Aa
Lobectomy or total thyroidectomy?
I've been diagnosed with a nodule that is "Suspicious for Hurthle Cell neoplasm" by FNB. I had a FNB sent for Afirma testing and it has come back "Suspicious, risk of malignancy ~50%". My ENT has scheduled me for surgery already but I don't meet with her until May 28 (<30 days before the surgery). I am trying to determine if I should plan on a lobectomy or a total thyroidectomy, since I have additional thyroid issues than just the suspicious nodule.
Brief summary:
I have an enlarged thyroid/multinodular goiter (diagnosed by visible lumps on neck in mirror) in March. I have many hypothyroid symptoms including fatigue, cold sensitivity, menstrual problems, dry skin, brittle coarse hair, and have in the past had problems with unexplained weight gain (I have lost the weight by counting calories meticulously and running a lot) and over-all sluggishness. My thyroid hormone levels are "normal" but slightly high TSH indicates something thyroid related is going on (as well as my ultrasound results below).
Blood test results:
TSH 3.44 (0.450-4.500)
FT4 1.44 (0.82-1.77)
FT3 3.2 (2.0-4.4)
And an ultrasound (summary):
Right lobe: 6x2.4x2.3 cm. Heterogeneous with background diffuse nodularity. There are isoechoic nodules measuring up to 1.9cm. There is also a hypoechoic solid nodule posteriorly measuring 1.4cm.
Left lobe: 5.8x3.1x3 cm. Background diffuse nodularity. Solid isoechoic 2.2cm nodule with some internal vascularity, smaller nodule 1.4cm.
No swollen lymph nodes.
The suspicious nodule is 1.4cm on the right lobe, however, my whole thyroid is enlarged and the biopsy doctor/pathologist said it looks like lots of nodules growing in to eachother and that the 2.2cm nodule on the left side (which I can see when I swallow, right behind my carotid and jugular and above my collarbone) is actually 2.8cm (which is closer to what I measured myself using a tape measure on my neck where I saw it). I am currently awaiting blood tests for thyroid antibodies (Hashimoto's).
I was wondering if anyone had any suggestions as to whether I should have just a lobectomy or a total thyroidectomy (I'm not even sure if this is my choice, but I like to consider all my options and if I'll eventually need a TT it would be easier to do it in one go). If I had a totally functioning healthy thyroid with one suspicious nodule I would definitely do a lobectomy, but since my thyroid is already enlarged and function is livable but not great, and there's a chance I will need a TT eventually if the nodules continue to grow and start to obstruct airway or esophagus, and I'm thinking a TT would be a better option in this case.
Any thoughts or suggestions would be greatly appreciated.
Brief summary:
I have an enlarged thyroid/multinodular goiter (diagnosed by visible lumps on neck in mirror) in March. I have many hypothyroid symptoms including fatigue, cold sensitivity, menstrual problems, dry skin, brittle coarse hair, and have in the past had problems with unexplained weight gain (I have lost the weight by counting calories meticulously and running a lot) and over-all sluggishness. My thyroid hormone levels are "normal" but slightly high TSH indicates something thyroid related is going on (as well as my ultrasound results below).
Blood test results:
TSH 3.44 (0.450-4.500)
FT4 1.44 (0.82-1.77)
FT3 3.2 (2.0-4.4)
And an ultrasound (summary):
Right lobe: 6x2.4x2.3 cm. Heterogeneous with background diffuse nodularity. There are isoechoic nodules measuring up to 1.9cm. There is also a hypoechoic solid nodule posteriorly measuring 1.4cm.
Left lobe: 5.8x3.1x3 cm. Background diffuse nodularity. Solid isoechoic 2.2cm nodule with some internal vascularity, smaller nodule 1.4cm.
No swollen lymph nodes.
The suspicious nodule is 1.4cm on the right lobe, however, my whole thyroid is enlarged and the biopsy doctor/pathologist said it looks like lots of nodules growing in to eachother and that the 2.2cm nodule on the left side (which I can see when I swallow, right behind my carotid and jugular and above my collarbone) is actually 2.8cm (which is closer to what I measured myself using a tape measure on my neck where I saw it). I am currently awaiting blood tests for thyroid antibodies (Hashimoto's).
I was wondering if anyone had any suggestions as to whether I should have just a lobectomy or a total thyroidectomy (I'm not even sure if this is my choice, but I like to consider all my options and if I'll eventually need a TT it would be easier to do it in one go). If I had a totally functioning healthy thyroid with one suspicious nodule I would definitely do a lobectomy, but since my thyroid is already enlarged and function is livable but not great, and there's a chance I will need a TT eventually if the nodules continue to grow and start to obstruct airway or esophagus, and I'm thinking a TT would be a better option in this case.
Any thoughts or suggestions would be greatly appreciated.
@Sarahjogs - Do you mind sharing results of your detailed pathology after your surgery for the lobe which was removed ?
5 Comments
Hi Hero_m.
Update part 1:
I shared these pathology reports under the questions “Swollen lymph nodes found during lobectomy Hashi's related?” and “ongoing thyroid cancer saga - what to do next?”, but I thought I’d post it here as well so they are both in the same place and people can see what actually happened. I ended up getting the rest of my thyroid removed on August 23, 2018 (about 2 months later) – I ‘ll post that pathology below as a second comment here since this post is already going to be long, with an update on my treatment (which is hopefully done now except for getting to the right hormone level).
There are two different pathology reports for the right thyroid lobe. I have Hashimoto’s and my thyroid was very inflamed so my hospital sent it to the Cleveland Clinic for a second pathology report to make a final determination.
Here is the pathology of my right thyroid lobe (removed on June 21):
From my hospital:
Right level 6 lymph node excision:
- Lymph node with reactive changes. No neoplasm.
Right neck level 6, suspect parathyroid adenoma, excision:
- Lymph node with reactive changes.
- No parathyroid tissue identified.
Diagnosis: Lymph node, negative for neoplasm. No parathyroid identified.
Thyroid, right lobe, excision:
-Multinodular goiter, see note.
-Lymphocytic thyroiditis
-Follicular nodule with atypical features, final diagnosis pending outside consultation.
Note: Received fresh for frozen section- right thyroid lobe is a 26.4gm, 7.0x3.8x3.0 cm scabrous specimen … The specimen is sectioned serially to reveal multiple (about 8) tan-red nodules measuring up to 2.0x2.0x1.5cm. The largest nodule is submitted for frozen section diagnosis and a slide scraping is made. There is one encapsulated appearing glistening pale tan nodule, 1.1.x1.0x1.0cm. A representative section is submitted for frozen section diagnosis and a slide scraping is made. The remaining cut surfaces reveal a nodular red to pale red-tan cut surface. Representative sections are sequentially submitted from superior to inferior in eight cassettes.
Additional information: at least one of the nodules has atypical features suggestive of papillary carcinoma; however definitive features are not present. This case will be sent to Mayo Clinical Laboratories for outside consultation.
End of pathology from my hospital. I was sent to Cleveland Clinic for a second opinion (and not Mayo like the pathology report indicated, Cleveland is fine with me, I live in Ohio so that makes sense to send it there).
From Cleveland Clinic (the second opinion – we went with this pathology to make our next decision):
Right thyroid lobe, excision:
-Multiple nodules of papillary thyroid carcinoma:
- Encapsulated oncocytic variant of papillary thyroid carcinoma, 1.1 cm.
- Noninvasive encapsulated follicular variant of papillary thyroid carcinoma, 0.9cm.
- Oncocytic follicular variant of papillary thyroid carcinoma, 0.9cm.
-Chronic lymphocytic thyroiditis with multinodular hyperplasia
-No parathyroid gland tissue seen.
Right level 6 lymph node excision:
- One lymph node, negative for metastasis.
Right neck level 6, possible parathyroid, excision:
- Lymph node, negative for metastasis.
-No parathyroid gland tissue identified.
Comment
Thank you for sending this challenging case in consultation.
The thyroid shows a background of chronic lymphocytic thyroiditis and nodular hyperplastic changes with background variable nonspecific cytologic atypia. Sections show three distinct nodules with diagnostic nuclear features of papillary thyroid carcinoma such as crowding, elongation and enlargement, irregular nuclear folds, pallor and nuclear grooves. One nodule (well seen on slides B4 and B5) measures 1.1cm microscopically. This nodule shows an oncocytic follicular neoplasm with pronounced nuclear features of papillary thyroid carcinoma, dense colloid, and a partially infiltrative border. This nodule is located adjacent to an oncocytic neoplasm with solid, follicular and papillary architecture, a thick capsule and nuclear features diagnostic of papillary thyroid carcinoma. Dense colloid is seen. The capsule on this nodule shows distinct linear/columnar interruptions in the capsule that surround the neoplasm. Because the tumor intrusions on the capsule do not penetrate all the way through it, I am unable to classify these as true capsular invasion. Also, the shape and configuration of these capsular foci raise consideration of biopsy/fine-needle aspiration effect. A third nodule, best seen on slide B3, shows a noninvasive encapsulated follicular variant of papillary thyroid carcinoma, microscopically measuring 0.9cm. This nodule shows rare true papillae. None of these nodules are associating with angiolymphatic invasion or perithyroidal tissue invasion, and they do not approximate the inked surface. Due to at least one exclusionary criteria for each nodule (e.g. size, true papillae, oncocytic changes, and infiltrative contour), these are not classified as NIFTP. I have also shown this case to my colleague on the Head and Neck service (named here), who agrees with this interpretation.
End of Cleveland Clinic pathology for the right thyroid lobe.
We weren’t expecting to find 3 separate nodules that were cancerous – if it had just been the one, my doctor would have left the remaining thyroid lobe and isthmus in my neck, but since 3 out of 8 were positive, we decided to just remove the remaining thyroid tissue, since I have multinodular goiter and the remaining thyroid tissue has just as many nodules and a high potential to have cancer (if not now, if I left it in there then probably over time would develop). I will post that pathology as the next comment to keep it separated.
Update part 1:
I shared these pathology reports under the questions “Swollen lymph nodes found during lobectomy Hashi's related?” and “ongoing thyroid cancer saga - what to do next?”, but I thought I’d post it here as well so they are both in the same place and people can see what actually happened. I ended up getting the rest of my thyroid removed on August 23, 2018 (about 2 months later) – I ‘ll post that pathology below as a second comment here since this post is already going to be long, with an update on my treatment (which is hopefully done now except for getting to the right hormone level).
There are two different pathology reports for the right thyroid lobe. I have Hashimoto’s and my thyroid was very inflamed so my hospital sent it to the Cleveland Clinic for a second pathology report to make a final determination.
Here is the pathology of my right thyroid lobe (removed on June 21):
From my hospital:
Right level 6 lymph node excision:
- Lymph node with reactive changes. No neoplasm.
Right neck level 6, suspect parathyroid adenoma, excision:
- Lymph node with reactive changes.
- No parathyroid tissue identified.
Diagnosis: Lymph node, negative for neoplasm. No parathyroid identified.
Thyroid, right lobe, excision:
-Multinodular goiter, see note.
-Lymphocytic thyroiditis
-Follicular nodule with atypical features, final diagnosis pending outside consultation.
Note: Received fresh for frozen section- right thyroid lobe is a 26.4gm, 7.0x3.8x3.0 cm scabrous specimen … The specimen is sectioned serially to reveal multiple (about 8) tan-red nodules measuring up to 2.0x2.0x1.5cm. The largest nodule is submitted for frozen section diagnosis and a slide scraping is made. There is one encapsulated appearing glistening pale tan nodule, 1.1.x1.0x1.0cm. A representative section is submitted for frozen section diagnosis and a slide scraping is made. The remaining cut surfaces reveal a nodular red to pale red-tan cut surface. Representative sections are sequentially submitted from superior to inferior in eight cassettes.
Additional information: at least one of the nodules has atypical features suggestive of papillary carcinoma; however definitive features are not present. This case will be sent to Mayo Clinical Laboratories for outside consultation.
End of pathology from my hospital. I was sent to Cleveland Clinic for a second opinion (and not Mayo like the pathology report indicated, Cleveland is fine with me, I live in Ohio so that makes sense to send it there).
From Cleveland Clinic (the second opinion – we went with this pathology to make our next decision):
Right thyroid lobe, excision:
-Multiple nodules of papillary thyroid carcinoma:
- Encapsulated oncocytic variant of papillary thyroid carcinoma, 1.1 cm.
- Noninvasive encapsulated follicular variant of papillary thyroid carcinoma, 0.9cm.
- Oncocytic follicular variant of papillary thyroid carcinoma, 0.9cm.
-Chronic lymphocytic thyroiditis with multinodular hyperplasia
-No parathyroid gland tissue seen.
Right level 6 lymph node excision:
- One lymph node, negative for metastasis.
Right neck level 6, possible parathyroid, excision:
- Lymph node, negative for metastasis.
-No parathyroid gland tissue identified.
Comment
Thank you for sending this challenging case in consultation.
The thyroid shows a background of chronic lymphocytic thyroiditis and nodular hyperplastic changes with background variable nonspecific cytologic atypia. Sections show three distinct nodules with diagnostic nuclear features of papillary thyroid carcinoma such as crowding, elongation and enlargement, irregular nuclear folds, pallor and nuclear grooves. One nodule (well seen on slides B4 and B5) measures 1.1cm microscopically. This nodule shows an oncocytic follicular neoplasm with pronounced nuclear features of papillary thyroid carcinoma, dense colloid, and a partially infiltrative border. This nodule is located adjacent to an oncocytic neoplasm with solid, follicular and papillary architecture, a thick capsule and nuclear features diagnostic of papillary thyroid carcinoma. Dense colloid is seen. The capsule on this nodule shows distinct linear/columnar interruptions in the capsule that surround the neoplasm. Because the tumor intrusions on the capsule do not penetrate all the way through it, I am unable to classify these as true capsular invasion. Also, the shape and configuration of these capsular foci raise consideration of biopsy/fine-needle aspiration effect. A third nodule, best seen on slide B3, shows a noninvasive encapsulated follicular variant of papillary thyroid carcinoma, microscopically measuring 0.9cm. This nodule shows rare true papillae. None of these nodules are associating with angiolymphatic invasion or perithyroidal tissue invasion, and they do not approximate the inked surface. Due to at least one exclusionary criteria for each nodule (e.g. size, true papillae, oncocytic changes, and infiltrative contour), these are not classified as NIFTP. I have also shown this case to my colleague on the Head and Neck service (named here), who agrees with this interpretation.
End of Cleveland Clinic pathology for the right thyroid lobe.
We weren’t expecting to find 3 separate nodules that were cancerous – if it had just been the one, my doctor would have left the remaining thyroid lobe and isthmus in my neck, but since 3 out of 8 were positive, we decided to just remove the remaining thyroid tissue, since I have multinodular goiter and the remaining thyroid tissue has just as many nodules and a high potential to have cancer (if not now, if I left it in there then probably over time would develop). I will post that pathology as the next comment to keep it separated.
Update part 2:
On August 23, 2018, I had my remaining left thyroid lobe, isthmus, and a total of 11 lymph nodes removed. Because of Hashimoto’s, there are a lot of swollen lymph nodes in my neck, and after the first diagnosis my doctor wanted to make sure they were cancer free.
This is the pathology report from my hospital. We didn’t send it off for a second opinion this time (and no cancer on the left side, so that’s good news!).
Specimens:
A.) Thyroid, left thyroid lobe – short superior, long isthmus
B.) -lymph node left level six lymph node
Pre-op Diagnosis/Post-op Diagnosis: Malignant neoplasm of thyroid gland.
A. Thyroid, Left Lobe, Lobectomy:
-Thyroid with Hashimoto’s thyroiditis and adenomatous nodules
-Three lymph nodes negative for malignancy (0/3)
B. Lymph node, left level 6, excision:
-Eight lymph nodes negative for malignancy (0/8)
A. Sections of the thyroid demonstrate background Hashimoto’s thyroiditis with chronic inflammation and Hurthle cell change. The nodular thyroid demonstrates expression for CK19 and CD56 and is negative for HBME-1 and BRAF. There are three lymph nodes negative for malignancy.
B. Sections demonstrate eight lymph nodels negative for malignancy (0/8).
A. Left thyroid lobe: Received fresh and transferred into formalin is a 25 gm left thyroid lobe oriented by two sutures as indicated above. The specimen measures 5.5x4.5x2.6cm in overall dimensions. The anterior surface is marked with blue ink, and the posterior surface is marked with black ink. The isthmus is marked green. The outer surface of the thyroid gland appears multinodular and dark red. The isthmus is sectioned from superior towards inferior, and the superior half of the isthmus is submitted in cassette #1 and inferior half submitted in cassette #2. The nodular portions of thyroid range from 0.7cm to approximately 2.2 cm in diameter. A discrete lesion is not grossly identified. Representative sections are submitted from superior towards inferior representing approximately every other section.
B. Left level 6 lymph node:
Received fresh is a 3.7 X 1.5 X 0.7 cm portion of lobulated yellow adipose tissue containing multiple lymph nodes. Eight possible lymph nodes ranging from 0.4 to 1.6 cm in greatest dimensions are recovered.
End of pathology report.
The conclusion from this report is that the left lobe is negative for cancer (according to my ENT). I agree with this assessment since they did not see any discrete lesions, just multinodular tissue, Hurthle cell changes is common in Hashimoto’s. No lymph nodes were positive for cancer, which is good news.
My pathology reports seem very involved, but I has chronic, untreated Hashimoto's with multinodular goiter with lots of inflammation, so it makes sense there are a lot of nodules, a lot of swollen lymph nodes (and apparently 3 lymph nodes were stuck to my left thyroid lobe).
I’ll add another comment with how I am doing now/what treatment I am receiving.
On August 23, 2018, I had my remaining left thyroid lobe, isthmus, and a total of 11 lymph nodes removed. Because of Hashimoto’s, there are a lot of swollen lymph nodes in my neck, and after the first diagnosis my doctor wanted to make sure they were cancer free.
This is the pathology report from my hospital. We didn’t send it off for a second opinion this time (and no cancer on the left side, so that’s good news!).
Specimens:
A.) Thyroid, left thyroid lobe – short superior, long isthmus
B.) -lymph node left level six lymph node
Pre-op Diagnosis/Post-op Diagnosis: Malignant neoplasm of thyroid gland.
A. Thyroid, Left Lobe, Lobectomy:
-Thyroid with Hashimoto’s thyroiditis and adenomatous nodules
-Three lymph nodes negative for malignancy (0/3)
B. Lymph node, left level 6, excision:
-Eight lymph nodes negative for malignancy (0/8)
A. Sections of the thyroid demonstrate background Hashimoto’s thyroiditis with chronic inflammation and Hurthle cell change. The nodular thyroid demonstrates expression for CK19 and CD56 and is negative for HBME-1 and BRAF. There are three lymph nodes negative for malignancy.
B. Sections demonstrate eight lymph nodels negative for malignancy (0/8).
A. Left thyroid lobe: Received fresh and transferred into formalin is a 25 gm left thyroid lobe oriented by two sutures as indicated above. The specimen measures 5.5x4.5x2.6cm in overall dimensions. The anterior surface is marked with blue ink, and the posterior surface is marked with black ink. The isthmus is marked green. The outer surface of the thyroid gland appears multinodular and dark red. The isthmus is sectioned from superior towards inferior, and the superior half of the isthmus is submitted in cassette #1 and inferior half submitted in cassette #2. The nodular portions of thyroid range from 0.7cm to approximately 2.2 cm in diameter. A discrete lesion is not grossly identified. Representative sections are submitted from superior towards inferior representing approximately every other section.
B. Left level 6 lymph node:
Received fresh is a 3.7 X 1.5 X 0.7 cm portion of lobulated yellow adipose tissue containing multiple lymph nodes. Eight possible lymph nodes ranging from 0.4 to 1.6 cm in greatest dimensions are recovered.
End of pathology report.
The conclusion from this report is that the left lobe is negative for cancer (according to my ENT). I agree with this assessment since they did not see any discrete lesions, just multinodular tissue, Hurthle cell changes is common in Hashimoto’s. No lymph nodes were positive for cancer, which is good news.
My pathology reports seem very involved, but I has chronic, untreated Hashimoto's with multinodular goiter with lots of inflammation, so it makes sense there are a lot of nodules, a lot of swollen lymph nodes (and apparently 3 lymph nodes were stuck to my left thyroid lobe).
I’ll add another comment with how I am doing now/what treatment I am receiving.
Update part 3:
Thyroid hormone levels: My TSH was around a 7 four weeks after my first surgery (up from 3.44 in March, which isn’t great because I already had hypo symptoms at that level). My doctor started my on 25 mcg levothyroxine 3 weeks before the second surgery, but I’m not sure this was working all that well because my resting heart rate plummeted to a new low of 48 bpm the week before the second surgery. (I do a lot of endurance running, and normally my resting heart fluctuates between 51- 60ish from day to day, which I believe is a combination of chronically having slight hypothyroidism and from the endurance training but anywhere in the 40s is a new low for me). After the second surgery, my ENT/surgeon put me on 125 mcg levothyroxine, but indicated she thought I would need Radioactive Iodine (RAI) treatments because multiple-foci of cancer were found in my right lobe (first surgery). I had to wait until October 18th to meet with an endocrinologist who will “treat” the cancer and would take over my hormone situation, and in the mean-time my TSH went up to 16.43 on September 18th (increased to 137.5 mcg/day), and was still high (12.83 on October 10th) so I’m now at 167.5 mcg day – have been having a lot of hypo symptoms, but I’m back to jogging just about every day and feeling a lot better after the second surgery. They also measure T4 free, and mine was in the lower part of the range (1.20 range 0.8-1.8 on Sept. 18, up to 1.24 range 0.8-1.8 on Oct.10).
My biggest hypo symptoms right now are I still feel really tired in the afternoons, and I have had hypo menstrual symptoms for years, which were really, really bad when my TSH was 16.43 but now are back to their normal level of just being pretty annoying. I also have noticed an increase in dry skin and hair falling out (it’s maybe 2-3 times the usual amount falling out, so nothing to worry about at this point), and I continue to have a lot of mild hypo symptoms that I have had for years including: insomnia/interrupted sleep, cold intolerance, coarse hair, and a slow heart rate. These symptoms I’ve had for so long, they don’t really bother me but are probably hypo related. My name here – Sarahjogs -- comes from the fact that I do a lot of running, and I am happy that after two surgeries two months apart, I’m back to my normal running schedule (which for me is running pretty much every day and doing a long run once a week – it helps with my anxiety issues, and I think it has helped to keep my metabolism up and is forcing my body to keep burning calories, plus it makes me feel more like myself). Last week I ran 14 miles for my long run - the first time I have gone that far since my first trip to the doctor's for my visible nodules on my neck in March 2018, and did a total of 58 miles, which is a whole lot even for me. I've slowly worked up to that distance after the surgeries, and my legs feel better than ever getting a lot of miles on them. Can you have hypo symptoms and fatigue and still run a lot? (I have fatigue most afternoons, but I run in the mornings and it makes me feel better throughout the day.)
Because I have Hashimoto’s, my endocrinologist can’t use my antibodies to determine if I need RAI treatment, but because the three cancers found were small and encapsulated, he doesn’t think I will need RAI treatment (usually if you have one small, encapsulated cancer nodule of 1cm, they don’t treat with RAI, but if you have multiple foci they will usually treat – I personally do not think the cancer spread outside my thyroid and I’m fine not treating with RAI). We are doing some sort of special blood test that he uses with people who have Hashimoto’s to make a final decision about the RAI in three more weeks time. So hopefully my treatment is done with just the two surgeries, but if I need RAI, I will do that.
Now that I know what is going on, I’m so less stressed out about the whole thing, even though it is not the diagnosis I wanted to get. Do I wish I had the whole thyroid out in one surgery? Yes, but hindsight is 20/20 and my surgeon was trying to keep a partially functioning thyroid since I will now need thyroid hormone for the rest of my life. I’m 38, and my grandmother had her thyroid removed when she was 47 and lived at least another 40 years, so I'm not to worried, but it already seems challenging to get it at the right level.
My recovery after my second surgery was so much better than after the first – my doctor kept saying there was a lot of inflammation in the whole neck compartment (thyroid, lymph nodes, etc.), so after the whole thyroid was gone, I think my neck is a lot happier. After the first surgery, I had some swelling above this incision site for months, but after the second surgery, the steristrips fell off after 2 weeks and the scar is healing great with almost no swelling, much better than after the first surgery. Also, so much less pain in general after the second surgery – not sure if it is because a lot of tissue was still healing and my neck compartment “opened right up” in the second surgery, or if it’s because the inflamed thyroid was gone that I had less pain.
So that’s where I am now. I am still unsure about RAI but leaning towards no treatment at the moment, and trying to get my thyroid hormone at the right level. Even with the hypo symptoms I have now, I think the healing is going well, I'm feeling great and it is nice to be on this side of the two surgeries.
Thyroid hormone levels: My TSH was around a 7 four weeks after my first surgery (up from 3.44 in March, which isn’t great because I already had hypo symptoms at that level). My doctor started my on 25 mcg levothyroxine 3 weeks before the second surgery, but I’m not sure this was working all that well because my resting heart rate plummeted to a new low of 48 bpm the week before the second surgery. (I do a lot of endurance running, and normally my resting heart fluctuates between 51- 60ish from day to day, which I believe is a combination of chronically having slight hypothyroidism and from the endurance training but anywhere in the 40s is a new low for me). After the second surgery, my ENT/surgeon put me on 125 mcg levothyroxine, but indicated she thought I would need Radioactive Iodine (RAI) treatments because multiple-foci of cancer were found in my right lobe (first surgery). I had to wait until October 18th to meet with an endocrinologist who will “treat” the cancer and would take over my hormone situation, and in the mean-time my TSH went up to 16.43 on September 18th (increased to 137.5 mcg/day), and was still high (12.83 on October 10th) so I’m now at 167.5 mcg day – have been having a lot of hypo symptoms, but I’m back to jogging just about every day and feeling a lot better after the second surgery. They also measure T4 free, and mine was in the lower part of the range (1.20 range 0.8-1.8 on Sept. 18, up to 1.24 range 0.8-1.8 on Oct.10).
My biggest hypo symptoms right now are I still feel really tired in the afternoons, and I have had hypo menstrual symptoms for years, which were really, really bad when my TSH was 16.43 but now are back to their normal level of just being pretty annoying. I also have noticed an increase in dry skin and hair falling out (it’s maybe 2-3 times the usual amount falling out, so nothing to worry about at this point), and I continue to have a lot of mild hypo symptoms that I have had for years including: insomnia/interrupted sleep, cold intolerance, coarse hair, and a slow heart rate. These symptoms I’ve had for so long, they don’t really bother me but are probably hypo related. My name here – Sarahjogs -- comes from the fact that I do a lot of running, and I am happy that after two surgeries two months apart, I’m back to my normal running schedule (which for me is running pretty much every day and doing a long run once a week – it helps with my anxiety issues, and I think it has helped to keep my metabolism up and is forcing my body to keep burning calories, plus it makes me feel more like myself). Last week I ran 14 miles for my long run - the first time I have gone that far since my first trip to the doctor's for my visible nodules on my neck in March 2018, and did a total of 58 miles, which is a whole lot even for me. I've slowly worked up to that distance after the surgeries, and my legs feel better than ever getting a lot of miles on them. Can you have hypo symptoms and fatigue and still run a lot? (I have fatigue most afternoons, but I run in the mornings and it makes me feel better throughout the day.)
Because I have Hashimoto’s, my endocrinologist can’t use my antibodies to determine if I need RAI treatment, but because the three cancers found were small and encapsulated, he doesn’t think I will need RAI treatment (usually if you have one small, encapsulated cancer nodule of 1cm, they don’t treat with RAI, but if you have multiple foci they will usually treat – I personally do not think the cancer spread outside my thyroid and I’m fine not treating with RAI). We are doing some sort of special blood test that he uses with people who have Hashimoto’s to make a final decision about the RAI in three more weeks time. So hopefully my treatment is done with just the two surgeries, but if I need RAI, I will do that.
Now that I know what is going on, I’m so less stressed out about the whole thing, even though it is not the diagnosis I wanted to get. Do I wish I had the whole thyroid out in one surgery? Yes, but hindsight is 20/20 and my surgeon was trying to keep a partially functioning thyroid since I will now need thyroid hormone for the rest of my life. I’m 38, and my grandmother had her thyroid removed when she was 47 and lived at least another 40 years, so I'm not to worried, but it already seems challenging to get it at the right level.
My recovery after my second surgery was so much better than after the first – my doctor kept saying there was a lot of inflammation in the whole neck compartment (thyroid, lymph nodes, etc.), so after the whole thyroid was gone, I think my neck is a lot happier. After the first surgery, I had some swelling above this incision site for months, but after the second surgery, the steristrips fell off after 2 weeks and the scar is healing great with almost no swelling, much better than after the first surgery. Also, so much less pain in general after the second surgery – not sure if it is because a lot of tissue was still healing and my neck compartment “opened right up” in the second surgery, or if it’s because the inflamed thyroid was gone that I had less pain.
So that’s where I am now. I am still unsure about RAI but leaning towards no treatment at the moment, and trying to get my thyroid hormone at the right level. Even with the hypo symptoms I have now, I think the healing is going well, I'm feeling great and it is nice to be on this side of the two surgeries.
As soon as cancer was diagnosed the thyroid should have been removed. Natural thyroid medications will help.
Synthetic versus natural....
Read many many stories of people who had their lives changed....Different forums on it.
Synthetic versus natural....
Read many many stories of people who had their lives changed....Different forums on it.
Hi Cdlewis,
I'm not sure what you mean by "as soon as cancer was diagnosed the thyroid should have been removed" - my cancer was diagnosed when my right thyroid lobe was removed, and as soon as it was out, the cancer was gone. We removed my left lobe because the odds were high that it might contain cancer. Fortunately, it didn't, but we could easily have taken a "wait and see" approach for another 6 months if that is what I had wanted. Most thyroid cancers are very slow growing, and even though three foci were found in my right lobe, they were all small (about 1cm or less), contained in the thyroid, and the cancer was removed with just surgery of the lobe that contained them. I was not concerned about waiting for another operation, and it gave my body a chance to heal a bit before going right back in.
I know you are trying to be helpful with advice, but in general, thyroid cancer is very slow growing and I'm the one who had the cancer and I don't think my ENT/surgeon did anything wrong by waiting. At the point where it was diagnosed, my main concern was to get the other side out "in case" it was cancerous, but papillary thyroid cancer is very different than other types of cancers and is not something I needed to rush off and do immediately. In fact, I learned I officially had "cancer" two weeks after my first surgery, scheduled my next surgery, then left the next day for a preplanned, amazing family reunion in Hawaii in between the two surgeries. Did I worry about cancer on that trip? Not really. Did I worry a little about the upcoming surgery because I'm not a big fan of being under anesthesia? Yes, a little. Actually I was a whole lot less worried about cancer on that trip than I was before the first surgery. Is this going to be true for everyone in a similar situation? Probably not. I am less anxious once I know more of the more details about a situation, and by the time I had my papillary thyroid cancer diagnosis, I also knew that the surgery where it was removed was probably the only treatment I needed for it, and that removing the other lobe was just another step in the pathway but prognosis is very good for someone my age.
As for what hormone supplement I should be taking... oh boy...
I have been on levothyroxine for 2 months now since the surgery. It takes time to build up to the right level in a body, and I have changed my dose twice since starting out at 125mcg the day after the surgery. I am now at 167.5mcg - my body probably should have responded better to 125mcg, but it does not surprise me that I need a higher dose. I've had mild hypo symptoms for years before discovering my Hashi's and nodules, and I do a lot of endurance running so maybe that is effecting how my body responds to the hormone (whether it is my own thyroid making it or it's coming from an outside source). What I do know is it takes time for a lot of people to get to the right dose, and there is no reason I should just switch to a natural hormone right now without giving levothyroxine a chance.
Additionally, I personally would prefer never to take Armour thyroid or other natural dessicated thyroid medications because I stopped eating mammals 22 years ago and would prefer not to take any porcine thyroid. (This is not a religious thing, I just like mammals and prefer not to eat them, I don't judge others but that is my preference for me. In a post-apocalyptic scenario where that was my only option, then yes, I would consider it, but right now I am happy taking my levothyroxine). I do know a lot of people on here take synthetic thyroid hormone and are fine, and a lot of people on here take natural hormone and are fine.
Anyway, I didn't post on here to complain about my cancer or symptoms. Someone asked for an update and I was happy to respond, and I am in a really good place right now with my thyroid cancer journey and I hope that comes across in the updates.
I'm not sure what you mean by "as soon as cancer was diagnosed the thyroid should have been removed" - my cancer was diagnosed when my right thyroid lobe was removed, and as soon as it was out, the cancer was gone. We removed my left lobe because the odds were high that it might contain cancer. Fortunately, it didn't, but we could easily have taken a "wait and see" approach for another 6 months if that is what I had wanted. Most thyroid cancers are very slow growing, and even though three foci were found in my right lobe, they were all small (about 1cm or less), contained in the thyroid, and the cancer was removed with just surgery of the lobe that contained them. I was not concerned about waiting for another operation, and it gave my body a chance to heal a bit before going right back in.
I know you are trying to be helpful with advice, but in general, thyroid cancer is very slow growing and I'm the one who had the cancer and I don't think my ENT/surgeon did anything wrong by waiting. At the point where it was diagnosed, my main concern was to get the other side out "in case" it was cancerous, but papillary thyroid cancer is very different than other types of cancers and is not something I needed to rush off and do immediately. In fact, I learned I officially had "cancer" two weeks after my first surgery, scheduled my next surgery, then left the next day for a preplanned, amazing family reunion in Hawaii in between the two surgeries. Did I worry about cancer on that trip? Not really. Did I worry a little about the upcoming surgery because I'm not a big fan of being under anesthesia? Yes, a little. Actually I was a whole lot less worried about cancer on that trip than I was before the first surgery. Is this going to be true for everyone in a similar situation? Probably not. I am less anxious once I know more of the more details about a situation, and by the time I had my papillary thyroid cancer diagnosis, I also knew that the surgery where it was removed was probably the only treatment I needed for it, and that removing the other lobe was just another step in the pathway but prognosis is very good for someone my age.
As for what hormone supplement I should be taking... oh boy...
I have been on levothyroxine for 2 months now since the surgery. It takes time to build up to the right level in a body, and I have changed my dose twice since starting out at 125mcg the day after the surgery. I am now at 167.5mcg - my body probably should have responded better to 125mcg, but it does not surprise me that I need a higher dose. I've had mild hypo symptoms for years before discovering my Hashi's and nodules, and I do a lot of endurance running so maybe that is effecting how my body responds to the hormone (whether it is my own thyroid making it or it's coming from an outside source). What I do know is it takes time for a lot of people to get to the right dose, and there is no reason I should just switch to a natural hormone right now without giving levothyroxine a chance.
Additionally, I personally would prefer never to take Armour thyroid or other natural dessicated thyroid medications because I stopped eating mammals 22 years ago and would prefer not to take any porcine thyroid. (This is not a religious thing, I just like mammals and prefer not to eat them, I don't judge others but that is my preference for me. In a post-apocalyptic scenario where that was my only option, then yes, I would consider it, but right now I am happy taking my levothyroxine). I do know a lot of people on here take synthetic thyroid hormone and are fine, and a lot of people on here take natural hormone and are fine.
Anyway, I didn't post on here to complain about my cancer or symptoms. Someone asked for an update and I was happy to respond, and I am in a really good place right now with my thyroid cancer journey and I hope that comes across in the updates.
Good news. Thanks for the update. Please keep in touch and let us know how you are doing.
Update:
I had my lobectomy today - so far so good. Doctor was going to have pathology do a quick look at nodule (20min?) during surgery and if it looked like cancer she would have done a total thyroidectomy (but I had just lobectomy, so that's good). Doctor told my mom that it will take about a week for full pathology, but even if it is cancer they probably won't do further treatment since nodule was small (1.3cm). (I'm guessing if it looks like it spread they would do more, but sounds like no lymph node swelling was noticed, and I'll ask about this at follow up in 8 days).
Check-in at hospital 7:30am, surgery was 10:30? - 12:30? and out of hospital by 2:30, so pretty happy to be home and no hospital stay. Feel pretty good except soreness in throat/swallowing food and a bit of pain in my neck (but taking meds to help with that and they are definitely helping!). Was worried I'd be very groggy/not totally with it, but so far I think I'm doing pretty well. Time to veg out on the couch.
I will post another update here when I get the full pathology report.
I had my lobectomy today - so far so good. Doctor was going to have pathology do a quick look at nodule (20min?) during surgery and if it looked like cancer she would have done a total thyroidectomy (but I had just lobectomy, so that's good). Doctor told my mom that it will take about a week for full pathology, but even if it is cancer they probably won't do further treatment since nodule was small (1.3cm). (I'm guessing if it looks like it spread they would do more, but sounds like no lymph node swelling was noticed, and I'll ask about this at follow up in 8 days).
Check-in at hospital 7:30am, surgery was 10:30? - 12:30? and out of hospital by 2:30, so pretty happy to be home and no hospital stay. Feel pretty good except soreness in throat/swallowing food and a bit of pain in my neck (but taking meds to help with that and they are definitely helping!). Was worried I'd be very groggy/not totally with it, but so far I think I'm doing pretty well. Time to veg out on the couch.
I will post another update here when I get the full pathology report.
Just for info what you will need most after the lobectomy is a good thyroid doctor that understands that hypothyroidism is "insufficient T3 effect in tissues throughout the body, due to inadequate supply of, or response to, thyroid hormone".
Adequate diagnosis and treatment must start with evaluation for symptoms that occur more frequently with hypothyroidism. If those are present, then the next step is confirmation with extended biochemical testing including: Free T4, Free T3, Reverse T3, cortisol, Vitamin D, B12 and ferritin. All are important in assuring adequate supply of, and response to, thyroid hormone at the cellular level. Don't accept that all is well if your TSH is within range, or if your thyroid hormone levels are in the lower half of their ranges, but you still have symptoms. Symptom relief typically requires Free T4 at mid-range, Free T3 in the upper third of its range, Reverse T3 in lower half of its range, optimal cortisol, Vitamin D at least 50 ng/mL, B12 in the upper part of its range, and ferritin at least 100.
Good thyroid doctors are hard to find. Being an Endo does not assure a good thyroid doctor. IF you are interested I have names of several doctors not too far from your location, that have been recommended by other thyroid patients.
Adequate diagnosis and treatment must start with evaluation for symptoms that occur more frequently with hypothyroidism. If those are present, then the next step is confirmation with extended biochemical testing including: Free T4, Free T3, Reverse T3, cortisol, Vitamin D, B12 and ferritin. All are important in assuring adequate supply of, and response to, thyroid hormone at the cellular level. Don't accept that all is well if your TSH is within range, or if your thyroid hormone levels are in the lower half of their ranges, but you still have symptoms. Symptom relief typically requires Free T4 at mid-range, Free T3 in the upper third of its range, Reverse T3 in lower half of its range, optimal cortisol, Vitamin D at least 50 ng/mL, B12 in the upper part of its range, and ferritin at least 100.
Good thyroid doctors are hard to find. Being an Endo does not assure a good thyroid doctor. IF you are interested I have names of several doctors not too far from your location, that have been recommended by other thyroid patients.
1 Comments
Ah thank you so much for this! I haven't had vitamins measured (just free T4, free T3, TSH and thyroid antibodies, and all those only once). As far as I understand it, Hashimoto's can involve fluctuating thyroid hormones and time of day is important when testing hormone levels (preferably in the morning, delaying thyroid hormone that morning if you are on it until after the test).
I don't need doctors names right now, but I may take you up on that offer once I have the surgery. I exercise quite frequently (several times a week) and I know exercise can influence thyroid function (often improving function/hormone production). My thyroid is clearly struggling even with lots of exercise, so it is probably important to find someone who understands how this all works and can help find the best treatment strategy for me. (I've heard some people will skip a dose of thyroid hormone is they are exercising that day, but I exercise most days).
On a side note - if I skip 2-3 days of running, I start getting fidgety/anxious and very moody - and the crazy amount of running I do has always been more about keeping my mood stabilized than losing/maintaining weight - I'm wondering now if this has been a coping mechanism for hypothyroidism all along. Not looking forward to taking a 2 week break from running after the surgery (but I think I can still go for walks, so that should help a bit).
I don't need doctors names right now, but I may take you up on that offer once I have the surgery. I exercise quite frequently (several times a week) and I know exercise can influence thyroid function (often improving function/hormone production). My thyroid is clearly struggling even with lots of exercise, so it is probably important to find someone who understands how this all works and can help find the best treatment strategy for me. (I've heard some people will skip a dose of thyroid hormone is they are exercising that day, but I exercise most days).
On a side note - if I skip 2-3 days of running, I start getting fidgety/anxious and very moody - and the crazy amount of running I do has always been more about keeping my mood stabilized than losing/maintaining weight - I'm wondering now if this has been a coping mechanism for hypothyroidism all along. Not looking forward to taking a 2 week break from running after the surgery (but I think I can still go for walks, so that should help a bit).
From an online source, "For patients undergoing partial thyroid surgery who previously did not require a thyroid pill, there is a one in four chance that the remaining thyroid gland will produce enough hormone to meet the needs of the body. " Whether "meeting the needs" means adequate Free T4 and Free T# levels to prevent symptoms , or whether it means just producing enough FT4 and FT3 to bring TSH within range is quite different situations. From that info the probability of needing replacement thyroid hormone is 75%. I would expect that the presence of Hashi's increases that probability. Your Ent probably thinks the probability is lower because he/she doesn't treat a hypo patient as long as TSH/ FT4/ FT3 are in range. That frequently doesn't work, as you can already testify, with your test results in the low end of their range, but many symptoms. Also, is the Ent taking into account that the remaining thyroid tissue has already been under attack by the Hashi's antibodies?
As for changing your diet in the hope of reducing Hashi's symptoms, Hashi's doesn't cause those symptoms directly. The Hashi's antibodies just continually attack and diminish the function of the thyroid gland. Inadequate levels of thyroid hormone along with other deficiencies that can affect the response to thyroid hormone at the cellular level, causes the hypo symptoms. As far as I can determine, there is no scientific proof, only anecdotal info, that diet changes such as going completely gluten free positively affects the Hashi's attack. And even it were so, any tissue already destroyed is not regenerated, thus increasing the likelihood of inadequate output of thyroid hormone from your remaining thyroid tissue.
So to prevent all those hypo symptoms, I think the likelihood is that you will be on some dosage of replacement thyroid hormone regardless of your decision about lobectomy/TT.
I just wanted to make sure you considered the different possibilities.
As for changing your diet in the hope of reducing Hashi's symptoms, Hashi's doesn't cause those symptoms directly. The Hashi's antibodies just continually attack and diminish the function of the thyroid gland. Inadequate levels of thyroid hormone along with other deficiencies that can affect the response to thyroid hormone at the cellular level, causes the hypo symptoms. As far as I can determine, there is no scientific proof, only anecdotal info, that diet changes such as going completely gluten free positively affects the Hashi's attack. And even it were so, any tissue already destroyed is not regenerated, thus increasing the likelihood of inadequate output of thyroid hormone from your remaining thyroid tissue.
So to prevent all those hypo symptoms, I think the likelihood is that you will be on some dosage of replacement thyroid hormone regardless of your decision about lobectomy/TT.
I just wanted to make sure you considered the different possibilities.
1 Comments
Gimel,
Thanks for all the info and help. I do think I will need hormone after the surgery (and it would probably help with my symptoms now).
I got the impression from the doctor that she doesn't realize Hurthle cell cancer is different from follicular cancer and is often much more difficult to treat. She made a "thyroid cancer is a good cancer" comment, I guess not to scare me, but I'd just prefer doctors to be honest and realistic about my situation. There's a possibility that I do have Hurthle cell cancer, but the risk is pretty low so I'm trying to balance maybe having to do further cancer treatment with the expectation that hopefully after the surgery, my cancer worries will be abated and I can move forward on getting treatment for hypo symptoms and Hashi's.
I don't think diet will solve my Hashi's problem - my brother's girlfriend has Hashi's, and she says with a gluten free diet her antibody levels went down to zero. I'm thinking maybe she has another autoimmune problem that causes an increase in thyroid antibodies and isn't in quite the same situation as me. (My brother and his girlfriend keep pushing me to do a "paleo" diet - I'm not so sure eating mammals (which I would refuse to do anyway), and giving up milk, eggs, wheat, etc. would solve my problems. My diet comment was more the fact that if I keep half my thyroid, perhaps taking thyroid medication and changing my diet will help slow the growth of the gland - definitely soy and iodine seem to encourage thyroid growth.
I told my ENT that my thyroid is already sick and not producing enough hormone, and she said my levels are fine. Ridiculous, and I don't want to get in a fight with the doctor about this. Both appointments I've had with the ENT and also with a resident at the first appointment basically got a "your hormone levels are fine, so your symptoms aren't important or unrelated" response, which is so frustrating to me. At this point, I'm ok with either keeping half the thyroid or having the whole thing gone, and yes, cancer should be my number one priority, but I'd also like to get treatment for the hypo symptoms. My thyroid is large, I have Hashi's antibodies, and I have or have had tons of hypothyroidism symptoms over the years. My TSH was "fine" at 3.44, but I clearly have symptoms with my hormone levels "in range". I did an on-line test of symptoms ( http://thyroid-canada.com/lowthyroid.htm ), and it says over 50 points severe hypothyroidism , over 70 "hypothyroidism so bad that blood tests may be abnormal". Mine was 90, and my little sister who I forced to do it too since she has a lot of similar symptoms was around 50 (she has very low blood pressure, especially when she was pregnant, has fainting spells occasionally, and is frequently very tired in the afternoon, although she has 3 little boys to take care of so the tiredness might just be being a mom and not a hypo symptom).
My ENT doesn't care at all about the hypo symptoms or the Hashi's, so I think I will need to get help from either my PCP or an endocrinologist to help with my hypothyroidism. Do I wish my ENT understood the complex relationship of my nodules, goiter, Hashi's, and hormone function and would realize leaving half my thyroid is not going to be adequate for me without hormone treatment? Yes, of course I do.
At least now I know I have a hypothyroidism problem and will pursue a path that will help with the symptoms. I don't think whether I have half or all of my thyroid removed is going to matter that much to me at this point except a TT would force my ENT to treat the hypothyroidism. I can work with my PCP to come up with a better long term treatment strategy and aim for getting my levels in a better range for me. I think all people are different, and what is "fine" for some people can cause other people to have lots of symptoms and that a lot of the medical community just doesn't understand this.
I think I am happy with the idea of keeping half my thyroid (and reducing complication risk and recovery time) and pursuing treatment for the hypothyroidism.
Thanks for all the info and help. I do think I will need hormone after the surgery (and it would probably help with my symptoms now).
I got the impression from the doctor that she doesn't realize Hurthle cell cancer is different from follicular cancer and is often much more difficult to treat. She made a "thyroid cancer is a good cancer" comment, I guess not to scare me, but I'd just prefer doctors to be honest and realistic about my situation. There's a possibility that I do have Hurthle cell cancer, but the risk is pretty low so I'm trying to balance maybe having to do further cancer treatment with the expectation that hopefully after the surgery, my cancer worries will be abated and I can move forward on getting treatment for hypo symptoms and Hashi's.
I don't think diet will solve my Hashi's problem - my brother's girlfriend has Hashi's, and she says with a gluten free diet her antibody levels went down to zero. I'm thinking maybe she has another autoimmune problem that causes an increase in thyroid antibodies and isn't in quite the same situation as me. (My brother and his girlfriend keep pushing me to do a "paleo" diet - I'm not so sure eating mammals (which I would refuse to do anyway), and giving up milk, eggs, wheat, etc. would solve my problems. My diet comment was more the fact that if I keep half my thyroid, perhaps taking thyroid medication and changing my diet will help slow the growth of the gland - definitely soy and iodine seem to encourage thyroid growth.
I told my ENT that my thyroid is already sick and not producing enough hormone, and she said my levels are fine. Ridiculous, and I don't want to get in a fight with the doctor about this. Both appointments I've had with the ENT and also with a resident at the first appointment basically got a "your hormone levels are fine, so your symptoms aren't important or unrelated" response, which is so frustrating to me. At this point, I'm ok with either keeping half the thyroid or having the whole thing gone, and yes, cancer should be my number one priority, but I'd also like to get treatment for the hypo symptoms. My thyroid is large, I have Hashi's antibodies, and I have or have had tons of hypothyroidism symptoms over the years. My TSH was "fine" at 3.44, but I clearly have symptoms with my hormone levels "in range". I did an on-line test of symptoms ( http://thyroid-canada.com/lowthyroid.htm ), and it says over 50 points severe hypothyroidism , over 70 "hypothyroidism so bad that blood tests may be abnormal". Mine was 90, and my little sister who I forced to do it too since she has a lot of similar symptoms was around 50 (she has very low blood pressure, especially when she was pregnant, has fainting spells occasionally, and is frequently very tired in the afternoon, although she has 3 little boys to take care of so the tiredness might just be being a mom and not a hypo symptom).
My ENT doesn't care at all about the hypo symptoms or the Hashi's, so I think I will need to get help from either my PCP or an endocrinologist to help with my hypothyroidism. Do I wish my ENT understood the complex relationship of my nodules, goiter, Hashi's, and hormone function and would realize leaving half my thyroid is not going to be adequate for me without hormone treatment? Yes, of course I do.
At least now I know I have a hypothyroidism problem and will pursue a path that will help with the symptoms. I don't think whether I have half or all of my thyroid removed is going to matter that much to me at this point except a TT would force my ENT to treat the hypothyroidism. I can work with my PCP to come up with a better long term treatment strategy and aim for getting my levels in a better range for me. I think all people are different, and what is "fine" for some people can cause other people to have lots of symptoms and that a lot of the medical community just doesn't understand this.
I think I am happy with the idea of keeping half my thyroid (and reducing complication risk and recovery time) and pursuing treatment for the hypothyroidism.
Just to throw in another thought for you. If your whole thyroid gland has been unable to produce enough hormone to prevent you having hypo symptoms, why does the doctor think that the half remaining after surgery is going to be able to do so? Most likely you will need thyroid med after surgery, to keep your Free T4 and Free T3 in the upper half of their ranges and prevent symptoms. Taking thyroid med usually causes the pituitary to reduce the amount of TSH produced, thus creating less stimulation for the remaining thyroid gland tissue to produce natural thyroid hormone. Will the net result be that you require a full daily replacement amount of thyroid med?
With a lobectomy now, there is always the risk of further surgery in the future. Also, since you have Hashi's, won't the remaining half of your thyroid gland eventually be destroyed by the antibodies?. Either way won't you end up needing a full daily replacement amount of thyroid med? These are questions I think you should discuss with your doctor.
With a lobectomy now, there is always the risk of further surgery in the future. Also, since you have Hashi's, won't the remaining half of your thyroid gland eventually be destroyed by the antibodies?. Either way won't you end up needing a full daily replacement amount of thyroid med? These are questions I think you should discuss with your doctor.
1 Comments
Gimel,
I agree with you, and I did bring up these points during our meeting (about my thyroid already being enlarged and sick). I mentioned that I already have hypo symptoms, and that my thyroid is so large in the first place (my left lobe is 6cmx 3cm x3cm, which I believe is 5 to 10X the normal size by volume). I reminded the doctor that we had discussed doing either TT or lobectomy and that my thyroid is already sick, but she was dead set on doing the lobectomy (even if it means future surgery). I believe she wants to minimize the risk of complications and since I am young(ish), she doesn't want to take out the whole thing unless she needs to.
I am ok with doing just the lobectomy because the reason for the surgery is to remove a potential cancerous nodule, which hopefully is not cancerous. If it is cancerous then the whole thing needs to come out which would mean a second surgery, and I will need follow-up ultrasounds indefinitely, and if it keeps growing I will probably need another surgery. If leaving it in just means ultrasounds once a year, that's probably fine. Risks for parathyroid damage are probably higher for me with the TT since my thyroid is very lumpy, and I think my doctor wants to minimize risk of complication, etc.
What I am not ok with is waiting until things get a whole lot worse before going on thyroid hormone. I still think I need a better strategy of treating my hypo symptoms and not just waiting until things get a lot worse than they already are. I think my PCP would be willing to put me on thyroid hormone to see if it helps with the hypo symptoms even though my endo is definitely not. I do not think half my thyroid is going to make enough hormone... also, I've only ever had one thyroid hormone test done, and definitely have Hashi's, so I think it's impossible at this point to say my thyroid hormone is fine when Hashi's can cause hormone levels to fluctuate.
I think my risk of it actually being cancer is pretty low - average size of cancer for Hurthle cell is 4cm, my nodule is 1.3cm, average age for Hurthle cell cancer is 65 (10 yrs older than follicular), I'm 37, percentage of positive/50% risk on the Afirma test (which I had) for Hurthle cell that actually ends up being cancer is something like 15-20%. My doctor told me today my risk that it is cancer is a little more than 50% - I think she's going by the Afirma result and it's nowhere near that high, but if she thinks that's the risk than why just do a lobectomy if there is a 50% chance the other half has to come out? I'm optimistic that it is not cancer and I'm not sure why all my doctors keep telling me the risk is 50% - unless they are looking solely at follicular neoplasms risks when you get a ~50% suspicious result from Afirma. With Hurthle cell the cells have already undergone some sort of change so 60-70% come back suspicious but only around 16% are cancer.
Is it worth pushing to get the whole thing taken out? I kind of tried that today and my doctor was pretty adamant that lobectomy was a better choice for me at this point, and I've been waivering myself with whether I should do partial or total so when she pushed for lobectomy, I wasn't too upset/surprised, just not what I was expecting to hear and now I have to reconcile that with a list of pros/cons I have. As I said, I think I am ok with doing the lobectomy, but only if that can be combined with getting some treatment for my Hashi's/hypo symptoms to try to prevent further thyroid growth and treat my symptoms.
Anyway lots to think about. I might contact my PCP in the next couple of days to get her opinion. She was more than willing to treat my hypo symptoms if my test came back positive for Hashimoto's (which it did), and while I have symptoms I think they are probably mild compared to a lot of people and I can wait until after the surgery to start hormone replacement (just not too long). My ENT doesn't seem to care or understand that with Hashi's you can have fluctuating hormone levels. (My ENT was also reluctant to do the test for Hashi's in the first place, and told me if I did have it, it didn't matter because they wouldn't treat it unless my hormone levels were out of the normal range). I believe my ENT is a good thyroid surgeon and I would like to stick with her, but I think I'll need some PCP help to get hormone treatment. I didn't want to get in a big argument at the doctor's office and I think I probably know more than most patients she deals with, so I tried to keep it professional and listened to what she had to say but I don't necessarily agree about the not taking any hormone.
I don't know why my ENT is so reluctant to treat hypo symptoms when I very clearly have a thyroid problem, but this sounds like it's very common with what I've read from other people posting on here. Are doctors worried people want to take thyroid hormone when they don't need it to "lose weight" or abuse it? I think getting help for my hypothyroidism would help with the horrible menstrual symptoms I deal with every month and probably help with my anxiety as well, now that I know I have a problem I can do something about it.
I guess one benefit of keeping half my thyroid is that I would have an opportunity to see if changes to my diet can help reduce the Hashi's symptoms and give my remaining half a chance to produce hormone - I just learned I have Hashi's at the end of April so haven't modified my diet too much at this point except to avoid soy and iodine, and reduced my gluten intake.
I agree with you, and I did bring up these points during our meeting (about my thyroid already being enlarged and sick). I mentioned that I already have hypo symptoms, and that my thyroid is so large in the first place (my left lobe is 6cmx 3cm x3cm, which I believe is 5 to 10X the normal size by volume). I reminded the doctor that we had discussed doing either TT or lobectomy and that my thyroid is already sick, but she was dead set on doing the lobectomy (even if it means future surgery). I believe she wants to minimize the risk of complications and since I am young(ish), she doesn't want to take out the whole thing unless she needs to.
I am ok with doing just the lobectomy because the reason for the surgery is to remove a potential cancerous nodule, which hopefully is not cancerous. If it is cancerous then the whole thing needs to come out which would mean a second surgery, and I will need follow-up ultrasounds indefinitely, and if it keeps growing I will probably need another surgery. If leaving it in just means ultrasounds once a year, that's probably fine. Risks for parathyroid damage are probably higher for me with the TT since my thyroid is very lumpy, and I think my doctor wants to minimize risk of complication, etc.
What I am not ok with is waiting until things get a whole lot worse before going on thyroid hormone. I still think I need a better strategy of treating my hypo symptoms and not just waiting until things get a lot worse than they already are. I think my PCP would be willing to put me on thyroid hormone to see if it helps with the hypo symptoms even though my endo is definitely not. I do not think half my thyroid is going to make enough hormone... also, I've only ever had one thyroid hormone test done, and definitely have Hashi's, so I think it's impossible at this point to say my thyroid hormone is fine when Hashi's can cause hormone levels to fluctuate.
I think my risk of it actually being cancer is pretty low - average size of cancer for Hurthle cell is 4cm, my nodule is 1.3cm, average age for Hurthle cell cancer is 65 (10 yrs older than follicular), I'm 37, percentage of positive/50% risk on the Afirma test (which I had) for Hurthle cell that actually ends up being cancer is something like 15-20%. My doctor told me today my risk that it is cancer is a little more than 50% - I think she's going by the Afirma result and it's nowhere near that high, but if she thinks that's the risk than why just do a lobectomy if there is a 50% chance the other half has to come out? I'm optimistic that it is not cancer and I'm not sure why all my doctors keep telling me the risk is 50% - unless they are looking solely at follicular neoplasms risks when you get a ~50% suspicious result from Afirma. With Hurthle cell the cells have already undergone some sort of change so 60-70% come back suspicious but only around 16% are cancer.
Is it worth pushing to get the whole thing taken out? I kind of tried that today and my doctor was pretty adamant that lobectomy was a better choice for me at this point, and I've been waivering myself with whether I should do partial or total so when she pushed for lobectomy, I wasn't too upset/surprised, just not what I was expecting to hear and now I have to reconcile that with a list of pros/cons I have. As I said, I think I am ok with doing the lobectomy, but only if that can be combined with getting some treatment for my Hashi's/hypo symptoms to try to prevent further thyroid growth and treat my symptoms.
Anyway lots to think about. I might contact my PCP in the next couple of days to get her opinion. She was more than willing to treat my hypo symptoms if my test came back positive for Hashimoto's (which it did), and while I have symptoms I think they are probably mild compared to a lot of people and I can wait until after the surgery to start hormone replacement (just not too long). My ENT doesn't seem to care or understand that with Hashi's you can have fluctuating hormone levels. (My ENT was also reluctant to do the test for Hashi's in the first place, and told me if I did have it, it didn't matter because they wouldn't treat it unless my hormone levels were out of the normal range). I believe my ENT is a good thyroid surgeon and I would like to stick with her, but I think I'll need some PCP help to get hormone treatment. I didn't want to get in a big argument at the doctor's office and I think I probably know more than most patients she deals with, so I tried to keep it professional and listened to what she had to say but I don't necessarily agree about the not taking any hormone.
I don't know why my ENT is so reluctant to treat hypo symptoms when I very clearly have a thyroid problem, but this sounds like it's very common with what I've read from other people posting on here. Are doctors worried people want to take thyroid hormone when they don't need it to "lose weight" or abuse it? I think getting help for my hypothyroidism would help with the horrible menstrual symptoms I deal with every month and probably help with my anxiety as well, now that I know I have a problem I can do something about it.
I guess one benefit of keeping half my thyroid is that I would have an opportunity to see if changes to my diet can help reduce the Hashi's symptoms and give my remaining half a chance to produce hormone - I just learned I have Hashi's at the end of April so haven't modified my diet too much at this point except to avoid soy and iodine, and reduced my gluten intake.
Update:
I met with my ENT today for a pre-op appointment. The surgery is scheduled for June 21. She recommended a lobectomy and didn't really give me a choice as to lobectomy or total thyroidectomy (despite telling me that I would have a choice in a previous interaction).
I have been flip-flopping about this for some time - I was convinced TT was the way to go, but the idea of being 100% dependent on thyroid hormone for the rest of my life still makes me nervous. I know a lot of people do it and are completely fine, my grandmother was on it for 40 yrs so it's doable, but there's no going back once the entire thyroid is removed.
Benefits of the lobectomy:
Not being completely dependent on thyroid hormone.
Much lower risk of complication.
Faster recovery time, probably no overnight hospital stay (she said lobectomy = 2.5 hr once they move me to observation room).
Negatives for lobectomy:
My lumpy bumpy left lobe and isthmus that would remain will still need follow up ultrasounds every year, but no biopsy unless the nodule on the left grows "significantly" - all my nodules on the left were isoechoic on the ultrasound and the lumpy-bumpiness is probably related to Hashi's, so hopefully they won't quickly become "suspicious".
If it is cancer, that means another surgery.
My major concern with just doing the lobectomy is that my ENT thinks my enlarged/lumpy bumpy remaining left lobe will produce enough hormone that I won't need to supplement it, and I'm not so sure about this. I already have mild hypo symptoms, but my thyroid hormones on the one test I had were in "normal" ranges (TSH was 3.44, not out of range but not ideal). Anyway, I think my plan now is to get the surgery, make sure it is not cancer or treat it if it is, and then talk to my PCP about addressing the hypothyroidism symptoms/Hashimoto's.
My anxiety is much better about this now that I know what is going on and what the short term/long term plan is for dealing with the nodules. I also have lucked out and my doctor frequently performs thyroid surgeries (once a week/multiple times a week), has low complication rates, and knows to look for central compartment lymph nodes in case it is cancer), so I feel like I am in good hands.
I met with my ENT today for a pre-op appointment. The surgery is scheduled for June 21. She recommended a lobectomy and didn't really give me a choice as to lobectomy or total thyroidectomy (despite telling me that I would have a choice in a previous interaction).
I have been flip-flopping about this for some time - I was convinced TT was the way to go, but the idea of being 100% dependent on thyroid hormone for the rest of my life still makes me nervous. I know a lot of people do it and are completely fine, my grandmother was on it for 40 yrs so it's doable, but there's no going back once the entire thyroid is removed.
Benefits of the lobectomy:
Not being completely dependent on thyroid hormone.
Much lower risk of complication.
Faster recovery time, probably no overnight hospital stay (she said lobectomy = 2.5 hr once they move me to observation room).
Negatives for lobectomy:
My lumpy bumpy left lobe and isthmus that would remain will still need follow up ultrasounds every year, but no biopsy unless the nodule on the left grows "significantly" - all my nodules on the left were isoechoic on the ultrasound and the lumpy-bumpiness is probably related to Hashi's, so hopefully they won't quickly become "suspicious".
If it is cancer, that means another surgery.
My major concern with just doing the lobectomy is that my ENT thinks my enlarged/lumpy bumpy remaining left lobe will produce enough hormone that I won't need to supplement it, and I'm not so sure about this. I already have mild hypo symptoms, but my thyroid hormones on the one test I had were in "normal" ranges (TSH was 3.44, not out of range but not ideal). Anyway, I think my plan now is to get the surgery, make sure it is not cancer or treat it if it is, and then talk to my PCP about addressing the hypothyroidism symptoms/Hashimoto's.
My anxiety is much better about this now that I know what is going on and what the short term/long term plan is for dealing with the nodules. I also have lucked out and my doctor frequently performs thyroid surgeries (once a week/multiple times a week), has low complication rates, and knows to look for central compartment lymph nodes in case it is cancer), so I feel like I am in good hands.
I have been in a similar situation in regards to surgery/cancer. In my case however it was a 25 cm ovarian cyst! I was told by two doctors I'd very likely have cancer and I'd have a 16 cm scar down my belly removing the cyst! O_o
My third doctor/surgeon said cancer not likely based on CA125 (like you I researched my condition/labs so I knew this! lol) and he agreed he could do keyhole surgery with possible incision on bikini line (which did happen but can't see the scar :).
As much as I was sure I did not have cancer I moved surgery forward...just in case. Cancer is not a nice word! I was so ill too so it was a relief to get that cyst out! Result was benign.
So the results from the thyroid studies shows low risk, but that word cancer makes you think twice...even if it's low risk! If you have the whole thyroid removed and find there was no cancer then the consoling thought is you would need to be on medication anyway. In some cases they had perfectly healthy thyroid glands that were removed! An example of that was the president of Argentina!
My third doctor/surgeon said cancer not likely based on CA125 (like you I researched my condition/labs so I knew this! lol) and he agreed he could do keyhole surgery with possible incision on bikini line (which did happen but can't see the scar :).
As much as I was sure I did not have cancer I moved surgery forward...just in case. Cancer is not a nice word! I was so ill too so it was a relief to get that cyst out! Result was benign.
So the results from the thyroid studies shows low risk, but that word cancer makes you think twice...even if it's low risk! If you have the whole thyroid removed and find there was no cancer then the consoling thought is you would need to be on medication anyway. In some cases they had perfectly healthy thyroid glands that were removed! An example of that was the president of Argentina!
This study is of interest.
Excerpts from the study: "Routine second-opinion cytopathology review of thyroid fine needle aspiration biopsies reduces diagnostic thyroidectomy"....
"Some centers have shown significant discordance when a second pathologist evaluates the same FNA biopsy."
"A second opinion improved FNA biopsy accuracy from 60% to 74%. Overall, second-opinion cytology of indeterminate FNA biopsies avoided diagnostic operation in 25% (32/129)."
Excerpts from the study: "Routine second-opinion cytopathology review of thyroid fine needle aspiration biopsies reduces diagnostic thyroidectomy"....
"Some centers have shown significant discordance when a second pathologist evaluates the same FNA biopsy."
"A second opinion improved FNA biopsy accuracy from 60% to 74%. Overall, second-opinion cytology of indeterminate FNA biopsies avoided diagnostic operation in 25% (32/129)."
6 Comments
I just found out today that I do have Hashimoto's thyroiditis. I keep flip flopping between just getting the surgery (if there is like a 25% chance of cancer I don't want to take that risk), but now that I know it's Hashimoto's, I've just found another study that says :
" In patients whose biopsies were read as being suspicious for Hurthle cell neoplasm, the rate of thyroid cancer was 25% in patients without Hashimoto’s thyroiditis, whereas it was 9.5% in patients with Hashimoto’s thyroiditis. While suggestive, these two rates were not significantly different."
https://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-4-issue-6/vol-4-issue-6-p-9-10/
The number of patients with Hashimoto's in that study is low (2 out of 21 had cancer, could easily have been 4/21 when working with small numbers of patients - so it's possible my risk is much higher than 10% but definitely something to consider) - I guess I need to do some more research since one study isn't going to push me in one direction or another.
I'm currently going down a rabbit hole now of looking at morbidity and mortality rates for thyroidectomy vs. lobectomy... I think it is a low rate anyway for someone my age (37), but definitely something to consider before getting the surgery, especially if the chance of it actually being cancer is quite low.
I contacted my ENT today to ask her what she recommends (lobectomy or total thyroidectomy) since I still do not know what she wants to do, and very gently slid in "Do you think I should have a second pathologist look at my slide? I like to consider all my options before having the surgery."
Thank you Red_Star for all your help - I was feeling pretty anxious when I heard I had to have the surgery/worried about cancer, but now the more I look into it, the lower my risk keeps going. That Afirma test though - for Hurthle Cell neoplasms it's basically <4% if it comes back benign, and ~50% for everything else, even if all evidence points to 80% of those with a ~50% risk are benign - not a great system if the only way of knowing for sure is lobectomy.
" In patients whose biopsies were read as being suspicious for Hurthle cell neoplasm, the rate of thyroid cancer was 25% in patients without Hashimoto’s thyroiditis, whereas it was 9.5% in patients with Hashimoto’s thyroiditis. While suggestive, these two rates were not significantly different."
https://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-4-issue-6/vol-4-issue-6-p-9-10/
The number of patients with Hashimoto's in that study is low (2 out of 21 had cancer, could easily have been 4/21 when working with small numbers of patients - so it's possible my risk is much higher than 10% but definitely something to consider) - I guess I need to do some more research since one study isn't going to push me in one direction or another.
I'm currently going down a rabbit hole now of looking at morbidity and mortality rates for thyroidectomy vs. lobectomy... I think it is a low rate anyway for someone my age (37), but definitely something to consider before getting the surgery, especially if the chance of it actually being cancer is quite low.
I contacted my ENT today to ask her what she recommends (lobectomy or total thyroidectomy) since I still do not know what she wants to do, and very gently slid in "Do you think I should have a second pathologist look at my slide? I like to consider all my options before having the surgery."
Thank you Red_Star for all your help - I was feeling pretty anxious when I heard I had to have the surgery/worried about cancer, but now the more I look into it, the lower my risk keeps going. That Afirma test though - for Hurthle Cell neoplasms it's basically <4% if it comes back benign, and ~50% for everything else, even if all evidence points to 80% of those with a ~50% risk are benign - not a great system if the only way of knowing for sure is lobectomy.
My ENT responded to my questions in record time (< 4hr :-) ). She says that at my appointment she will explain the procedures of lobectomy and TT, risks and benefits of each, and that the choice will be up to me. Right now I am leaning towards TT if I have to have the surgery (as I don't want to have to go back and have a second surgery if it is cancer, and my thyroid is not healthy as it is now and I will need thyroid hormone regardless of which surgery, and having to do follow-up ultrasounds on my very nodular left-side remaining thyroid (and nodular isthmus) for who knows how long does not sound like a good long term strategy to me).
As for a second opinion on the biopsy, she says the Afirma suspicious result is basically a second opinion on the biopsy. I realize Afirma is exceptionally poor at determining if Hurthle Cell neoplasms are benign, but it does confirm the original suspicious diagnosis. Will another biopsy change that outcome? I'm not sure.
I am now debating whether to get a second opinion from another ENT. From what we've discussed here, chances are low (~15-30%) that my Hurthle Cell neoplasm is actually cancer. Most people who have a suspicious for Hurthle cell neoplasm end up being diagnosed with Hurthle cell adenoma after surgical removal, which is not cancer. It is apparently impossible to tell the difference between adenoma and carcinoma without surgically removing the nodule. I'm not sure if leaving the nodule untreated and delaying the surgery would allow a benign adenoma to become malignant (the only difference is whether the cells are contained in a capsule (adenoma) vs. broken through and/or have blood vessel infiltration (carcinoma)). Do I really want to take that risk, or just go ahead and get it out now when I have the best chance of getting it before it becomes cancer and if it is already malignant I can get treatment for it as soon as possible and not constantly worry about a ticking-time bomb in my thyroid. I guess I will do some more research to find out what rate these benign Hurthle cell adenomas turn into cancer -- Hurthle Cell carcinoma tends to metastasize more than papillary carcinoma and is a lot harder to treat with radioactive iodine, so it is not something I'd want to wait and see on. I'm also very anxious about the possibility of cancer - will delaying surgery lead to increased and prolonged anxiety on my part, even if everything points towards adenoma? Definitely.
As for a second opinion on the biopsy, she says the Afirma suspicious result is basically a second opinion on the biopsy. I realize Afirma is exceptionally poor at determining if Hurthle Cell neoplasms are benign, but it does confirm the original suspicious diagnosis. Will another biopsy change that outcome? I'm not sure.
I am now debating whether to get a second opinion from another ENT. From what we've discussed here, chances are low (~15-30%) that my Hurthle Cell neoplasm is actually cancer. Most people who have a suspicious for Hurthle cell neoplasm end up being diagnosed with Hurthle cell adenoma after surgical removal, which is not cancer. It is apparently impossible to tell the difference between adenoma and carcinoma without surgically removing the nodule. I'm not sure if leaving the nodule untreated and delaying the surgery would allow a benign adenoma to become malignant (the only difference is whether the cells are contained in a capsule (adenoma) vs. broken through and/or have blood vessel infiltration (carcinoma)). Do I really want to take that risk, or just go ahead and get it out now when I have the best chance of getting it before it becomes cancer and if it is already malignant I can get treatment for it as soon as possible and not constantly worry about a ticking-time bomb in my thyroid. I guess I will do some more research to find out what rate these benign Hurthle cell adenomas turn into cancer -- Hurthle Cell carcinoma tends to metastasize more than papillary carcinoma and is a lot harder to treat with radioactive iodine, so it is not something I'd want to wait and see on. I'm also very anxious about the possibility of cancer - will delaying surgery lead to increased and prolonged anxiety on my part, even if everything points towards adenoma? Definitely.
Hi. I had my left lobe and istmus out 2014 due to hurthle cell tumour. Have hashis as well. Turns out it was a true hurthle cell tumour and only 1cm. I had 3 fnas all suspicious. They got it in time. They can only tell by slice and dicing it in pathology so that made my decision. Just as well as it turned out for me. Hurthle cell adenomas are at higher risk of going cancerous too especially if you gave hashis. Worth considering for that fact alone. Hurthle cell cancer has poor survival rates.
Also, not all drs put you on thyroxine after surgery so make sure if you do have the hemi thyroidectomy, get thyroxine meds. I am still not on meds and have lots of hypo problems. Hoping to change that soon.
Also, not all drs put you on thyroxine after surgery so make sure if you do have the hemi thyroidectomy, get thyroxine meds. I am still not on meds and have lots of hypo problems. Hoping to change that soon.
Thanks so much for sharing your experience! I'm glad they got yours out in time. Everything I've read about Hurthle cell cancer spreading suggests it is a lot harder to kill the cells that have spread compared to other thyroid cancers.
I think I have decided to definitely have the surgery because even if it is not Hurthle Cell cancer now, it has a good chance of becoming one in the future, and if it is already a carcinoma, the sooner I get it out the better my chances are that it has not spread yet.
I'm still leaning towards doing a total thyroidectomy since my "good" lobe is still very lumpy and will need follow up indefinitely, and I'm already experiencing quite a few hypo symptoms even with my whole thyroid still in so I know I'm going to need hormone meds. I know there are more risks of complications with TT, but if I'm eventually going to have to have the other lobe removed I'd rather get it done in one go.
I think I have decided to definitely have the surgery because even if it is not Hurthle Cell cancer now, it has a good chance of becoming one in the future, and if it is already a carcinoma, the sooner I get it out the better my chances are that it has not spread yet.
I'm still leaning towards doing a total thyroidectomy since my "good" lobe is still very lumpy and will need follow up indefinitely, and I'm already experiencing quite a few hypo symptoms even with my whole thyroid still in so I know I'm going to need hormone meds. I know there are more risks of complications with TT, but if I'm eventually going to have to have the other lobe removed I'd rather get it done in one go.
Once they get in there during surgey, they will have a better look at the other Lobe. They will know for sure whether it is better for a TT. All the best for your surgery. First few days are a challenge but it heals fairly quickly. Use lots of moisturizer on the area when you go home. Helps with scarring less. You can hardly see mine now. Cheers
Thanks - I am supposed to go on a "family reunion" trip to Hawaii two weeks (16 days really) after my scheduled surgery (this has been planned for a year and I don't think I can get out of it). I don't really want to delay the surgery, and if there are no complications I think it will be fine, I'm just hoping I can find a way to protect the scar site while traveling and I will of course protect the scar from the sun. (My mom says wear lots of scarves - I do not like anything touching my neck and have not worn a scarf since my early 20s for this reason - in hindsight that probably was a missed sign that something was wrong with my thyroid :-) ).
From what I've read, most people are ready to get back to their daily activities in 1-2 weeks - so I'm thinking that this trip will be ok. The biggest challenge for me will be taking a break from running during the recovery period since that is my favorite way to cope with stress and anxiety. (I will of course take as long a break as needed from running - I've learned this lesson from numerous running injuries that it's always better to wait for it to heal then to go running before I'm ready). I'm looking forward to being on the other side of this surgery in the near future!
From what I've read, most people are ready to get back to their daily activities in 1-2 weeks - so I'm thinking that this trip will be ok. The biggest challenge for me will be taking a break from running during the recovery period since that is my favorite way to cope with stress and anxiety. (I will of course take as long a break as needed from running - I've learned this lesson from numerous running injuries that it's always better to wait for it to heal then to go running before I'm ready). I'm looking forward to being on the other side of this surgery in the near future!
Treatment of hypothyroidism or hyperthyroidism often reduces the size of a goiter/nodules.
One study stated the rate of malignancy in nodules suspicious by Afirma was 18.3% (11 out of 60 patients).
Another study on Hurthle cell neoplasms found Hurthle cell carcinomas had significantly larger tumours. Risk of malignancy - 17% for tumours 1 cm or less, 23% for tumours 1 to 4 cm, tumours 4 cm or greater 65% of the time.
I always seek a second or third opinion (and testing if needed) when it is in regards to cancer/surgery personally.
One study stated the rate of malignancy in nodules suspicious by Afirma was 18.3% (11 out of 60 patients).
Another study on Hurthle cell neoplasms found Hurthle cell carcinomas had significantly larger tumours. Risk of malignancy - 17% for tumours 1 cm or less, 23% for tumours 1 to 4 cm, tumours 4 cm or greater 65% of the time.
I always seek a second or third opinion (and testing if needed) when it is in regards to cancer/surgery personally.
1 Comments
Thanks RedStar for the advice!
As you said, it's 1.4 cm so it is smaller than most Hurthle Cell carcinomas - if I leave it in and it is cancer, it is more likely to spread than some other thyroid cancers, but there is always the option of following up with an ultrasound in another 6 months to see if it is still growing (especially if I start treatment for hypothyroidism in the meantime).
I talked to my PCP on the phone today (I was following up on a prescription refill for something else) and she asked me what I thought about the biopsy/Afirma result. I told her the ENT already called to schedule surgery before I even saw the result and that had me stressed out for a bit until I saw the Afirma result. The actual Afirma result is what I was expecting from looking up Afirma test and Hurthle Cell neoplasms, so my anxiety is much better now, and my PCP said she would talk to the pathologist to get his opinion.
I think the Afirma test with ~50% risk is overestimating the risk for Hurthle Cell cancers because I've seen that study you mentioned too! With Hurthle Cells I think they just can't tell one way or the other that easily. (There are 3 possible results from the Afirma: Benign 99% risk of malignancy).
My follow up with the ENT is not scheduled until May 28, so I have some time to do some research and get a second opinion.
I still do not know if my ENT wants to do a lobectomy or total thyroidectomy, all I have heard from her is her scheduler wanting to schedule my surgery.
As you said, it's 1.4 cm so it is smaller than most Hurthle Cell carcinomas - if I leave it in and it is cancer, it is more likely to spread than some other thyroid cancers, but there is always the option of following up with an ultrasound in another 6 months to see if it is still growing (especially if I start treatment for hypothyroidism in the meantime).
I talked to my PCP on the phone today (I was following up on a prescription refill for something else) and she asked me what I thought about the biopsy/Afirma result. I told her the ENT already called to schedule surgery before I even saw the result and that had me stressed out for a bit until I saw the Afirma result. The actual Afirma result is what I was expecting from looking up Afirma test and Hurthle Cell neoplasms, so my anxiety is much better now, and my PCP said she would talk to the pathologist to get his opinion.
I think the Afirma test with ~50% risk is overestimating the risk for Hurthle Cell cancers because I've seen that study you mentioned too! With Hurthle Cells I think they just can't tell one way or the other that easily. (There are 3 possible results from the Afirma: Benign 99% risk of malignancy).
My follow up with the ENT is not scheduled until May 28, so I have some time to do some research and get a second opinion.
I still do not know if my ENT wants to do a lobectomy or total thyroidectomy, all I have heard from her is her scheduler wanting to schedule my surgery.
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