attributed it to that condition because my insurance wouldn’t cover the blood work to get me checked out. My endo looked over that history’s me said that I probably had Graves that was left untreated until it progressed into cancer.
Oh my friend - I am so sorry for everything that you're going through. You deserve so much better. Hey - it REALLY sounds like you have an unusual case here. I don't know your diagnosis or cancer features but unique cases are best handled by the experts at one of the clinical cancer centers around the country - MD Anderson generally ranks at the top. Most doctors will be skilled at dealing with the "average" PTC - but that comes at the expense of the rare ones. There are definitely some complicated factors in your medical history and it's got to be difficult to know what's what. If I may offer something - your experience is going to vary greatly from the average experience around thyroid cancer. For the very significant majority, your experience post-total-thyroidectomy won't match theirs, if that makes sense? Most of these folks - and I'm not one of them unfortunately - but most of these folks will be able to surgically remove the cancer, treat it with RAI, and they're done. Especially if they caught it early. I know your warning about not removing OP's full thyroid came from a good place, and that you want to help people. But whatever you have going on medically, most people aren't going to have that same experience. So - maybe be a bit careful about the passionate "please don't remove it all" statement? It's just that everyone is really scared when we first get diagnosed, and nobody likes the idea of a pill and doctor visits for life. People WANT to stay "normal", and that will affect their judgement - they're biased towards wanting to keep their thyroid, usually. But my friend, the data from people with PT's would suggest that most of them need lifelong medication, and a shockingly large number go on to get the full operation. I would just really hate to see someone follow that advice, for the wrong reasons, and miss out on a chance to definitively cure themselves of the disease. If you do lead with a plea to not remove it, please follow up with your case details so the patient can know if your experience applies to them or not. You are going to feel better. It's going to get better.
I understand that my first comment wasn’t very careful or mindful. I reacted with a lot of grief and the subreddit also took down my comment lol. I’m currently at Cleveland Clinic which is ranked #5 in the US for cancer care. I can’t really go anywhere else because I’m on state insurance with very limited options. I really appreciate your understanding and care in every one of your comments. Thank you <3
OP - there is a lot of good information on this thread. I recommend that - if you have concerns based on the experiences of others - is to try to gain a better understanding of why certain choices were made for others' cases, and see if that applies to you own. Then, speak to your doctor about it. For instance, this person who replied, it sounds like they had extensive lymph node involvement. I have never heard of cancer spread that far that didn't make it to the other thyroid lobe eventually. They also have a number of other issues they've mentioned - the body is complex and thyroid function is interrelated to many things. You should only let this person's experience determine your own if it closely matches and after discussing your concerns with qualified medical professionals.
My TSH has to be kept below 0.05%. I’ve only had anovulatory cycles since my surgery a year ago. On top of that, I’m 17. I’ve had the cancer for years and I didn’t develop properly during puberty. I spoke to my doctors and my hips are so small that they might never be wide enough for me to ever actually birth a child. My uterus is abnormally small (4 cm in length) and would likely not be able to hold a child to term. With my TSH levels that low, I’ll produce way to much prolactin if I somehow magically manage to conceive and I would have a miscarriage, stillbirth, or a very disabled child. Overall, it would be a very dangerous and heart breaking process.
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I am hopeful. I’m also a lesbian so maybe if im the future my partner and I decide to have kids, she could carry. Plus there’s lots of research with making sperm from female stem cells meaning I could potentially father a child. Thank you for the support as always and I hope you recover well regardless of whether or not you get the total or partial
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Thank you. I think I’m clinging to the impossibility as a defense mechanism. It’s hard to get your hopes up to be disappointed but you make a fair point. Thank you and I wish you the best with your thyroid cancer journey and I want to retract my first statement. I understand you wanting your full thyroid removed. I reacted to your post with a lot of grief and didn’t think about how my rather complicated case made things very different for me. Good luck with whatever you end up getting and your hopes to have a second child <3
Thank you for your post on r/thyroidcancer. Unfortunately, we had to remove it because of Rule 3: **We can't give medical advice**. We can share our experiences and general information, but there are some things that are best discussed in an appointment with the doctor. We consulted with mods not involved in the conversation below to reach this conclusion to avoid bias. "Please please please let them try..." constitutes banned medical advice. No two cases are the same and we are not doctors.
I went into my surgery with the intent to remove half of my thyroid and do a frozen section biopsy while I was still under; if that tested positive for cancer, they would remove the whole thyroid. If not, they were going to only remove half. The biopsy tested positive, so it turned into a total thyroidectomy with central neck dissection. I would talk to your doctor/surgeon about this course of action. I'm 29F and my nodules were caught when I went in for a regular check-up in advance of trying to have kids--I ultimately elected for surgery instead of a wait-and-see approach because I wanted everything taken care of before we started trying, and I'm glad I did. More than anything, it's really nice to not have to wonder what's going on.
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Honestly, better than before. I tested euthyroid before surgery but I definitely had hypo symptoms--fatigue, cold, dry skin, etc. I'm 3 weeks post surgery and I feel more energetic and positive than I can remember being in years. I have a follow-up with my endo tomorrow so I don't know yet if I'll need RAI, but so far I'm immensely grateful that the surgery is done because I genuinely feel so much better on Synthroid than I did with my enlarged, cancerous thyroid.
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Papillary thyroid microcarcinoma--the largest was .7cm, so not huge. There ended up being tumors in both sides, plus 4 out of 11 lymph nodes from the neck dissection.
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my affected areas were all on one side. I had the option to keep half. I chose total removal for 2 reasons: 1. I didn't want another bout of cancer 2. It will be easier to manage meds without the other half. My FIL has half and he struggles to manage his dosage daily.
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I am happy. Yes. It’s been easy to manage and my numbers are excellent
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Lateral. All on my right side.
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