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Hurthle Cell variant of Papillary Carcinoma

Jane16131
Posts: 5
Joined: Mar 2013

My husband is 66 years old and was diagnosed in August 2012 with Thyroid Cancer, which had spread to his lymph nodes on the right side. Our primary care physician referred us to an ENT.  The ENT had scheduled my husband for a total thyroidectomy and told us he was going to use the "berry picking" method of checking his lymph nodes in question.  My husband wasn't happy with this method of treatment and we did a lot of research to find a doctor that specialized in thyroid surgery and an oncologist who also specialized in thyroid cancer and endocrinology and proceeded to change doctors.

Surgery was performed on Octoer 3, 2012.  50 Lymph noded were removed and 14 of them were cancerous in all VI levels of the neck.  He had his central neck and right neck dissected.  He had no swelling, no pain, and no complications.  The surgeon did a wonderful job and was so kind and caring to boot.  His diagnosis was Hurthle Cell variant of Papillary Carcinoma, T3,N1b.  In November 2012 my husband had a Cat Scan and they saw 8 small nodules in his lungs (5 in the right lung and 3 in the left).  In January 2013, he had a dose of 200 millicuries of radio active iodine that had uptake in a very very small amount.  In early March 2013 he had a PET scan which didn't show the nodules because of their small size.  My husband has diabetes and the PET scan  results were a little bit skewed because of it.  We now have to wait until July 2013 for a Thyrogen study to see if the nodules have gotten any bigger.

My question is:  With Hurthle Cell Carcinoma, isn't there anything that we can do prevent these nodules from getting any bigger now?  Waiting until July seems too long to wait.  His oncologist has over 2000 patients and although I appreciate the fact that he is trying to help keep my husband alive, I would like to see some testing a little sooner.  Does everybody wait this long between tests for lung metastases?  Also, we know that T3,N1b isn't great, but is there anybody that can tell us what it really means?  Very scared!  Thank you.

 

 

 

 

 

 

 

 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Hi Jane,

I found a website that explains the staging acronyms that they use.  Here it is ...

http://columbiathyroidcenter.org/staging.html

I'll also cut and paste from it too ...

T: Tumor size (in cm)

  • T1: < 1cm
  • T2: 1-4 cm
  • T3: > 4 cm
  • T4: tumor grows outside of the thyroid
    • T4a: grows into nearby structures
    • T4b: grows in spine or nearby large blood vessels

N: Lymph Nodes

  • NX: regional lymph nodes can't be assessed
  • N0: no involved regional lymph nodes
  • N1: involved regional lymph nodes
    • N1a: involved central neck lymph nodes
    • N1b: involved lateral neck or mediastinal (chest) lymph nodes

M: Distant Metastases

(i.e. cancer has spread to other areas of the body like the lung or bone)

  • M0: no distant metastases
  • M1: distant metastes

So, T3N1B means the tumor (or tumors) was greater than 4 cm but was contained in the thyroid, N1B means lymph nodes were also cancerous and were they were located.

While I do have Papillary, I don't have the Hurthle Cell variant and as far as I know, I don't have lung metastisis. But a recent sonogram showed 2 lymph nodes in my neck that are abnormally large, one of which is abnormally shaped.  I'm also waiting six months for a folow up sonogram and I'm also thinking that if these things are cancerous, why wait for them to metastasize.  The thing with thyroid cancer is it moves very slowly compared to almost all other types of cancer, so it takes a while for changes to show up when they do scans.

Alan

Jane16131
Posts: 5
Joined: Mar 2013

Thanks so much Alan.  I have read that papillary and follicular thyroid cancers are slow growing, but Hurthle Cell cancer is an aggressive cancer.  I'm with you as to wondering why they, as a rule, seem to wait a little long for additional testing to see if it has grown or not.

Please keep me posted on your cancer.  In my opinion they should be doing a FNB (fine needle biopsy) to find out whether or not the nodules in your neck are cancerous or not, but they have the knowledge and I do not.   How big are the nodules in your neck?

Here's wishing you the best. 

Jane

 

 

 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Hi Jane,

The nodes are small, 3 mm and 4 mm by 3 mm.  The surgeon explained that since he removed most of the shallow nodes on that side, these two are difficult targets.  He also explained that since he had already done major surgery on that side, the risk of nerve damage for a second surgery is greater.  In the first surgery he had moved any nerves and blood vessels that were in the way and then tried to put them back were they should be, but that wasn't always possible.  The sonogram tech said she could see a large number of surgical clips.

Alan

PS I agree with your decision to change surgeons, the "berry picking method" doesn't sound good to me either.  During my surgery 54 nodes were removed in 7 groups.  Since they are sort of arranged in lines, that's the way the surgeon took them out.  I'm also seeing an endochrinologist who specializes in thyroid cancer (sort of the same as an oncologist who specializes in thyroid cancer) and a head and neck surgeon who has done hundreds of thyroidectomies.

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Hi All,

I've looked around a little more and found that what Jane asked about and I found the web site for is "Clinical Staging".  There is also "Pathological Staging" {or TNM system} which is what you would see on the pathology report they should give you after your total thyroidectomy and neck disection {if you had a neck disection}.

Here are a bunch of web sites which describe this ...

http://www.cancer.org/cancer/thyroidcancer/detailedguide/thyroid-cancer-staging

http://www.cancer.gov/cancertopics/pdq/treatment/thyroid/HealthProfessional/page3

http://www.cancer.gov/cancertopics/factsheet/detection/staging

http://emedicine.medscape.com/article/2006643-overview

... I hope this is helpful.

Alan

 

michelle beddy
Posts: 8
Joined: Mar 2013

hi alan  

my partners got to under go a 3rd opp for lymph node  involvemwnt     through his chest next time    soo scared for him  as i dont hear of any one having this opp   it is arkward to get to  to do from the neck    

 

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