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Suspicious for neoplasm - Veracyte genomic testing?
I just had my FNA biopsy today. Luckily for me, the doctor is also a pathologist and could give me my diagnosis right away. Unfortunately, one nodule came back as "suspicious for neoplasm", and he recommended I send off a biopsy to a company called Veracyte in San Francisco for genomic testing.
Has anyone had a "suspicious for neoplasm" diagnosis? I'm assuming this has something to do with "follicular" cells or "Hurthle" cells, but I'm not sure since I just got a brief diagnosis and the full report takes a few days. (I found those terms by googling, the doctor did not bring them up during the appointment.) The doctor told me this gives me a 30% chance (neoplasm is pre-cancerous? maybe the 30% is chance of developing into cancer?) and that there is a 50/50 chance that the genomic testing will come back benign. If it is positive for neoplasm then I might need to do a lobectomy.
Has anyone had this genomic testing done with Veracyte? Does it take very long to get a result? I'm very anxious about the whole thing - trying not to stress but it's hard getting an indeterminant result. The benefit would be getting to keep the thyroid/ thyroid function by not getting a lobectomy
if it comes back benign.
Other nodule tested was benign. Apparently, my whole thyroid is lots of large nodules kind of growing into each other - this in itself sounds suspiciously like a thyroid-inflammatory disease to me. The suspicious for neoplasm was the only one that showed up as hypoechoic on the ultrasound.
Here's some background on my thyroid:
I discovered thyroid nodules in the mirror recently, large enough to see. Since then, I learned I have a family history of thyroid problems (grandmother had thyroid removed at ~40), my aunt also has nodules. I went to PCP and was diagnosed by palpation with nontoxic multinodular goiter.
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.
I have not had thyroid antibodies tested - my ENT wasn't really concerned about the enlarged thyroid/hypothyroidism symptoms I've experienced (my FNA biopsy doctor/pathologist was more interested in these though). I was waiting for FNA results to get thyroid antibodies done, now I'm unsure if I should just wait for genomic results or go ahead and get the antibodies done as well.
Has anyone had a "suspicious for neoplasm" diagnosis? I'm assuming this has something to do with "follicular" cells or "Hurthle" cells, but I'm not sure since I just got a brief diagnosis and the full report takes a few days. (I found those terms by googling, the doctor did not bring them up during the appointment.) The doctor told me this gives me a 30% chance (neoplasm is pre-cancerous? maybe the 30% is chance of developing into cancer?) and that there is a 50/50 chance that the genomic testing will come back benign. If it is positive for neoplasm then I might need to do a lobectomy.
Has anyone had this genomic testing done with Veracyte? Does it take very long to get a result? I'm very anxious about the whole thing - trying not to stress but it's hard getting an indeterminant result. The benefit would be getting to keep the thyroid/ thyroid function by not getting a lobectomy
if it comes back benign.
Other nodule tested was benign. Apparently, my whole thyroid is lots of large nodules kind of growing into each other - this in itself sounds suspiciously like a thyroid-inflammatory disease to me. The suspicious for neoplasm was the only one that showed up as hypoechoic on the ultrasound.
Here's some background on my thyroid:
I discovered thyroid nodules in the mirror recently, large enough to see. Since then, I learned I have a family history of thyroid problems (grandmother had thyroid removed at ~40), my aunt also has nodules. I went to PCP and was diagnosed by palpation with nontoxic multinodular goiter.
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.
I have not had thyroid antibodies tested - my ENT wasn't really concerned about the enlarged thyroid/hypothyroidism symptoms I've experienced (my FNA biopsy doctor/pathologist was more interested in these though). I was waiting for FNA results to get thyroid antibodies done, now I'm unsure if I should just wait for genomic results or go ahead and get the antibodies done as well.
Hey! Hope you’re feeling better. How did it go? Update?
1 Comments
Hi Fayadosky,
Thanks for asking! I am doing much, much better (but the last few months have been stressful, and I was tired of thinking about my thyroid all the time, so I haven't been on this site that recently).
I had my right thyroid lobe removed June 21 - the pathology at my hospital was inconclusive, so they sent it off to Cleveland Clinic for a second opinion. It came back that not only was the suspicious nodule "Oncocytic variant of papillary thyroid carcinoma", I had 7 other nodules on the right thyroid and two of those were "follicular variant of papillary thyroid carcinoma". I have Hashimoto's and had a multinodular goiter, but we weren't expecting three different nodules to be cancerous and odds were high that the remaining left side might also have cancerous nodules, and if not now, probably will in the future, so I had the rest of my thyroid removed on August 23. I had lots of swollen lymph nodes from Hashi's, but thankfully zero out of 13 cancer in them, and all three of my cancerous nodules were small (1.1cm, 0.9cm, and 0.9cm), none had broken through the capsule, and no sign of spread past the thyroid. Surgeries both went really well despite my swollen and inflamed thyroid, and my scar is healing nicely.
My ENT who did my surgeries thought I would still definitely need radioactive iodine treatment, and I couldn't see an endocrinologist until October 18 (because apparently endocrinologists are overbooked with patients in my area). I think my ENT was thinking that usually with one small cancerous nodule, no RAI, but with multiple foci usually they treat with RAI. I had my endocrinologist appointment a week ago. He did an ultrasound specifically looking for suspicious lymph nodes in my neck and didn't see anything. He said that because my nodules were all small. there was no evidence they had broken through the capsule, and because of my age (38), he was going to hold off on RAI for now. Because of my Hashi's, he can't use antibody levels to assess how much thyroid tissue I have left/use it to monitor if any cancer has spread, but there is a blood test which he uses for people with Hashi's to determine whether to do RAI, and we're doing that in 4 weeks. I'm doubtful it has spread, and I was prepared to do the radioactivity going in to that appointment, so at this point I am ok with whatever the decision is.
The surgeries went well, but now with no thyroid, getting my hormone level to the right dosage has been a slow road so far. I started out at 125 mcg levothyroxine, and at my first blood test post surgery, my TSH was 16.43 (range 0.4-4.00) on September 18, so my ENT adjusted to 137.5 mcg which wasn't enough. Now my latest TSH is 12.83 (range 0.4-4.00) on October 10. My new thyroid doctor (the endocrinologist) upped my levothyroxine from 137.5 mcg/day to 167.5 mcg, and it has only been one week at the new dose, but I'm so much better at 167.5 mcg. I actually have some energy in the afternoons to get things done, which hasn't happened in several months. I'm not sure I'm back to normal thyroid hormone level (or if I even know what normal is for me because I had mild hypo symptoms for so long), but I'm definitely doing a lot better. I've been continuing to run a lot - I had to wait 2 weeks after the latest surgery but now I run most mornings, which definitely makes me feel better too.
The hardest part for me through the whole thyroid cancer diagnosis was anxiety about the unknown and not knowing what was coming next, so now I am in a much better place, despite the not great diagnosis of papillary thyroid cancer. It's not great that I had to have my whole thyroid removed, but I'm happy I did and got the cancer out early. My grandmother had her thyroid removed when she was 47 and lived a long life on thyroid medication, so I know it can be done. My anxiety is so much better now that I've gone through the whole thing and am mostly on the other side now.
Thanks for asking! I am doing much, much better (but the last few months have been stressful, and I was tired of thinking about my thyroid all the time, so I haven't been on this site that recently).
I had my right thyroid lobe removed June 21 - the pathology at my hospital was inconclusive, so they sent it off to Cleveland Clinic for a second opinion. It came back that not only was the suspicious nodule "Oncocytic variant of papillary thyroid carcinoma", I had 7 other nodules on the right thyroid and two of those were "follicular variant of papillary thyroid carcinoma". I have Hashimoto's and had a multinodular goiter, but we weren't expecting three different nodules to be cancerous and odds were high that the remaining left side might also have cancerous nodules, and if not now, probably will in the future, so I had the rest of my thyroid removed on August 23. I had lots of swollen lymph nodes from Hashi's, but thankfully zero out of 13 cancer in them, and all three of my cancerous nodules were small (1.1cm, 0.9cm, and 0.9cm), none had broken through the capsule, and no sign of spread past the thyroid. Surgeries both went really well despite my swollen and inflamed thyroid, and my scar is healing nicely.
My ENT who did my surgeries thought I would still definitely need radioactive iodine treatment, and I couldn't see an endocrinologist until October 18 (because apparently endocrinologists are overbooked with patients in my area). I think my ENT was thinking that usually with one small cancerous nodule, no RAI, but with multiple foci usually they treat with RAI. I had my endocrinologist appointment a week ago. He did an ultrasound specifically looking for suspicious lymph nodes in my neck and didn't see anything. He said that because my nodules were all small. there was no evidence they had broken through the capsule, and because of my age (38), he was going to hold off on RAI for now. Because of my Hashi's, he can't use antibody levels to assess how much thyroid tissue I have left/use it to monitor if any cancer has spread, but there is a blood test which he uses for people with Hashi's to determine whether to do RAI, and we're doing that in 4 weeks. I'm doubtful it has spread, and I was prepared to do the radioactivity going in to that appointment, so at this point I am ok with whatever the decision is.
The surgeries went well, but now with no thyroid, getting my hormone level to the right dosage has been a slow road so far. I started out at 125 mcg levothyroxine, and at my first blood test post surgery, my TSH was 16.43 (range 0.4-4.00) on September 18, so my ENT adjusted to 137.5 mcg which wasn't enough. Now my latest TSH is 12.83 (range 0.4-4.00) on October 10. My new thyroid doctor (the endocrinologist) upped my levothyroxine from 137.5 mcg/day to 167.5 mcg, and it has only been one week at the new dose, but I'm so much better at 167.5 mcg. I actually have some energy in the afternoons to get things done, which hasn't happened in several months. I'm not sure I'm back to normal thyroid hormone level (or if I even know what normal is for me because I had mild hypo symptoms for so long), but I'm definitely doing a lot better. I've been continuing to run a lot - I had to wait 2 weeks after the latest surgery but now I run most mornings, which definitely makes me feel better too.
The hardest part for me through the whole thyroid cancer diagnosis was anxiety about the unknown and not knowing what was coming next, so now I am in a much better place, despite the not great diagnosis of papillary thyroid cancer. It's not great that I had to have my whole thyroid removed, but I'm happy I did and got the cancer out early. My grandmother had her thyroid removed when she was 47 and lived a long life on thyroid medication, so I know it can be done. My anxiety is so much better now that I've gone through the whole thing and am mostly on the other side now.
Update #3
Afirma testing is back
"Risk of malignancy: Afirma GSC Suspicious ~50%"
"Malignancy classifiers: Negative"
"MTC and BRAF classifier results were negative and RET/PTC1 and RET/PTC3 were not detected. These results do not change the risk of malignancy of the (ROM) of the Afirma GSC suspicious result."
This is kind of what I was expecting since Hurthle Cell neoplasm has already gone through a change that makes it difficult to tell benign from cancerous on the Afirma test (unlike other indeterminant biopsy results). So I need at least a lobectomy now, possible total thyroidectomy. Chances are still good that it is benign - it is small for Hurthle Cell cancer (average size at diagnosis is 4cm, my nodule is 1.4 cm), and nothing has indicated lymph node involvement, etc. And if malignancy classifiers were present, it would be >99% risk of malignancy.
1 will update this once I know anything more about malignancy (but surgery is 2 months away).
Afirma testing is back
"Risk of malignancy: Afirma GSC Suspicious ~50%"
"Malignancy classifiers: Negative"
"MTC and BRAF classifier results were negative and RET/PTC1 and RET/PTC3 were not detected. These results do not change the risk of malignancy of the (ROM) of the Afirma GSC suspicious result."
This is kind of what I was expecting since Hurthle Cell neoplasm has already gone through a change that makes it difficult to tell benign from cancerous on the Afirma test (unlike other indeterminant biopsy results). So I need at least a lobectomy now, possible total thyroidectomy. Chances are still good that it is benign - it is small for Hurthle Cell cancer (average size at diagnosis is 4cm, my nodule is 1.4 cm), and nothing has indicated lymph node involvement, etc. And if malignancy classifiers were present, it would be >99% risk of malignancy.
1 will update this once I know anything more about malignancy (but surgery is 2 months away).
2 Comments
Will they be doing more testing between now and the surgery or will they just plan the surgery and let it go at that? At what point will they decide whether they will do a partial or total thyroidectomy?
I'm sorry you're going through this.
I'm sorry you're going through this.
I just posted another question about whether TT or lobectomy to see if anyone has advice. I'm waiting on results from Hashimoto's testing, but my entire thyroid is large and has lots of nodules, so I'm leaning towards pushing for TT since I think the remaining lobe would just continue to get worse.
I'm actually doing much better now that I have the Afirma test result even though it's not great news. I wish I got the result before the scheduler called me since I was expecting it to be still suspicious, but just kind of panicked when she said my ENT wants to schedule surgery and I had no idea whether the result was in or what was going on. Hurthle cell neoplasms seem to come up suspicious a lot on the Afirma, but still a good chance mine is benign, they just can't tell until they get the nodule out.
My (apparently now) pre-op appointment isn't until May 28, but I will probably contact my ENT before that with questions about TT vs. lobectomy (and see if she could get me in sooner although the scheduler said 1st available was June 21).
I'm actually doing much better now that I have the Afirma test result even though it's not great news. I wish I got the result before the scheduler called me since I was expecting it to be still suspicious, but just kind of panicked when she said my ENT wants to schedule surgery and I had no idea whether the result was in or what was going on. Hurthle cell neoplasms seem to come up suspicious a lot on the Afirma, but still a good chance mine is benign, they just can't tell until they get the nodule out.
My (apparently now) pre-op appointment isn't until May 28, but I will probably contact my ENT before that with questions about TT vs. lobectomy (and see if she could get me in sooner although the scheduler said 1st available was June 21).
Update #2:
No Afirma results yet (at least not any I've seen) but I just received a call today from the ENT's office wanting to schedule my surgery. I'm not sure if a.) they've received the results from Veracyte/Afirma and it's still suspicious for cancer (odds are Hurthle cell neoplasm will still show up suspicious even if it is benign) or b.) they're basing this off the original biopsy result of suspicious, which they received one week ago and I have already messaged the doctor to ask about the Afirma testing. The timing seems like they have the Afirma result.
I asked if they had received the Afirma results and that's why they were calling now, but the scheduler didn't know the answer to that... so frustrating. Right now I'm feeling pretty stressed since I can only assume they have the test results and that's why they want to schedule. (I knew there was a very good chance I would need the surgery, but each step further along the way comes with a new wave of anxiety and stress). The earliest they can do the surgery is June 21, so looks like a lot of waiting too if I really do need the surgery.
My mom suggested I get a second opinion, but I'm thinking if the Afirma says "suspicious" then yes surgery, if the Afirma says benign I can hold off for now... I'm guessing Update #3 with Afirma results is coming soon...
No Afirma results yet (at least not any I've seen) but I just received a call today from the ENT's office wanting to schedule my surgery. I'm not sure if a.) they've received the results from Veracyte/Afirma and it's still suspicious for cancer (odds are Hurthle cell neoplasm will still show up suspicious even if it is benign) or b.) they're basing this off the original biopsy result of suspicious, which they received one week ago and I have already messaged the doctor to ask about the Afirma testing. The timing seems like they have the Afirma result.
I asked if they had received the Afirma results and that's why they were calling now, but the scheduler didn't know the answer to that... so frustrating. Right now I'm feeling pretty stressed since I can only assume they have the test results and that's why they want to schedule. (I knew there was a very good chance I would need the surgery, but each step further along the way comes with a new wave of anxiety and stress). The earliest they can do the surgery is June 21, so looks like a lot of waiting too if I really do need the surgery.
My mom suggested I get a second opinion, but I'm thinking if the Afirma says "suspicious" then yes surgery, if the Afirma says benign I can hold off for now... I'm guessing Update #3 with Afirma results is coming soon...
COMMUNITY LEADER
I'm sorry your post hasn't been answered yet.
A neoplasm is a mass of abnormal cells in which multiplication is uncontrolled. It can contain benign, pre-cancer, and/or cancer cells.
I'm not familiar with the Afima test, but hopefully, it won't take too many days for it come back.
I agree that it might be a waste to do the antibody tests since you might end up with a thyroidectomy and it will be a moot point anyway, but if you'd like to know just for your own information there's really no reason not to do them either. If you have a TT, antibodies will go into remission because there will be nothing to attack, though TPOab and TgAb can be present in small amounts with other autoimmune conditions "and" if you have one autoimmune, chances of getting another are greater. In that sense, it would be okay to know about the antibodies.
A neoplasm is a mass of abnormal cells in which multiplication is uncontrolled. It can contain benign, pre-cancer, and/or cancer cells.
I'm not familiar with the Afima test, but hopefully, it won't take too many days for it come back.
I agree that it might be a waste to do the antibody tests since you might end up with a thyroidectomy and it will be a moot point anyway, but if you'd like to know just for your own information there's really no reason not to do them either. If you have a TT, antibodies will go into remission because there will be nothing to attack, though TPOab and TgAb can be present in small amounts with other autoimmune conditions "and" if you have one autoimmune, chances of getting another are greater. In that sense, it would be okay to know about the antibodies.
1 Comments
Thanks Barb.
I emailed my ENT to ask if I should wait on the antibody test until the Afirma comes back, she said go ahead and get the antibody test now so that's what I'm going to do. If I keep my thyroid it's good to know, and if I have to have a TT, I'll be able to let my sisters and brother know what they should get tested for.
As for the Afirma - I was having some serious doubts about whether it can identify benign vs. malignant Hurthle cells since most websites say it cannot. My ENT says it correctly identifies benign tumors 90% and cancer 75% of the time... but from everything I've seen if it comes back suspicious for cancer it is still 50/50 chance benign.
Hurthle cells have already gone through some change which makes them much harder for the genetic testing to distinguish cancer from benign or adenoma, and the test was developed mostly to identify papillary tumors so I have a strong feeling it is going to come back suspicious for cancer. If it comes back suspicious, there is still a pretty high chance that it is benign since the nodule is 2.5cm).
It's hard to find a lot of people describing their experience with Afirma testing on the internet, especially looking at Hurthle-cell cancer. I found one study from 2015 of people with FNB suspicious for Hurthle-cell cancer that had the Afirma test. 36% had benign Afirma results, 63% had suspicious Afirma results, but only 14% of those who had suspicious results and had surgery actually had cancer. (This is why I'm a bit skeptical about the Afirma test but more optimistic now that my nodule may be benign even if the test says it is suspicious).
Anyway - I am feeling a lot less anxious now than a couple of days ago. All I can really do is just wait for the next step and then proceed once we have more information. The whole process is very stressful but this site is helpful since I have seen lots of posts by people going through the same process.
I will post the Afirma results and what happens next in case someone in the future wants to know what happened in this case.
I emailed my ENT to ask if I should wait on the antibody test until the Afirma comes back, she said go ahead and get the antibody test now so that's what I'm going to do. If I keep my thyroid it's good to know, and if I have to have a TT, I'll be able to let my sisters and brother know what they should get tested for.
As for the Afirma - I was having some serious doubts about whether it can identify benign vs. malignant Hurthle cells since most websites say it cannot. My ENT says it correctly identifies benign tumors 90% and cancer 75% of the time... but from everything I've seen if it comes back suspicious for cancer it is still 50/50 chance benign.
Hurthle cells have already gone through some change which makes them much harder for the genetic testing to distinguish cancer from benign or adenoma, and the test was developed mostly to identify papillary tumors so I have a strong feeling it is going to come back suspicious for cancer. If it comes back suspicious, there is still a pretty high chance that it is benign since the nodule is 2.5cm).
It's hard to find a lot of people describing their experience with Afirma testing on the internet, especially looking at Hurthle-cell cancer. I found one study from 2015 of people with FNB suspicious for Hurthle-cell cancer that had the Afirma test. 36% had benign Afirma results, 63% had suspicious Afirma results, but only 14% of those who had suspicious results and had surgery actually had cancer. (This is why I'm a bit skeptical about the Afirma test but more optimistic now that my nodule may be benign even if the test says it is suspicious).
Anyway - I am feeling a lot less anxious now than a couple of days ago. All I can really do is just wait for the next step and then proceed once we have more information. The whole process is very stressful but this site is helpful since I have seen lots of posts by people going through the same process.
I will post the Afirma results and what happens next in case someone in the future wants to know what happened in this case.
Update:
Well the full report from my pathologist is in and as I expected it says "Suspicious for a follicular neoplasm - Hurthle cell type." "Aspirate material and cell block show abundant Hurthle cells with cytologic and architectural atypia. Minimal colloid is present. There is no increase in lymphocytes."
My PCP just called to tell me everything was "benign" but that they are sending it out for confirmation. (I think maybe she just read the part about the nodule on the left side being benign... which was in a separate report).
Has anyone had luck with Afirma testing for Hurthle cell neoplasm biopsies? I know this is less common than papillary thyroid cancer and can be more aggressive. I have been super stressed out about this since the biopsy 5 days ago but finally managed to get out for a short jog today. Now I'm feeling more stressed since lack of lymphocytes increase my concern that it could be cancer.
'I'm still not sure if I have Hashimoto's or not... trying to decide if I wait for Afirma testing results or just get the antibody test done anyway... there's a good chance that the thyroid is going to have to come out if the test comes back still suspicious. I have no idea how long it will take to get Afirma results.
Well the full report from my pathologist is in and as I expected it says "Suspicious for a follicular neoplasm - Hurthle cell type." "Aspirate material and cell block show abundant Hurthle cells with cytologic and architectural atypia. Minimal colloid is present. There is no increase in lymphocytes."
My PCP just called to tell me everything was "benign" but that they are sending it out for confirmation. (I think maybe she just read the part about the nodule on the left side being benign... which was in a separate report).
Has anyone had luck with Afirma testing for Hurthle cell neoplasm biopsies? I know this is less common than papillary thyroid cancer and can be more aggressive. I have been super stressed out about this since the biopsy 5 days ago but finally managed to get out for a short jog today. Now I'm feeling more stressed since lack of lymphocytes increase my concern that it could be cancer.
'I'm still not sure if I have Hashimoto's or not... trying to decide if I wait for Afirma testing results or just get the antibody test done anyway... there's a good chance that the thyroid is going to have to come out if the test comes back still suspicious. I have no idea how long it will take to get Afirma results.
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