Hurthle Cell Carcinoma

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  • biskie
    biskie Member Posts: 9
    wlangley said:

    UCSF and Hurthle Cell Carcinoma
    I was diagnosed with HCC May 2009. I was able to be referred to the Head and Neck Cancer Center at UCSF by my primary care physician(I life in San Francisco). Dr. Lisa Orloff is one of the top head and neck cancer surgeons in the country--and UCSF was identified by my daughter who works at Johns Hopkins as one of two top centers for HCC in the country(the other is Mayo in MN). Dr. Orloff performed a second completion thyroidectomy on me in Aug 2009, I had radioactive iodine therapy in Oct 2009--continued with blood tests and sonograms for the past year and recently had a PET scan and a radioactive iodine scan. The treatment at UCSF is top notch and Dr. Orloff is straightforward and direct in telling you what the situation is, what you need to do, and the likelihood of various outcomes. You will most likely have a team of doctors who follow your case--an endocrinologist, a cancer surgeon, and a nuclear medicine specialist. My endocrinologist is not a part of UCSF(she trained there however) and transferring medical tests and other information between medical complexes can be bothersome--you have to be the advocate and follow up. If possible, I would recommend having a UCSF endocrinologist as part of your team if at all possible.

    If I can be of any help, please contact me at [email protected]

    UCSF Advice
    Thank you, Warwiz... This is reassuring. I am already noticing the lag times: we've been awaiting the UCSF precision ultra sound report for over a week now. I won't hesitate to advocate and follow up. It will be a relief to have a team... anyone who actually knows what Hurthle cells are! So far I've been a step ahead of the doctors in our town. Our UCSF consult appointment is with Dr. Jessica Gosnell.

    I read about the PET scan successes for locating recurrence. Is it a dangerous procedure? And, I worry about a lifetime of radiation for an 18 year old. Also, I have lots of questions about the iodine and radiation logistics after the thyroidectomy. Lack of energy & isolation are the opposite of what should be happening the month before start of frosh year at college.

    Staying tuned...
  • biskie
    biskie Member Posts: 9
    Predicting Recurrance of Hurthle cell carcinomas
    Hi everyone. I looked thru the postings here and didn't find anything about a test that I read about on the Net yesterday. I'm wondering if anyone has heard of Histopathology? It is a successful procedure for testing some genetic structures of patients with Hurthle cell cancer to determine the likelyhood of recurrance. Here is the article. The good stuff is at the end.


    http://ajp.amjpathol.org/cgi/content/full/160/1/175

    Patients and Histopathology
  • samanjan
    samanjan Member Posts: 40
    biskie said:

    UCSF Advice
    Thank you, Warwiz... This is reassuring. I am already noticing the lag times: we've been awaiting the UCSF precision ultra sound report for over a week now. I won't hesitate to advocate and follow up. It will be a relief to have a team... anyone who actually knows what Hurthle cells are! So far I've been a step ahead of the doctors in our town. Our UCSF consult appointment is with Dr. Jessica Gosnell.

    I read about the PET scan successes for locating recurrence. Is it a dangerous procedure? And, I worry about a lifetime of radiation for an 18 year old. Also, I have lots of questions about the iodine and radiation logistics after the thyroidectomy. Lack of energy & isolation are the opposite of what should be happening the month before start of frosh year at college.

    Staying tuned...

    biskie
    Dear Biskie,
    To the untrained eye, the TNM looked like stage 1, which is awesome. As I mentioned before, her youth is a definite positive here.
    As for the vacular and capsular invasion, I would not be overly concerned, as that is usually the case. Keep in mind this is called an accidental- type cancer; thyroid, that is, as it found quite by accident. The good news is that is was found in the very early stages, or so it appears, and in a patient quite young.
    While considered recurrent, HCC,it isn't always the case. Too little ris known about it for anything to be 100% on the money.
    Remain poisitive, and I am sure your daughter will react the same. Positivity acts on all parts of the brain and body. It rocks!!
    I'll catch up in early August when I return.
    Elaine
  • samanjan
    samanjan Member Posts: 40
    biskie said:

    Predicting Recurrance of Hurthle cell carcinomas
    Hi everyone. I looked thru the postings here and didn't find anything about a test that I read about on the Net yesterday. I'm wondering if anyone has heard of Histopathology? It is a successful procedure for testing some genetic structures of patients with Hurthle cell cancer to determine the likelyhood of recurrance. Here is the article. The good stuff is at the end.


    http://ajp.amjpathol.org/cgi/content/full/160/1/175

    Patients and Histopathology

    Biskie RAI 131
    Dear Biskie,
    The isolation was brief (about 10 days) and it was not total. You could be around others as long as you remained at arms length. Sleeping apart was also necessary, which should not be an issue for your daughter.
    I did not lose my energy, although I did lose a little hair. My eyes and mouth also were a bit dry post RAI 131. Unfortunately, it is our only option after a diagnosis of HCC is made.
    Elaine
  • biskie
    biskie Member Posts: 9
    samanjan said:

    Biskie RAI 131
    Dear Biskie,
    The isolation was brief (about 10 days) and it was not total. You could be around others as long as you remained at arms length. Sleeping apart was also necessary, which should not be an issue for your daughter.
    I did not lose my energy, although I did lose a little hair. My eyes and mouth also were a bit dry post RAI 131. Unfortunately, it is our only option after a diagnosis of HCC is made.
    Elaine

    Positive Vibes
    Thank you Samanjan... Again and again. Your focus on upbeat messages is invaluable to all of us. The informed guidance is a big plus too. We'll still be here in August when you return. With more questions and experience...

    Biskie
  • weberdns
    weberdns Member Posts: 154
    biskie said:

    weberdns' wisdom
    I got just the message I needed to hear from you weberdns! Bless you. I am living in two worlds right now. One - in my head about the nightmare to come in August, two - in my home with a vibrant, awesome teen who is entirely symptom free! She is rehearsing hard, singing and dancing for her part as Frenchy in Cabaret at the local CC this summer. You can bet her dear daddy and I will be giving rousing ovations at as many of the 18 shows we can attend!

    Thank you so much for your help.

    Happy to help
    So glad to have been help! I don't get here as often as I should because I'm torn with wanting to come here, but also wanting to get back to my "normal" life!! My PCP told me that I need to relax and enjoy my life and feels that a full cure is possible. So I come back saying that I had my thyroid removed March 4, adn March 12'th. Had my RAI in April into the first of May. It's now July and I am still symptom free. I know that it isn't a lot of time....but it is a time for celebration. My scan showed only neck activity after my RAI and my thyroglobulin is undetectable. I'm going to keep celebrating each day and try not to worry. Please give your daughter a cheer fur me during her performance. Please feel free to either post here if you need any more support or have questions, or send me an e-mail at [email protected] God bless all of you!
  • weberdns
    weberdns Member Posts: 154
    biskie said:

    TNM
    Thank you for your interest, Elaine. I hadn't noticed the TNM stage on the report. It is not easy to distinguish the meanings of the line that contains those initials. It says, "AJCC p TNM Staging (7th Ed. (based on available surgical material from this case): pT1b pNX pMX." We do not have results of the lymph ultra scan yet. But there is vascular and capsular invasion. There is no mention of metastatic disease. The tumor is 1.6cm greatest dimension.

    You are all my new BFFs!

    You'll get more info after
    removal and RAI. When they remove her thyroid they will check the lymph nodes for involvement. The same thing happens after the RAI. HEre is what these letters mean.

    •T indicates the size of the main (primary) tumor and whether it has grown into nearby areas.
    •N describes the extent of spread to nearby (regional) lymph nodes. Lymph nodes are small bean-shaped collections of immune system cells that are important in fighting infections. Cells from thyroid cancers can travel to lymph nodes in the neck and chest areas.
    •M indicates whether the cancer has spread (metastasized) to other organs of the body. (The most common site of spread of thyroid cancer is to the lungs. The next most common sites are the liver and bones.)
    Numbers or letters appear after T, N, and M to provide more details about each of these factors. The numbers 0 through 4 indicate increasing severity. The letter X means "cannot be assessed because the information is not available."

    T categories for thyroid cancerTX: Primary tumor cannot be assessed

    T0: No evidence of primary tumor

    T1: The tumor is 2 cm (slightly less than an inch) across or smaller and has not grown out of the thyroid.

    T1a: The tumor is 1 cm (less than half an inch) across or smaller and has not grown outside the thyroid.

    T1b: The tumor is larger than 1 cm but not larger than 2 cm across and has not grown outside of the thyroid.

    T2: The tumor is between 2 cm and 4 cm (slightly less than 2 inches) across and has not grown out of the thyroid.

    T3: The tumor is either larger than 4 cm or it has begun to grow a small amount into nearby tissues outside the thyroid.

    T4a: A tumor of any size that has grown extensively beyond the thyroid gland into nearby tissues of the neck, such as the larynx (voice box), trachea (windpipe), esophagus (tube connecting the throat to the stomach), or the nerve to the larynx. This is also called moderately advanced disease.

    T4b: A tumor of any size that has grown either back toward the spine or into nearby large blood vessels. This is also called very advanced disease.

    How is thyroid cancer staged?
    Staging is the process of finding out if and how far a cancer has spread. The stage of a cancer is one of the most important factors in choosing treatment options and predicting your chance for cure and long-term survival.

    Staging is based on the results of the physical exam, biopsy, and imaging tests (ultrasound, CT scan, MRI, chest x-ray, and/or nuclear medicine scans), which are described in the section, "How is thyroid cancer diagnosed?"

    The TNM staging system
    A staging system is a standard way for the cancer care team to summarize how large a cancer is and how far it has spread. Ask your doctor to explain thyroid cancer staging in a way that you understand so that you can take a more active role in making informed decisions about your treatment.

    The most common system used to describe the stages of cancers is the American Joint Committee on Cancer (AJCC) TNM system. The TNM system describes 3 key pieces of information:

    •T indicates the size of the main (primary) tumor and whether it has grown into nearby areas.
    •N describes the extent of spread to nearby (regional) lymph nodes. Lymph nodes are small bean-shaped collections of immune system cells that are important in fighting infections. Cells from thyroid cancers can travel to lymph nodes in the neck and chest areas.
    •M indicates whether the cancer has spread (metastasized) to other organs of the body. (The most common site of spread of thyroid cancer is to the lungs. The next most common sites are the liver and bones.)
    Numbers or letters appear after T, N, and M to provide more details about each of these factors. The numbers 0 through 4 indicate increasing severity. The letter X means "cannot be assessed because the information is not available."

    T categories for thyroid cancerTX: Primary tumor cannot be assessed

    T0: No evidence of primary tumor

    T1: The tumor is 2 cm (slightly less than an inch) across or smaller and has not grown out of the thyroid.

    T1a: The tumor is 1 cm (less than half an inch) across or smaller and has not grown outside the thyroid.

    T1b: The tumor is larger than 1 cm but not larger than 2 cm across and has not grown outside of the thyroid.

    T2: The tumor is between 2 cm and 4 cm (slightly less than 2 inches) across and has not grown out of the thyroid.

    T3: The tumor is either larger than 4 cm or it has begun to grow a small amount into nearby tissues outside the thyroid.

    T4a: A tumor of any size that has grown extensively beyond the thyroid gland into nearby tissues of the neck, such as the larynx (voice box), trachea (windpipe), esophagus (tube connecting the throat to the stomach), or the nerve to the larynx. This is also called moderately advanced disease.

    T4b: A tumor of any size that has grown either back toward the spine or into nearby large blood vessels. This is also called very advanced disease.

    T categories for anaplastic thyroid cancers:T4a: Tumor is still within the thyroid.

    T4b: Tumor has grown outside of the thyroid.

    N categories for thyroid cancerNX: Regional (nearby) lymph nodes cannot be assessed.

    N0: No spread to nearby lymph nodes.

    N1: The cancer has spread to nearby lymph nodes.

    N1a: Spread to lymph nodes around the thyroid in the neck (called pretracheal, paratracheal, and prelaryngeal lymph nodes).

    N1b: Spread to other lymph nodes in the neck (called cervical) or to lymph nodes behind the throat (retropharyngeal) or in the upper chest (superior mediastinal).

    M categories for thyroid cancerM0: No distant metastasis.

    M1: Distant metastasis is present, involving distant lymph nodes, internal organs, bones, etc.

    How is thyroid cancer staged?
    Staging is the process of finding out if and how far a cancer has spread. The stage of a cancer is one of the most important factors in choosing treatment options and predicting your chance for cure and long-term survival.

    Staging is based on the results of the physical exam, biopsy, and imaging tests (ultrasound, CT scan, MRI, chest x-ray, and/or nuclear medicine scans), which are described in the section, "How is thyroid cancer diagnosed?"

    The TNM staging system
    A staging system is a standard way for the cancer care team to summarize how large a cancer is and how far it has spread. Ask your doctor to explain thyroid cancer staging in a way that you understand so that you can take a more active role in making informed decisions about your treatment.

    The most common system used to describe the stages of cancers is the American Joint Committee on Cancer (AJCC) TNM system. The TNM system describes 3 key pieces of information:

    •T indicates the size of the main (primary) tumor and whether it has grown into nearby areas.
    •N describes the extent of spread to nearby (regional) lymph nodes. Lymph nodes are small bean-shaped collections of immune system cells that are important in fighting infections. Cells from thyroid cancers can travel to lymph nodes in the neck and chest areas.
    •M indicates whether the cancer has spread (metastasized) to other organs of the body. (The most common site of spread of thyroid cancer is to the lungs. The next most common sites are the liver and bones.)
    Numbers or letters appear after T, N, and M to provide more details about each of these factors. The numbers 0 through 4 indicate increasing severity. The letter X means "cannot be assessed because the information is not available."

    T categories for thyroid cancerTX: Primary tumor cannot be assessed

    T0: No evidence of primary tumor

    T1: The tumor is 2 cm (slightly less than an inch) across or smaller and has not grown out of the thyroid.

    T1a: The tumor is 1 cm (less than half an inch) across or smaller and has not grown outside the thyroid.

    T1b: The tumor is larger than 1 cm but not larger than 2 cm across and has not grown outside of the thyroid.

    T2: The tumor is between 2 cm and 4 cm (slightly less than 2 inches) across and has not grown out of the thyroid.

    T3: The tumor is either larger than 4 cm or it has begun to grow a small amount into nearby tissues outside the thyroid.

    T4a: A tumor of any size that has grown extensively beyond the thyroid gland into nearby tissues of the neck, such as the larynx (voice box), trachea (windpipe), esophagus (tube connecting the throat to the stomach), or the nerve to the larynx. This is also called moderately advanced disease.

    T4b: A tumor of any size that has grown either back toward the spine or into nearby large blood vessels. This is also called very advanced disease.

    T categories for anaplastic thyroid cancers:T4a: Tumor is still within the thyroid.

    T4b: Tumor has grown outside of the thyroid.

    N categories for thyroid cancerNX: Regional (nearby) lymph nodes cannot be assessed.

    N0: No spread to nearby lymph nodes.

    N1: The cancer has spread to nearby lymph nodes.

    N1a: Spread to lymph nodes around the thyroid in the neck (called pretracheal, paratracheal, and prelaryngeal lymph nodes).

    N1b: Spread to other lymph nodes in the neck (called cervical) or to lymph nodes behind the throat (retropharyngeal) or in the upper chest (superior mediastinal).

    M categories for thyroid cancerM0: No distant metastasis.

    M1: Distant metastasis is present, involving distant lymph nodes, internal organs, bones, etc.

    Stage grouping
    Once the values for T, N, and M are determined, they are combined to find the stage. Stage is expressed as a Roman numeral from I through IV, with letters used to divide a stage into substages. Unlike most other cancers, thyroid cancers are grouped into stages in a way that considers both the subtype of cancer and the patient's age.

    Papillary or follicular thyroid carcinoma (differentiated thyroid cancer) in patients younger than 45Younger people have a low likelihood of dying from differentiated (papillary or follicular) thyroid cancer. The TNM stage groupings for these cancers take this fact into account. So, all people younger than 45 years with papillary thyroid cancer, for example, are stage I if they have no distant spread and stage II if they have distant metastases beyond the neck or upper mediastinal lymph nodes.

    Stage I (any T, any N, M0): The tumor can be any size (any T) and may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).

    Stage II (any T, any N, M1): The tumor can be any size (any T) and may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Papillary or follicular thyroid carcinoma (differentiated thyroid cancer) in patients 45 years and older:Stage I (T1, N0, M0): The tumor is 2 cm or less across and has not grown outside the thyroid (T1). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage II (T2, N0, M0): The tumor is more than 2 cm but not larger than 4 cm across and has not grown outside the thyroid (T2). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage III: One of the following applies:

    T3, N0, M0: The tumor is larger than 4 cm or has grown slightly outside the thyroid (T3), but it has not spread to nearby lymph nodes (N0) or distant sites (M0).

    OR

    T1 to T3, N1a, M0: The tumor is any size and may have grown slightly outside the thyroid (T1 to T3). It has spread to lymph nodes around the thyroid in the neck (N1a) but not to distant sites (M0).

    Stage IVA: One of the following applies:

    T4a, any N, M0: The tumor is any size and has grown beyond the thyroid gland and into nearby tissues of the neck. It may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).

    OR

    T1 to T3, N1b, M0: The tumor is any size and may have grown slightly outside the thyroid gland (T1 to T3). It has spread to certain lymph nodes in the neck (cervical nodes) or to lymph nodes in the upper chest (superior mediastinal nodes) or behind the throat (retropharyngeal nodes) (N1b) but not to distant sites (M0).

    Stage IVB (T4b, any N, M0): The tumor is any size and has grown either back to the spine or into nearby large blood vessels (T4b). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Medullary thyroid carcinoma Stage I (T1, N0, M0): The tumor is 2 cm or less across and has not grown outside the thyroid (T1). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage II: One of the following applies:

    T2, N0, M0: The tumor is more than 2cm but not larger than 4 cm across and has not grown outside the thyroid (T2). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    OR

    T3, N0, M0: The tumor is larger than 4 cm or has grown slightly outside the thyroid (T3), but it has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage III (T1 to T3, N1a, M0): The tumor is any size and may have grown slightly outside the thyroid (T1 to T3). It has spread to lymph nodes around the thyroid in the neck (N1a) but not to distant sites (M0).

    Stage IVA: One of the following applies:

    T4a, any N, M0: The tumor is any size and has grown beyond the thyroid gland and into nearby tissues of the neck (T4a). It may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).

    OR

    T1 to T3, N1b, M0: The tumor is any size and may have grown slightly outside the thyroid gland (T1 to T3). It has spread to certain lymph nodes in the neck (cervical nodes) or to lymph nodes in the upper chest (superior mediastinal nodes) or behind the throat (retropharyngeal nodes) (N1b) but not to distant sites (M0).

    Stage IVB (T4b, any N, M0): The tumor is any size and has grown either back towards the spine or into nearby large blood vessels (T4b). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Anaplastic/undifferentiated thyroid carcinomaAll anaplastic thyroid cancers are considered stage IV, reflecting the poor prognosis of this type of cancer.

    Stage IVA (T4a, any N, M0): The tumor is still within the thyroid and may be resectable (removable by surgery). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVB (T4b, any N, M0): The tumor has grown outside the thyroid and is not resectable. It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside of the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Recurrent cancer
    This is not an actual stage in the TNM system. Cancer that comes back after treatment is called recurrent (or relapsed). Thyroid cancer usually returns in the neck, but it may reappear in another part of the body (for example, lymph nodes, lungs, or bones). Doctors may assign a new stage based on how far the cancer has spread, but this is not usually as formal a process as the original staging. The presence of recurrent disease does not change the original, formal staging.

    If you have any questions about the stage of your cancer or how it affects your treatment, do not hesitate to ask your doctor

    Hope this helps as you get more information. To learn all about Thyroid cancer go to http://www.cancer.org/acs/groups/cid/documents/webcontent/003144-pdf.pdf
  • AliceP
    AliceP Member Posts: 32
    weberdns said:

    You'll get more info after
    removal and RAI. When they remove her thyroid they will check the lymph nodes for involvement. The same thing happens after the RAI. HEre is what these letters mean.

    •T indicates the size of the main (primary) tumor and whether it has grown into nearby areas.
    •N describes the extent of spread to nearby (regional) lymph nodes. Lymph nodes are small bean-shaped collections of immune system cells that are important in fighting infections. Cells from thyroid cancers can travel to lymph nodes in the neck and chest areas.
    •M indicates whether the cancer has spread (metastasized) to other organs of the body. (The most common site of spread of thyroid cancer is to the lungs. The next most common sites are the liver and bones.)
    Numbers or letters appear after T, N, and M to provide more details about each of these factors. The numbers 0 through 4 indicate increasing severity. The letter X means "cannot be assessed because the information is not available."

    T categories for thyroid cancerTX: Primary tumor cannot be assessed

    T0: No evidence of primary tumor

    T1: The tumor is 2 cm (slightly less than an inch) across or smaller and has not grown out of the thyroid.

    T1a: The tumor is 1 cm (less than half an inch) across or smaller and has not grown outside the thyroid.

    T1b: The tumor is larger than 1 cm but not larger than 2 cm across and has not grown outside of the thyroid.

    T2: The tumor is between 2 cm and 4 cm (slightly less than 2 inches) across and has not grown out of the thyroid.

    T3: The tumor is either larger than 4 cm or it has begun to grow a small amount into nearby tissues outside the thyroid.

    T4a: A tumor of any size that has grown extensively beyond the thyroid gland into nearby tissues of the neck, such as the larynx (voice box), trachea (windpipe), esophagus (tube connecting the throat to the stomach), or the nerve to the larynx. This is also called moderately advanced disease.

    T4b: A tumor of any size that has grown either back toward the spine or into nearby large blood vessels. This is also called very advanced disease.

    How is thyroid cancer staged?
    Staging is the process of finding out if and how far a cancer has spread. The stage of a cancer is one of the most important factors in choosing treatment options and predicting your chance for cure and long-term survival.

    Staging is based on the results of the physical exam, biopsy, and imaging tests (ultrasound, CT scan, MRI, chest x-ray, and/or nuclear medicine scans), which are described in the section, "How is thyroid cancer diagnosed?"

    The TNM staging system
    A staging system is a standard way for the cancer care team to summarize how large a cancer is and how far it has spread. Ask your doctor to explain thyroid cancer staging in a way that you understand so that you can take a more active role in making informed decisions about your treatment.

    The most common system used to describe the stages of cancers is the American Joint Committee on Cancer (AJCC) TNM system. The TNM system describes 3 key pieces of information:

    •T indicates the size of the main (primary) tumor and whether it has grown into nearby areas.
    •N describes the extent of spread to nearby (regional) lymph nodes. Lymph nodes are small bean-shaped collections of immune system cells that are important in fighting infections. Cells from thyroid cancers can travel to lymph nodes in the neck and chest areas.
    •M indicates whether the cancer has spread (metastasized) to other organs of the body. (The most common site of spread of thyroid cancer is to the lungs. The next most common sites are the liver and bones.)
    Numbers or letters appear after T, N, and M to provide more details about each of these factors. The numbers 0 through 4 indicate increasing severity. The letter X means "cannot be assessed because the information is not available."

    T categories for thyroid cancerTX: Primary tumor cannot be assessed

    T0: No evidence of primary tumor

    T1: The tumor is 2 cm (slightly less than an inch) across or smaller and has not grown out of the thyroid.

    T1a: The tumor is 1 cm (less than half an inch) across or smaller and has not grown outside the thyroid.

    T1b: The tumor is larger than 1 cm but not larger than 2 cm across and has not grown outside of the thyroid.

    T2: The tumor is between 2 cm and 4 cm (slightly less than 2 inches) across and has not grown out of the thyroid.

    T3: The tumor is either larger than 4 cm or it has begun to grow a small amount into nearby tissues outside the thyroid.

    T4a: A tumor of any size that has grown extensively beyond the thyroid gland into nearby tissues of the neck, such as the larynx (voice box), trachea (windpipe), esophagus (tube connecting the throat to the stomach), or the nerve to the larynx. This is also called moderately advanced disease.

    T4b: A tumor of any size that has grown either back toward the spine or into nearby large blood vessels. This is also called very advanced disease.

    T categories for anaplastic thyroid cancers:T4a: Tumor is still within the thyroid.

    T4b: Tumor has grown outside of the thyroid.

    N categories for thyroid cancerNX: Regional (nearby) lymph nodes cannot be assessed.

    N0: No spread to nearby lymph nodes.

    N1: The cancer has spread to nearby lymph nodes.

    N1a: Spread to lymph nodes around the thyroid in the neck (called pretracheal, paratracheal, and prelaryngeal lymph nodes).

    N1b: Spread to other lymph nodes in the neck (called cervical) or to lymph nodes behind the throat (retropharyngeal) or in the upper chest (superior mediastinal).

    M categories for thyroid cancerM0: No distant metastasis.

    M1: Distant metastasis is present, involving distant lymph nodes, internal organs, bones, etc.

    How is thyroid cancer staged?
    Staging is the process of finding out if and how far a cancer has spread. The stage of a cancer is one of the most important factors in choosing treatment options and predicting your chance for cure and long-term survival.

    Staging is based on the results of the physical exam, biopsy, and imaging tests (ultrasound, CT scan, MRI, chest x-ray, and/or nuclear medicine scans), which are described in the section, "How is thyroid cancer diagnosed?"

    The TNM staging system
    A staging system is a standard way for the cancer care team to summarize how large a cancer is and how far it has spread. Ask your doctor to explain thyroid cancer staging in a way that you understand so that you can take a more active role in making informed decisions about your treatment.

    The most common system used to describe the stages of cancers is the American Joint Committee on Cancer (AJCC) TNM system. The TNM system describes 3 key pieces of information:

    •T indicates the size of the main (primary) tumor and whether it has grown into nearby areas.
    •N describes the extent of spread to nearby (regional) lymph nodes. Lymph nodes are small bean-shaped collections of immune system cells that are important in fighting infections. Cells from thyroid cancers can travel to lymph nodes in the neck and chest areas.
    •M indicates whether the cancer has spread (metastasized) to other organs of the body. (The most common site of spread of thyroid cancer is to the lungs. The next most common sites are the liver and bones.)
    Numbers or letters appear after T, N, and M to provide more details about each of these factors. The numbers 0 through 4 indicate increasing severity. The letter X means "cannot be assessed because the information is not available."

    T categories for thyroid cancerTX: Primary tumor cannot be assessed

    T0: No evidence of primary tumor

    T1: The tumor is 2 cm (slightly less than an inch) across or smaller and has not grown out of the thyroid.

    T1a: The tumor is 1 cm (less than half an inch) across or smaller and has not grown outside the thyroid.

    T1b: The tumor is larger than 1 cm but not larger than 2 cm across and has not grown outside of the thyroid.

    T2: The tumor is between 2 cm and 4 cm (slightly less than 2 inches) across and has not grown out of the thyroid.

    T3: The tumor is either larger than 4 cm or it has begun to grow a small amount into nearby tissues outside the thyroid.

    T4a: A tumor of any size that has grown extensively beyond the thyroid gland into nearby tissues of the neck, such as the larynx (voice box), trachea (windpipe), esophagus (tube connecting the throat to the stomach), or the nerve to the larynx. This is also called moderately advanced disease.

    T4b: A tumor of any size that has grown either back toward the spine or into nearby large blood vessels. This is also called very advanced disease.

    T categories for anaplastic thyroid cancers:T4a: Tumor is still within the thyroid.

    T4b: Tumor has grown outside of the thyroid.

    N categories for thyroid cancerNX: Regional (nearby) lymph nodes cannot be assessed.

    N0: No spread to nearby lymph nodes.

    N1: The cancer has spread to nearby lymph nodes.

    N1a: Spread to lymph nodes around the thyroid in the neck (called pretracheal, paratracheal, and prelaryngeal lymph nodes).

    N1b: Spread to other lymph nodes in the neck (called cervical) or to lymph nodes behind the throat (retropharyngeal) or in the upper chest (superior mediastinal).

    M categories for thyroid cancerM0: No distant metastasis.

    M1: Distant metastasis is present, involving distant lymph nodes, internal organs, bones, etc.

    Stage grouping
    Once the values for T, N, and M are determined, they are combined to find the stage. Stage is expressed as a Roman numeral from I through IV, with letters used to divide a stage into substages. Unlike most other cancers, thyroid cancers are grouped into stages in a way that considers both the subtype of cancer and the patient's age.

    Papillary or follicular thyroid carcinoma (differentiated thyroid cancer) in patients younger than 45Younger people have a low likelihood of dying from differentiated (papillary or follicular) thyroid cancer. The TNM stage groupings for these cancers take this fact into account. So, all people younger than 45 years with papillary thyroid cancer, for example, are stage I if they have no distant spread and stage II if they have distant metastases beyond the neck or upper mediastinal lymph nodes.

    Stage I (any T, any N, M0): The tumor can be any size (any T) and may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).

    Stage II (any T, any N, M1): The tumor can be any size (any T) and may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Papillary or follicular thyroid carcinoma (differentiated thyroid cancer) in patients 45 years and older:Stage I (T1, N0, M0): The tumor is 2 cm or less across and has not grown outside the thyroid (T1). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage II (T2, N0, M0): The tumor is more than 2 cm but not larger than 4 cm across and has not grown outside the thyroid (T2). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage III: One of the following applies:

    T3, N0, M0: The tumor is larger than 4 cm or has grown slightly outside the thyroid (T3), but it has not spread to nearby lymph nodes (N0) or distant sites (M0).

    OR

    T1 to T3, N1a, M0: The tumor is any size and may have grown slightly outside the thyroid (T1 to T3). It has spread to lymph nodes around the thyroid in the neck (N1a) but not to distant sites (M0).

    Stage IVA: One of the following applies:

    T4a, any N, M0: The tumor is any size and has grown beyond the thyroid gland and into nearby tissues of the neck. It may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).

    OR

    T1 to T3, N1b, M0: The tumor is any size and may have grown slightly outside the thyroid gland (T1 to T3). It has spread to certain lymph nodes in the neck (cervical nodes) or to lymph nodes in the upper chest (superior mediastinal nodes) or behind the throat (retropharyngeal nodes) (N1b) but not to distant sites (M0).

    Stage IVB (T4b, any N, M0): The tumor is any size and has grown either back to the spine or into nearby large blood vessels (T4b). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Medullary thyroid carcinoma Stage I (T1, N0, M0): The tumor is 2 cm or less across and has not grown outside the thyroid (T1). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage II: One of the following applies:

    T2, N0, M0: The tumor is more than 2cm but not larger than 4 cm across and has not grown outside the thyroid (T2). It has not spread to nearby lymph nodes (N0) or distant sites (M0).

    OR

    T3, N0, M0: The tumor is larger than 4 cm or has grown slightly outside the thyroid (T3), but it has not spread to nearby lymph nodes (N0) or distant sites (M0).

    Stage III (T1 to T3, N1a, M0): The tumor is any size and may have grown slightly outside the thyroid (T1 to T3). It has spread to lymph nodes around the thyroid in the neck (N1a) but not to distant sites (M0).

    Stage IVA: One of the following applies:

    T4a, any N, M0: The tumor is any size and has grown beyond the thyroid gland and into nearby tissues of the neck (T4a). It may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).

    OR

    T1 to T3, N1b, M0: The tumor is any size and may have grown slightly outside the thyroid gland (T1 to T3). It has spread to certain lymph nodes in the neck (cervical nodes) or to lymph nodes in the upper chest (superior mediastinal nodes) or behind the throat (retropharyngeal nodes) (N1b) but not to distant sites (M0).

    Stage IVB (T4b, any N, M0): The tumor is any size and has grown either back towards the spine or into nearby large blood vessels (T4b). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Anaplastic/undifferentiated thyroid carcinomaAll anaplastic thyroid cancers are considered stage IV, reflecting the poor prognosis of this type of cancer.

    Stage IVA (T4a, any N, M0): The tumor is still within the thyroid and may be resectable (removable by surgery). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVB (T4b, any N, M0): The tumor has grown outside the thyroid and is not resectable. It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).

    Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside of the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).

    Recurrent cancer
    This is not an actual stage in the TNM system. Cancer that comes back after treatment is called recurrent (or relapsed). Thyroid cancer usually returns in the neck, but it may reappear in another part of the body (for example, lymph nodes, lungs, or bones). Doctors may assign a new stage based on how far the cancer has spread, but this is not usually as formal a process as the original staging. The presence of recurrent disease does not change the original, formal staging.

    If you have any questions about the stage of your cancer or how it affects your treatment, do not hesitate to ask your doctor

    Hope this helps as you get more information. To learn all about Thyroid cancer go to http://www.cancer.org/acs/groups/cid/documents/webcontent/003144-pdf.pdf

    Bilateral neck dissection is done
    Last Friday I had a 5 1/2 hour bilateral neck dissection. This was the 4th surgery for thyroid cancer. Two recurrent HCC intravascular tumors were removed (4.5 cm and 0.6 cm). Several lymph nodes were removed and none of those were malignant. I spent two nights in the hospital and am recovering well at home.

    I never received a staging of the cancer when I first had it in 2006. I wsa so ill informed that I never asked about it.

    Next I'll be seeing a radiology oncologist and will most likely be getting EBR treatments.

    I am curious as to what screenings I should be getting in the future. It seems that my doctors and I were way to cavalier after my first surgery. In hindsight I know I should have been followed more closely. I am just lucky that my gut told me the small lump I found on my neck in February needed to be explored. Low and behold, there were three recurrant HCC tumors growing in my neck. (One was removed in May). Can anyone give me an idea of what tests they would expect to have and at what intervals given my history. I don't want to be overly concerned, but I also want to keep on top of this disease. I really appreciate your sharing your thoughts.
  • graceam92
    graceam92 Member Posts: 1
    biskie said:

    Hurthle Cell Journey
    My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.

    Biskie-I am a 17 year old
    Biskie-I am a 17 year old that was diagnosed with hurthle cell carcinoma just today and i'm scared out of my mind- i would love to talk to your daughter, i think it would really help me to talk to someone who's in my position at this point. Is there any way i could contact her/would she like to talk to me?
  • biskie
    biskie Member Posts: 9
    graceam92 said:

    Biskie-I am a 17 year old
    Biskie-I am a 17 year old that was diagnosed with hurthle cell carcinoma just today and i'm scared out of my mind- i would love to talk to your daughter, i think it would really help me to talk to someone who's in my position at this point. Is there any way i could contact her/would she like to talk to me?

    Young Diagnosis
    Hi graceam92... Sorry I took so long to tune back in to the forum. I hope you are still there. I can imagine how you feel. I will help my daughter get in touch with you. You two will have much in common.
  • wlangley
    wlangley Member Posts: 9
    biskie said:

    Hurthle Cell Journey
    My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.

    Hurthle Cell Carcinoma
    I am sorry to be posting a month after your post. Dr. Lisa Orloff, Chief, Head and Neck/ Endochrine Surgery and Oncology at UCSF in one of the top experts in the country in thyroid cancer and has extensive experience with HCC. Hopefully you are in contact with her and her department. I was diagnosed with HCC in May 2009, have had surgery and RAI and then 9 months of tests as follow up. I have an endocrinologist trained at UCSF but associated with CPMC. The team at UCSF--Dr. Orloff and Dr. Jeanne Quivey who is an expert radio-oncologist in particular are tops in the country.

    I hope you have found the right place for your daughter.
  • wlangley
    wlangley Member Posts: 9
    biskie said:

    Hurthle Cell Journey
    My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.

    Hurthle Cell Carcinoma
    I am sorry to be posting a month after your post. Dr. Lisa Orloff, Chief, Head and Neck/ Endochrine Surgery and Oncology at UCSF in one of the top experts in the country in thyroid cancer and has extensive experience with HCC. Hopefully you are in contact with her and her department. I was diagnosed with HCC in May 2009, have had surgery and RAI and then 9 months of tests as follow up. I have an endocrinologist trained at UCSF but associated with CPMC. The team at UCSF--Dr. Orloff and Dr. Jeanne Quivey who is an expert radio-oncologist in particular are tops in the country.

    I hope you have found the right place for your daughter.
  • Sisu61
    Sisu61 Member Posts: 10
    fishery said:

    Karleen
    I have an appt. with the Endo. on June 3td for blood test and just a check up I guess??? Then back to the Surgen on the 9th. for a recheck....How long did it take for all the swelling to go away after you had your thyroid taken out? I am still pretty swollen and still very little voice...I will request the thyroglobin blood test, I know that the CBC, Metabolic, T4 and TSH levels have been ordered...I am begining to become Hypo. My hair is falling out and I am very tired. I was hyper. before...I just want to feel good and have my voice back....I am very worried about the what if's...In Oct. my thyroid was normal by Feb it had changed that much...So the swelling or lump that I have worries me....I don't know...It is shaped like the letter L and is on my right side of the neck...I had my thyroid taken out on April 20th, three weeks ago. I don't know if it because I am worried that I am making to much of this or if it is something that needs to be looked at...I don't know what is normal....Thank you for your input and best of luck to you
    Yetta

    Sorry Yetta I just have been
    Sorry Yetta I just have been busy and not checking this site. The swelling took about a month before I could eat again. It was worse because they had to cut through my neck muscle. My TSH is still high but coming down and I am still loosing lots of hair. It also went curly from the radio-active iodine. Alot has happened, my mom died that day after I got out of isolation from the radio-active iodine. She had non-Hodgkins lymphoma which had gone to the brain but otherwise was cleared from the body. I have been feeling tired and weak. My muscles are really weak after not doing a whole lot when I had been so hypo. I started getting some energy in mid-August. I am waiting on a pet scan on September 13th and now the ex is taking me to court to decrease his child support. Things have to get better soon! My mom's brother also was diagnosed with pancreatic cancer about the same time mom and I were both diagnosed with our cancers in December.

    Hope things are better for you.

    Karleen
  • redfox
    redfox Member Posts: 3
    New to the game
    Hi: I too have hurthle cell cancer. Just had thyroid removed in April. After nearly 3 months, they finally tell me about hurthle. The bad news parts. Mind you, I had been to an onocology doctor, that said "dont want to put you through anything unnessary (I felt like I had been before a medical board, because I am 64 years old. So now, my endoctrine doctor, says, "I want you to get a second opinion". I am going to Shands Hospital in Gainesville, Fla on the 13th for consultation. I dont know where I stand. I do believe that there has to be a primary tumor somewhere else, as Hrthle ssettles in the lungs and the bones. I also read that it could be caused by too much radiatiion. So what have you found out? We need to keep in touch as new information develops. I wish you the best and please write. Pat
  • biskie
    biskie Member Posts: 9
    graceam92 said:

    Biskie-I am a 17 year old
    Biskie-I am a 17 year old that was diagnosed with hurthle cell carcinoma just today and i'm scared out of my mind- i would love to talk to your daughter, i think it would really help me to talk to someone who's in my position at this point. Is there any way i could contact her/would she like to talk to me?

    graceam92 let's talk
    Hi again graceam92. I haven't seen another post from you. I hope you find your way back here. My daughter wants to contact you, but we don't have a way to find you. You can write to me at [email protected]

    Put "From Grace" in the subject so I will recognize you. She just had her thyroid out. We are waiting for the labs to come back to let us know the next steps for treatment. Trying to stay positive and finding fun. Please write.
  • samanjan
    samanjan Member Posts: 40
    redfox said:

    New to the game
    Hi: I too have hurthle cell cancer. Just had thyroid removed in April. After nearly 3 months, they finally tell me about hurthle. The bad news parts. Mind you, I had been to an onocology doctor, that said "dont want to put you through anything unnessary (I felt like I had been before a medical board, because I am 64 years old. So now, my endoctrine doctor, says, "I want you to get a second opinion". I am going to Shands Hospital in Gainesville, Fla on the 13th for consultation. I dont know where I stand. I do believe that there has to be a primary tumor somewhere else, as Hrthle ssettles in the lungs and the bones. I also read that it could be caused by too much radiatiion. So what have you found out? We need to keep in touch as new information develops. I wish you the best and please write. Pat

    The reference you make to lungs and bones are the "usual" places that Hurthle Cell is found when it recurs. Hurthle is found in the neck. The third place know for recurrence is the central nervous system, although I personally know of an instance where it was found in the liver. Whether it comes back or not is usually determined by what they found when they did your initial stage of TNM after surgery to remove our thyroid. Ask for pathological report. How invasive was the cancer u[pn detection...which stage I,II,III, IV? Node involvement? Distant metastis?

    You are right about one thing...it is a radiosensitive tumor. Avoid unnecessary x-rays including dental, if possible.
    Good luck,
    Elaine
  • gecco
    gecco Member Posts: 1
    bklyn718 said:

    new
    Hello everyone -

    My mom was just diagnosed with Hurthle cell cancer and I cannot express how helpful, comforting and educational it has been for me to have found this group - It seems like months have past since I started reading the posts but in fact it has just been less than 48 hrs.

    Everyone told me that a thyroiddectomy is a common and safe procedure. TONS of people have had it - mothers of friends, friends of friends --- It has been 4 days since the surgury and mom is still in hospital - battling with calcium levels that have dropped as low as 5.8. The surgeon said the operation was difficult with lots of inflamation.

    AS she battles with levels, I battle with nurses who keep telling me that moms meds are on the way - pharmacy who says meds have been sent up -- different "senior resident students" every night --- makes me feel like a trouble maker...

    The endo said results won't be in till next week - But he said that its hard to detect if the cells of hurtle cancer are malignant or beign - so he recomended radioiodine and then he made it almost seem like the best thing to do is to wait --- which I will not do.

    AND so does anyone know of any treatment centers in nyc - I guess Cornell and Presbyterian hospitals????

    THANkS everyone for sharing - it has truelly helped me a great deal to read your stories - I will keep everyone in my prayers as i kick some Hurthle cell cancer ****.

    Lobectomy or TT?
    During treatment for breast cancer, I underwent a full-body PET scan and a 9 mm lesion surfaced in my left thyroid lobe. I underwent a FNB and the pathology report came back as showing Hurthle cells with prominent vasculature. The differential diagnosis was adenoma or Hurthle cell neoplasm. My ultrasound did not show anything of concern in the right node (or at least I don't think it did -- I just talked to the radiologist during the procedure and have not yet seen the report). My head and neck surgeon and my endocrinologist and just about everything I've read on the internet suggests that surgery is the only way to deal with the uncertainty of the neoplasm.

    Because I am taking a hormone drug for breast cancer (which makes me more fatigued and which accentuates all the usual menopausal side effects), I preferred to go through a lobectomy first, since I was advised that I have a 75% chance of avoiding thyroid medication if I only need a lobectomy. I do not want to deal with thyroid medication on top of the hormone treatment for breast cancer, if I can avoid it.

    Anyway, I am meeting again with my head and neck surgeon, who came highly recommended, and I know from my preliminary discussion with him that he is going to push me to have a total thyroidectomy. One of my doctor friends then told me that he felt that my surgeon was being too aggressive in his approach. But, he is not a specialist in this field.

    I am starting to obsess a bit since my surgery is scheduled soon, and I have a few questions:

    For those of you who went through the two-surgery process to remove your thyroid, was it that much of an ordeal to undergo two surgeries to remove your entire thyroid, rather than having it done all at once?

    And, for those of you who have had your entire thyroid removed, how long did it take before you were able to function and get back to work, if you had to? I am admittedly scared about adjusting to the post-thyroid world.

    I discovered this chat room and it seems to be one of the best resources for info about Hurthle cancer on the internet. I found it very, very helpful to read everyone's comments.

    By the way, my breast cancer was at a relatively early stage and, after the usual surgery, chemo etc.., it seems much less threatening. It has also thickened my skin for this latest journey.

    Thank you all for any info or input you have.
  • samanjan
    samanjan Member Posts: 40
    samanjan said:

    The reference you make to lungs and bones are the "usual" places that Hurthle Cell is found when it recurs. Hurthle is found in the neck. The third place know for recurrence is the central nervous system, although I personally know of an instance where it was found in the liver. Whether it comes back or not is usually determined by what they found when they did your initial stage of TNM after surgery to remove our thyroid. Ask for pathological report. How invasive was the cancer u[pn detection...which stage I,II,III, IV? Node involvement? Distant metastis?

    You are right about one thing...it is a radiosensitive tumor. Avoid unnecessary x-rays including dental, if possible.
    Good luck,
    Elaine

    Great News!!!
    Just at Johns Hopkins last week and my doctor pronounced me "cancer free" for now. What a nice Thanksgiving present. Nearly two years into this abyss, but not ready to give in!
    I only need an ultrasound yearly now and a visit with my endocrinologist twice yearly. I get blood work done every three months since I am self pay. I feel there is no need to let something go an extra three months, especially Hurthle Cell Carcinoma.
    It has been a stretch getting my Synthroid adjusted so that I have adequate energy without making my body hyperthyroid, but it seems we have managed that as well.
    I'll keep checking on everyone.
    Have a wonderful holiday.
    Elaine
  • sfl67
    sfl67 Member Posts: 55
    samanjan said:

    Great News!!!
    Just at Johns Hopkins last week and my doctor pronounced me "cancer free" for now. What a nice Thanksgiving present. Nearly two years into this abyss, but not ready to give in!
    I only need an ultrasound yearly now and a visit with my endocrinologist twice yearly. I get blood work done every three months since I am self pay. I feel there is no need to let something go an extra three months, especially Hurthle Cell Carcinoma.
    It has been a stretch getting my Synthroid adjusted so that I have adequate energy without making my body hyperthyroid, but it seems we have managed that as well.
    I'll keep checking on everyone.
    Have a wonderful holiday.
    Elaine

    Congratulations!!!
    Elaine,

    I am so happy you were given such great news! Wishing you and yours a happy holiday season.

    Best wishes,
    Shelia
  • sfl67
    sfl67 Member Posts: 55
    samanjan said:

    Great News!!!
    Just at Johns Hopkins last week and my doctor pronounced me "cancer free" for now. What a nice Thanksgiving present. Nearly two years into this abyss, but not ready to give in!
    I only need an ultrasound yearly now and a visit with my endocrinologist twice yearly. I get blood work done every three months since I am self pay. I feel there is no need to let something go an extra three months, especially Hurthle Cell Carcinoma.
    It has been a stretch getting my Synthroid adjusted so that I have adequate energy without making my body hyperthyroid, but it seems we have managed that as well.
    I'll keep checking on everyone.
    Have a wonderful holiday.
    Elaine

    Congratulations!!!
    Elaine,

    I am so happy you were given such great news! Wishing you and yours a happy holiday season.

    Best wishes,
    Shelia