Looking for others that have been diagnosed with two different types of Thyroid Cancer at the same t

csm2007
csm2007 Member Posts: 25
edited February 2011 in Thyroid Cancer #1
I am searching for others that have been diagnosed with two types of Thyroid Cancer at the same time. I have been diagnosed with Hurthle Cell Carcinoma / tumor 4.1 cm 33 grams in one lobe and Papillary Carcinoma / tumor 1.1 cm and 9 grams with vascular and soft tissue invasion in the other. I have had two surgeries now, one for removal of each lobe. I would like to know how your treatment was handled, and how you are doing now. Thanks!

Comments

  • nasher
    nasher Member Posts: 505 Member
    #2
    papillary and follicular
    on Feb 22 2010 I had the right side of my thyroid removed and they found

    follicular carcinoma minimally invasive (7.1 cm) and 6mm papillary carcinoma w/ adjacent 2-3mm papillary carcinoma another section 6mm papillary carcinoma and right parathyroid lymph node with thyroid carcinoma 8mm.

    they removed the left side on Mar 9 2010 no cancer was found on that side

    on May 5th 2010 I had 175 mCi of I-131.

    all in all I am doing well.

    I have a multidude of other problems some related some not but I am liveing and working and doing as much as I can.

    the story of my first year from discovery is here http://csn.cancer.org/node/204377

    if you have any questions please ask if you have any comments or sugestions please give :)

    Craig
  • csm2007
    csm2007 Member Posts: 25
    #3
    nasher said:

    papillary and follicular
    on Feb 22 2010 I had the right side of my thyroid removed and they found

    follicular carcinoma minimally invasive (7.1 cm) and 6mm papillary carcinoma w/ adjacent 2-3mm papillary carcinoma another section 6mm papillary carcinoma and right parathyroid lymph node with thyroid carcinoma 8mm.

    they removed the left side on Mar 9 2010 no cancer was found on that side

    on May 5th 2010 I had 175 mCi of I-131.

    all in all I am doing well.

    I have a multidude of other problems some related some not but I am liveing and working and doing as much as I can.

    the story of my first year from discovery is here http://csn.cancer.org/node/204377

    if you have any questions please ask if you have any comments or sugestions please give :)

    Craig

    Thanks for your post Craig. I am just starting this journey, and I am trying not to let the new discovery of another cancer on the other lobe get me down. I am learning alot, but also still have ALOT to learn. Best of luck to you as well!
  • slippinandsliddin
    slippinandsliddin Member Posts: 10
    #4
    Donno if I count-
    mine is
    Donno if I count-

    mine is Papillary - follicular variant- follicular architceture- 2 tumors- is that two types??
  • nasher
    nasher Member Posts: 505 Member
    #5
    slippinandsliddin said:

    Donno if I count-
    mine is
    Donno if I count-

    mine is Papillary - follicular variant- follicular architceture- 2 tumors- is that two types??

    yep thats 2 thyroid cancers
    yep thats 2 thyroid cancers Papillary and Follicular.

    Have you seen the medical report of it cause it will tell you alot about the cancer and stageing as well as other factors

    "follicular carcinoma minimally invasive 7.1 cm and 6mm papillary carcinoma w/ adjacent 2-3mm papillary carcinoma another section 6mm papillary carcinoma and right parathyroid lymph node with thyroid carcinoma 8mm."

    so for me its a follicular cancer 7.1 cm in size (poolball)
    and multiple papillary cancers area's (multifocal papillary cancer)
    with thyroid cancer on the parathyroid that was in the thyroid tissue.

    be sure to check the medical info they give you and when they ask if you have any questions about... besure you ask for a copy of the reports and such it might take some time for you to turn the Doctor Jargon into something resembling english but it will tell you alot more.
  • slippinandsliddin
    slippinandsliddin Member Posts: 10
    #6
    nasher said:

    yep thats 2 thyroid cancers
    yep thats 2 thyroid cancers Papillary and Follicular.

    Have you seen the medical report of it cause it will tell you alot about the cancer and stageing as well as other factors

    "follicular carcinoma minimally invasive 7.1 cm and 6mm papillary carcinoma w/ adjacent 2-3mm papillary carcinoma another section 6mm papillary carcinoma and right parathyroid lymph node with thyroid carcinoma 8mm."

    so for me its a follicular cancer 7.1 cm in size (poolball)
    and multiple papillary cancers area's (multifocal papillary cancer)
    with thyroid cancer on the parathyroid that was in the thyroid tissue.

    be sure to check the medical info they give you and when they ask if you have any questions about... besure you ask for a copy of the reports and such it might take some time for you to turn the Doctor Jargon into something resembling english but it will tell you alot more.

    Yep I have the repot
    T1a I
    Yep I have the repot

    T1a I think is the staging

    says capsular invasion present and partially encapsulated- 1 cm- not seen on margins

    2 susp. lymph nodes removed and negative

    both tumors/lymph same side

    Is this bad? or not as good?
  • nasher
    nasher Member Posts: 505 Member
    #7
    slippinandsliddin said:

    Yep I have the repot
    T1a I
    Yep I have the repot

    T1a I think is the staging

    says capsular invasion present and partially encapsulated- 1 cm- not seen on margins

    2 susp. lymph nodes removed and negative

    both tumors/lymph same side

    Is this bad? or not as good?

    i am sure there was alot
    i am sure there was alot more in the report than that (my report was almost 2 pages long)

    yes from what you posted it looks to me that if they left it too much longer it may have left the thyroid but it looks like it didnt leave the thyroid. less than 3cm in size is a lower risk of reoccourance so that looks good as well

    the 2 lymph noded did not have cancer so thats good

    sounds like they think they got it all and it was early in the cancer.

    so i would say good but only time will tell
  • slippinandsliddin
    slippinandsliddin Member Posts: 10
    #8
    nasher said:

    i am sure there was alot
    i am sure there was alot more in the report than that (my report was almost 2 pages long)

    yes from what you posted it looks to me that if they left it too much longer it may have left the thyroid but it looks like it didnt leave the thyroid. less than 3cm in size is a lower risk of reoccourance so that looks good as well

    the 2 lymph noded did not have cancer so thats good

    sounds like they think they got it all and it was early in the cancer.

    so i would say good but only time will tell

    yes it is 2 pages ... I also
    yes it is 2 pages ... I also ahve the surgeon report .. this says

    Left said was form and right was adherent and had to be dissected ... I donoo if taht is bad- and that there is huge inflammatory response from hashimotos ... donno what to look for- nothing in surgeons about removing lymph nodes..

    BUt I also ahve ultrasound report- and the emasurements are not the sam eon the removed thyroid.. and also says there is a nodule on one side- and nothing in pathology report on anything in that side ... ??
  • csm2007
    csm2007 Member Posts: 25
    #9
    slippinandsliddin said:

    yes it is 2 pages ... I also
    yes it is 2 pages ... I also ahve the surgeon report .. this says

    Left said was form and right was adherent and had to be dissected ... I donoo if taht is bad- and that there is huge inflammatory response from hashimotos ... donno what to look for- nothing in surgeons about removing lymph nodes..

    BUt I also ahve ultrasound report- and the emasurements are not the sam eon the removed thyroid.. and also says there is a nodule on one side- and nothing in pathology report on anything in that side ... ??

    looking for others....
    Thank you for posting, I'm sorry I did not get to log on for the past few days, I was admitted to the hospital. But I'm on the mend now. Best wishes on your recovery!
  • cfeline5
    cfeline5 Member Posts: 2
    #10
    two types
    diagnosed with follicular variant papillary carcinoma in march '06. Had apartial then total after patholy came back as cancer. Have had 3 doses of RAI; one after surgery and then 2 more after bloodwork revealed recurrences. Have been on 300 mcg of synthroid for over a year(started at .75 and has been getting increased in increments) I have never been symptom free. Three weeks ago i found out through ultrasound that there is now a mass on the right sode of thyroid bed...oncology surgeon did another u/s 2 weeks after and discovered that another had developed on the left side. This scares me because on the first u/s, i pointed out the mass on the right side and there was nothing on the left, now 2 weeks later there is a mass on the left. Now have to do thyrogen injections, RAI dose, PET scan..scared that my worse fear has come true, that the cancer has metastisizzed
  • sunnyaz
    sunnyaz Member Posts: 582
    #11
    cfeline5 said:

    two types
    diagnosed with follicular variant papillary carcinoma in march '06. Had apartial then total after patholy came back as cancer. Have had 3 doses of RAI; one after surgery and then 2 more after bloodwork revealed recurrences. Have been on 300 mcg of synthroid for over a year(started at .75 and has been getting increased in increments) I have never been symptom free. Three weeks ago i found out through ultrasound that there is now a mass on the right sode of thyroid bed...oncology surgeon did another u/s 2 weeks after and discovered that another had developed on the left side. This scares me because on the first u/s, i pointed out the mass on the right side and there was nothing on the left, now 2 weeks later there is a mass on the left. Now have to do thyrogen injections, RAI dose, PET scan..scared that my worse fear has come true, that the cancer has metastisizzed

    To cfeline5
    I am praying for you.
    Julie-SunnyAZ
  • csm2007
    csm2007 Member Posts: 25
    #12
    cfeline5 said:

    two types
    diagnosed with follicular variant papillary carcinoma in march '06. Had apartial then total after patholy came back as cancer. Have had 3 doses of RAI; one after surgery and then 2 more after bloodwork revealed recurrences. Have been on 300 mcg of synthroid for over a year(started at .75 and has been getting increased in increments) I have never been symptom free. Three weeks ago i found out through ultrasound that there is now a mass on the right sode of thyroid bed...oncology surgeon did another u/s 2 weeks after and discovered that another had developed on the left side. This scares me because on the first u/s, i pointed out the mass on the right side and there was nothing on the left, now 2 weeks later there is a mass on the left. Now have to do thyrogen injections, RAI dose, PET scan..scared that my worse fear has come true, that the cancer has metastisizzed

    To CFeline5
    Thank you for posting, I am sorry to hear you are still dealing with new findings. Please keep us posted.
  • angelboatright
    angelboatright Member Posts: 4
    #13
    In December, 2009, I had my
    In December, 2009, I had my left thyroid removed after a biospy diagnosis for a 1 cm on my left for Hurthle Cells. After the surgery, the pathology report came back as Hurthle Cell Adenoma, however, I was diagnosed with Follicular variant of Papillary Carcinoma .8 cm which had spread to the surgical margin. Therefore, I had my right thyroid removed in February, 2010 and a dose of RAI in March.

    The last year has been quite challenging with the monthly appointments for blood work/doctor appointments, the weight gain, muscle spasms, heart palpitations, lethargic, memory/concentration. Looking back over the last year as I am about to undergo my annual testing with Thyrogen and TBS, stay in tune with your body. At times, I didn't realize I was on the wrong levels of synthyroid which has been quite aggravating and several months over the last year, my levels were changed.

    Just curious, did the doctor's ever talk to you about where you lived as you may of got exposed by some type of radiation to develop Hurthle Cell Carcinoma??? I'm clueless on my end.
  • csm2007
    csm2007 Member Posts: 25
    #14
    angelboatright said:

    In December, 2009, I had my
    In December, 2009, I had my left thyroid removed after a biospy diagnosis for a 1 cm on my left for Hurthle Cells. After the surgery, the pathology report came back as Hurthle Cell Adenoma, however, I was diagnosed with Follicular variant of Papillary Carcinoma .8 cm which had spread to the surgical margin. Therefore, I had my right thyroid removed in February, 2010 and a dose of RAI in March.

    The last year has been quite challenging with the monthly appointments for blood work/doctor appointments, the weight gain, muscle spasms, heart palpitations, lethargic, memory/concentration. Looking back over the last year as I am about to undergo my annual testing with Thyrogen and TBS, stay in tune with your body. At times, I didn't realize I was on the wrong levels of synthyroid which has been quite aggravating and several months over the last year, my levels were changed.

    Just curious, did the doctor's ever talk to you about where you lived as you may of got exposed by some type of radiation to develop Hurthle Cell Carcinoma??? I'm clueless on my end.

    To: angelboatright
    Like yourself I am not sure where I may have been exposed to radiation to have Hurthle cell carcinoma. I'm still waiting for RAI treatment which is set for the second week of April. I hope this first RAI treatment works and I can begin a seminormal life again! Best of luck to you in your journey, thanks for posting.
  • nasher
    nasher Member Posts: 505 Member
    #15
    angelboatright said:

    In December, 2009, I had my
    In December, 2009, I had my left thyroid removed after a biospy diagnosis for a 1 cm on my left for Hurthle Cells. After the surgery, the pathology report came back as Hurthle Cell Adenoma, however, I was diagnosed with Follicular variant of Papillary Carcinoma .8 cm which had spread to the surgical margin. Therefore, I had my right thyroid removed in February, 2010 and a dose of RAI in March.

    The last year has been quite challenging with the monthly appointments for blood work/doctor appointments, the weight gain, muscle spasms, heart palpitations, lethargic, memory/concentration. Looking back over the last year as I am about to undergo my annual testing with Thyrogen and TBS, stay in tune with your body. At times, I didn't realize I was on the wrong levels of synthyroid which has been quite aggravating and several months over the last year, my levels were changed.

    Just curious, did the doctor's ever talk to you about where you lived as you may of got exposed by some type of radiation to develop Hurthle Cell Carcinoma??? I'm clueless on my end.

    ...
    well I work with nuclear
    ...

    well I work with nuclear power. I dont know if that is why i got thyroid cancer or not

    I was also alive during chernobal so i dont know if that affected the chance of thyroid cancer.

    there are lots of questions about radiation and getting cancer and how much is good or bad or whatever.

    unfortunatly the only way we can get the information is by trial and error and looking at history of exposure and the like
  • sr_mccreery
    sr_mccreery Member Posts: 12
    #16
    Hurthle cell
    Hello. I have not been diagnosed with two types at one time, but do have Hurthle cell and that's scary enough. I can't imagine what you're feeling. I am so sorry. BUT, what I find interesting about you is that your user name is csm. Would that possibly stand for College of Southern Maryland?

    Renee
  • sr_mccreery
    sr_mccreery Member Posts: 12
    #17
    csm2007 said:

    To CFeline5
    Thank you for posting, I am sorry to hear you are still dealing with new findings. Please keep us posted.

    Hurthle cell
    What does the csm in your username stand for? College of Southern Maryland? If so, we need to talk because you're in my neck of the woods :) Renee
  • csm2007
    csm2007 Member Posts: 25
    #18
    sr_mccreery said:

    Hurthle cell
    Hello. I have not been diagnosed with two types at one time, but do have Hurthle cell and that's scary enough. I can't imagine what you're feeling. I am so sorry. BUT, what I find interesting about you is that your user name is csm. Would that possibly stand for College of Southern Maryland?

    Renee

    Hurthle cell
    Hi Renee,
    No, it doesn't stand for College of Southern Maryland, csm are my initials and 2007 is the year they became csm when I was married. I live in Florida, and as of yet, have not been to the State of Maryland. Maybe one day.... It's nice to meet you! Best of luck in your journey.

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