Hurthle Cell Variant of Papillary Cancer

Lori_f

I am not sure what this is, but that is what i have. The day at the surgeons office was a bit of a blur, and i have already had a hemi thyroidectomy, am going back on the 6th of december for the rest of it to be taken out. I know papillary cancer is easily treated and is said not to be to bad, i do not that hurthle cell is a different matter altogether. So how bad is this one? What exactly is it? Just a bit confused.

Rustifox

Hi, Lori - I'm sorry you are going through this. The early stages of our diagnosis do tend to become a 'blur' for us, so your reaction is totally normal - but that doesn't make it any easier, either.

Hurthle (sometimes spelled as 'hurtle', too) is a more aggressive form of papillary, but that doesn't mean it isn't treatable - it just means that somewhat more aggressive and complete treatment is required.

I also had a hemi/lobectomy at first, then had to return about 6 weeks later for the completion thyroidectomy. I know how upsetting and frustrating it can be to hear you have to go back for the second surgery - the best advice I received during that time was to try to focus on one step at a time.

With 'plain' papillary, the cells are very much like thyroid cells; with follicular variant of papillary they have somewhat mutated away from those thyroid like behaviours - with hurtle cell carcinoma they have mutated a little more.

It is important to ask to have your pathology from the next surgery to be 'double checked', and get a second pathology opinion. Hurtle cells can be benign, so it is important to have the diagnosis confirmed, and also treated by someone who is familiar with this type of thyroid cancer. You may want to consider seeing a thyroid cancer specialist - while many cancer doctors will often treat us, it is important to have this properly treated rapidly - early treatment has the best odds of ensuring this does not persist:
http://www.thyroid-cancer.net/

MD Anderson has two excellent facilites, as well, and may be worth considering:
http://www.mdanderson.org/diseases/thyroid/

You can also find a tremendous amount of support and information from this group:
http://www.thyca.org/

This lists the local support groups for Thyca in your area:
http://www.thyca.org/support.htm

This is the email and/or web based support arm of Thyca - I would chose the 'no email' option, though - it is a VERY active group, with sometimes well over 100 posts by members a day - you can just read the posts at the yahoo website:
http://www.thyca.org/email.htm

In general, though, hurtle cell just defines that there are more 'mutant' types of cells than papillary, or follicular variant of papillary. Many other factors also put together the risk factors for you - ie the size of your original tumor(s), your age, among many others. It is best to make sure you are headed towards treatment with someone who has experience in hurtle cell carcinoma, though... please consider asking the Thyca members for a suggestion of an experienced thyroid cancer doctor/endocrinologist' in your area. All the best to you.

nikkidai

Rustifox said:

Hi, Lori - I'm sorry you are going through this. The early stages of our diagnosis do tend to become a 'blur' for us, so your reaction is totally normal - but that doesn't make it any easier, either.

Hurthle (sometimes spelled as 'hurtle', too) is a more aggressive form of papillary, but that doesn't mean it isn't treatable - it just means that somewhat more aggressive and complete treatment is required.

I also had a hemi/lobectomy at first, then had to return about 6 weeks later for the completion thyroidectomy. I know how upsetting and frustrating it can be to hear you have to go back for the second surgery - the best advice I received during that time was to try to focus on one step at a time.

With 'plain' papillary, the cells are very much like thyroid cells; with follicular variant of papillary they have somewhat mutated away from those thyroid like behaviours - with hurtle cell carcinoma they have mutated a little more.

It is important to ask to have your pathology from the next surgery to be 'double checked', and get a second pathology opinion. Hurtle cells can be benign, so it is important to have the diagnosis confirmed, and also treated by someone who is familiar with this type of thyroid cancer. You may want to consider seeing a thyroid cancer specialist - while many cancer doctors will often treat us, it is important to have this properly treated rapidly - early treatment has the best odds of ensuring this does not persist:
http://www.thyroid-cancer.net/

MD Anderson has two excellent facilites, as well, and may be worth considering:
http://www.mdanderson.org/diseases/thyroid/

You can also find a tremendous amount of support and information from this group:
http://www.thyca.org/

This lists the local support groups for Thyca in your area:
http://www.thyca.org/support.htm

This is the email and/or web based support arm of Thyca - I would chose the 'no email' option, though - it is a VERY active group, with sometimes well over 100 posts by members a day - you can just read the posts at the yahoo website:
http://www.thyca.org/email.htm

In general, though, hurtle cell just defines that there are more 'mutant' types of cells than papillary, or follicular variant of papillary. Many other factors also put together the risk factors for you - ie the size of your original tumor(s), your age, among many others. It is best to make sure you are headed towards treatment with someone who has experience in hurtle cell carcinoma, though... please consider asking the Thyca members for a suggestion of an experienced thyroid cancer doctor/endocrinologist' in your area. All the best to you.

I am a newbie. Thryoidectomy 9 days ago, Hurthle cancer, follicular. Told yesterday to go w/o any synthroid til Jan 8, then x-ray scan/treatment? I am feeling very confused and really want to talk to someone who has gone hypo. Is it really that bad? What are symptoms, how is treatment RAI tolerated etc. Thanks for any help.

nikkidai

Rustifox said:

Hi, Lori - I'm sorry you are going through this. The early stages of our diagnosis do tend to become a 'blur' for us, so your reaction is totally normal - but that doesn't make it any easier, either.

Hurthle (sometimes spelled as 'hurtle', too) is a more aggressive form of papillary, but that doesn't mean it isn't treatable - it just means that somewhat more aggressive and complete treatment is required.

I also had a hemi/lobectomy at first, then had to return about 6 weeks later for the completion thyroidectomy. I know how upsetting and frustrating it can be to hear you have to go back for the second surgery - the best advice I received during that time was to try to focus on one step at a time.

With 'plain' papillary, the cells are very much like thyroid cells; with follicular variant of papillary they have somewhat mutated away from those thyroid like behaviours - with hurtle cell carcinoma they have mutated a little more.

It is important to ask to have your pathology from the next surgery to be 'double checked', and get a second pathology opinion. Hurtle cells can be benign, so it is important to have the diagnosis confirmed, and also treated by someone who is familiar with this type of thyroid cancer. You may want to consider seeing a thyroid cancer specialist - while many cancer doctors will often treat us, it is important to have this properly treated rapidly - early treatment has the best odds of ensuring this does not persist:
http://www.thyroid-cancer.net/

MD Anderson has two excellent facilites, as well, and may be worth considering:
http://www.mdanderson.org/diseases/thyroid/

You can also find a tremendous amount of support and information from this group:
http://www.thyca.org/

This lists the local support groups for Thyca in your area:
http://www.thyca.org/support.htm

This is the email and/or web based support arm of Thyca - I would chose the 'no email' option, though - it is a VERY active group, with sometimes well over 100 posts by members a day - you can just read the posts at the yahoo website:
http://www.thyca.org/email.htm

In general, though, hurtle cell just defines that there are more 'mutant' types of cells than papillary, or follicular variant of papillary. Many other factors also put together the risk factors for you - ie the size of your original tumor(s), your age, among many others. It is best to make sure you are headed towards treatment with someone who has experience in hurtle cell carcinoma, though... please consider asking the Thyca members for a suggestion of an experienced thyroid cancer doctor/endocrinologist' in your area. All the best to you.

Rusti, I have found your info soooo helpful. I have Hurthle, follicular and know it's rare. It is good to hear from someone who has been through this in the past. Lori and I are so new to all this. Thanks to you for your helpful info.
Nikkidai