A little discouraged newbie here **Update**

LBelle
LBelle Member Posts: 42
edited March 2014 in Thyroid Cancer #1
** UPDATE-DECEMBER 4 2009**
The final DX- Hurthle Cells Adenoma- all seven lymph nodes and whole thyroid were removed and showed not cancerous. The sonogram originally showed 2 CM mass on right thyroid but after surgery it showed 3 CM. I am now on 137 mg Lev and vitamin D 50,000. Vitamin D works great for me and there are no way I can live without them. As it wears off, I'd get beyond hypo. I need to increase the dosage of Lev since I'd get hypo/hyper up and down like crazy. Also, I've gained a few pounds. My emotional and mental states are great- no mood swings or anything. Thanks so much for your supports and advices everyone during the last few months.
*****

October 5,2009


Ok, I had peddled all over this thyroid forum and found none that is very close to my situation. If you don't feel like going to my "About Me" page, that's okay. I'll make it brief as possible here.

*2 cm mass on right thyroid
*biopsy came up with "possible", "or", "could", "might" with all the names of cancer cells. Endo specialist said that the second reading will come up the same. So is it true that the biopsy isn't always accurated? My physican wrote that down on the biopsy appointment slip. Also Endo said that I have 20% chance of having cancer and if it's cancer, it's 80% papillary cancer. He also felt my other thyroid feeling "not normal".

*planned to have surgery from the prominent ENT (Ear Nose Throat)surgeon at Johns Hopkins (at least three hours from here) on Oct 17th but the stand-by surgery got snatched up by someone else. She offered to have surgery on me on Christmas Eve and of course I declined. Dr assured my husband that there is no rush to have surgery. Is that bad or good??? So I'll have surgery for a total thyroidectomy (my choice to get over with it) in early January.


Your input would be greatly appreciated and I do HOPE that all of you are doing okay so far!

Comments

  • LBelle
    LBelle Member Posts: 42
    #2
    Oops...
    My physican wrote that down on the biopsy appointment slip.

    I meant to type "atypical biopsy"- what's that mean to you? I have no idea since I'm still lost and bombarded with both good and bad news of THYCA patients.
  • mainstreet39154
    mainstreet39154 Member Posts: 8
    #3
    Welcome to the strange world
    Welcome to the strange world of Thyroid Cancer! I think back on when I was first told "cancer" and that was a crazy day for me. It took a couple of days for me to actually say it. So fast forward 6 months and I say it every day. But for you, it sounds like you are at step one. Take it slowly. If your bioposy was inconclusive, you won't really know until pathology from surgery. So don't borrow trouble, just try to research as much as you can, ask questions, don't scare yourself with all of the crazy information out there and try to take it one day at a time until all of the pieces fall together for you. My TT was in April this year and the recovery was really not bad at all. You have alot of steps ahead of you so remember one at a time... Good luck to you.
  • TodayIsAGoodDay
    TodayIsAGoodDay Member Posts: 6
    #4
    Keep your chin up.
    I'm not an expert and very new to all this....

    Your story is very similar to mine. Had a 3 cm nodule on rt thyroid, which came back as "atypical cells". They removed the right side, and assured me that it was not cancer. When the pathology came back they found cancer in a nodule that wasn't on their radar. The test to determine if it's cancer is most accurate when they test what they remove.

    I'm a nut case...I called the surgeon my doctor recommended and she said I could be put on a waiting list. I called someone else. If you don't want to wait I think you should find another surgeon. Mine was removed by a general surgeon who did a beautiful job.

    If you are uncomfortable with waiting I think you should really find another surgeon. I waited 2 weeks to have the rt side removed, and don't think I could mentally wait any longer. I have an appt with the surgeon on WED for my follow up and to book the removal of the left side which also now has a questionable nodule.

    You sound like a very strong woman, I think whatever you decide you'll be fine. It's very scary and overwhelming but it seems to be getting easier with time.
  • LBelle
    LBelle Member Posts: 42
    #5
    mainstreet39154 said:

    Welcome to the strange world
    Welcome to the strange world of Thyroid Cancer! I think back on when I was first told "cancer" and that was a crazy day for me. It took a couple of days for me to actually say it. So fast forward 6 months and I say it every day. But for you, it sounds like you are at step one. Take it slowly. If your bioposy was inconclusive, you won't really know until pathology from surgery. So don't borrow trouble, just try to research as much as you can, ask questions, don't scare yourself with all of the crazy information out there and try to take it one day at a time until all of the pieces fall together for you. My TT was in April this year and the recovery was really not bad at all. You have alot of steps ahead of you so remember one at a time... Good luck to you.

    Thanks so much Mainstreet!
    That makes sense about not scaring myself with all the crazy informations- especially from online sites! I'm glad that you are doing great!
  • LBelle
    LBelle Member Posts: 42
    #6
    TodayIsAGoodDay said:

    Keep your chin up.
    I'm not an expert and very new to all this....

    Your story is very similar to mine. Had a 3 cm nodule on rt thyroid, which came back as "atypical cells". They removed the right side, and assured me that it was not cancer. When the pathology came back they found cancer in a nodule that wasn't on their radar. The test to determine if it's cancer is most accurate when they test what they remove.

    I'm a nut case...I called the surgeon my doctor recommended and she said I could be put on a waiting list. I called someone else. If you don't want to wait I think you should find another surgeon. Mine was removed by a general surgeon who did a beautiful job.

    If you are uncomfortable with waiting I think you should really find another surgeon. I waited 2 weeks to have the rt side removed, and don't think I could mentally wait any longer. I have an appt with the surgeon on WED for my follow up and to book the removal of the left side which also now has a questionable nodule.

    You sound like a very strong woman, I think whatever you decide you'll be fine. It's very scary and overwhelming but it seems to be getting easier with time.

    Thanks TIAGD!
    Yes I feel a little uncomfortable of waiting because thinking about "c" still hiding in my thyroid makes me nervous. I'll talk to my husband tonight and hopefully the first surgeon we talked last week will get it done asap...
  • one day at a time
    one day at a time Member Posts: 2
    #7
    LBelle said:

    Thanks TIAGD!
    Yes I feel a little uncomfortable of waiting because thinking about "c" still hiding in my thyroid makes me nervous. I'll talk to my husband tonight and hopefully the first surgeon we talked last week will get it done asap...

    I just had a total
    I just had a total thyroidectomy about 4 weeks ago due to papillary thyroid carcinoma. What I have heard from so many people is that this is the best cancer to have and it is very slow growing. I know of a young woman who found out while she was pregnant and had to wait to have the surgery until after she delivered her child. But that still doesn't mean you should have to wait that long. Even though they say this is the "best" cancer to have, the word cancer just does something to you. And waiting is one of the hardest parts. I hope you can get this done with soon. Then you can move on.
  • LBelle
    LBelle Member Posts: 42
    #8
    one day at a time said:

    I just had a total
    I just had a total thyroidectomy about 4 weeks ago due to papillary thyroid carcinoma. What I have heard from so many people is that this is the best cancer to have and it is very slow growing. I know of a young woman who found out while she was pregnant and had to wait to have the surgery until after she delivered her child. But that still doesn't mean you should have to wait that long. Even though they say this is the "best" cancer to have, the word cancer just does something to you. And waiting is one of the hardest parts. I hope you can get this done with soon. Then you can move on.

    THanks One Day!
    Yes my husband and I will talk to Endo/ENT surgeon tomorrow to see if they can squeeze me in the Oct/early Nov surgery. If not, then I'll have to go back to the local surgeon and ask my physican to refer me to a local endo.
  • rstinson
    rstinson Member Posts: 2
    #9
    biopsy not always right
    hello...i had multiple tumore(nodules)on my thyroid..and had them biopsied and the byopsy came back negative...but still to be on the safe side my doc wanted to send mt to a sugeon because my thyroid with the nodules on it was so big and causing swallowin problems for me...so i ended up havein to have my whole thyriod removed april 7 09 and april29th 09 i was diagnosed with pappulary cancer..so no honey they are not always right..it is ur body and ur life u make sure u know and search for answer dont lean on everythin the doc says...i am 33 years old...i have went thru 1 radiation treatment and gotta go back in nov of this year to go thru a week long series of injections to see if the radiation killed the cancer..i am b;essed to have a great cancer doc...i wish u all the luck...may god bless ur life and ur health!!feel free to write me anytime....email rstinson42120@yahoo.com
  • rstinson
    rstinson Member Posts: 2
    #10
    mainstreet39154 said:

    Welcome to the strange world
    Welcome to the strange world of Thyroid Cancer! I think back on when I was first told "cancer" and that was a crazy day for me. It took a couple of days for me to actually say it. So fast forward 6 months and I say it every day. But for you, it sounds like you are at step one. Take it slowly. If your bioposy was inconclusive, you won't really know until pathology from surgery. So don't borrow trouble, just try to research as much as you can, ask questions, don't scare yourself with all of the crazy information out there and try to take it one day at a time until all of the pieces fall together for you. My TT was in April this year and the recovery was really not bad at all. You have alot of steps ahead of you so remember one at a time... Good luck to you.

    very good advice..i had my
    very good advice..i had my thyriod removal in april as well...
  • philliesphan101
    philliesphan101 Member Posts: 3
    #11
    LBelle said:

    THanks One Day!
    Yes my husband and I will talk to Endo/ENT surgeon tomorrow to see if they can squeeze me in the Oct/early Nov surgery. If not, then I'll have to go back to the local surgeon and ask my physican to refer me to a local endo.

    New Also
    Hi

    My story is similar to yours. I had a needle biopsy of a 2.7 cm mass in late May, the results came back normal. My endo and family doctor encouraged me to have it removed. I am a 45 year old male, and never had any type of surgery since my tonsils at 3, so I was apprehensive. (Plus I am REALLY a neurotic hypochondriac chicken, just to get that out of the way!)

    I had a total thyroidectomey on September 23, and they found a papillary micro carcinoma, not in the 2.7 cm nodule that they biopsied, but in a 4 mm nodule that I also had. I freaked when I heard the news, but my surgeon feels that the surgery was the cure and I will not need RAI. I have a follow up with my endo on the 29th so I will see what he also reccomends.

    I know how stressful the waiting can be and wish that I had done mine sooner, but my surgeon did not feel that the wait impacted anything, especially since I thought that I did not have cancer.

    I am in Scranton PA, and we are blessed to have one of the best thyroid surgeons in the area locally. I agree 100% with your decision to have a total thyroidectomy. They also took a lymph node out of me that came back ok.

    The surgery was not that bad. My surgeon gave me a patch to put behind my ear the night before and I had zero nausea after the surgery. In fact I ate a little 2 1/2 hours out of the OR. I stayed the night in the hospital and managed the pain with vicodin about every four hours. The other secret was lemon Italian ice. My throat was very sore, from the surgery and the breathing tube, and one of the nurses brought me some and it was amazing how it helped.

    I hope some os this helps!!

    John
  • LBelle
    LBelle Member Posts: 42
    #12
    philliesphan101 said:

    New Also
    Hi

    My story is similar to yours. I had a needle biopsy of a 2.7 cm mass in late May, the results came back normal. My endo and family doctor encouraged me to have it removed. I am a 45 year old male, and never had any type of surgery since my tonsils at 3, so I was apprehensive. (Plus I am REALLY a neurotic hypochondriac chicken, just to get that out of the way!)

    I had a total thyroidectomey on September 23, and they found a papillary micro carcinoma, not in the 2.7 cm nodule that they biopsied, but in a 4 mm nodule that I also had. I freaked when I heard the news, but my surgeon feels that the surgery was the cure and I will not need RAI. I have a follow up with my endo on the 29th so I will see what he also reccomends.

    I know how stressful the waiting can be and wish that I had done mine sooner, but my surgeon did not feel that the wait impacted anything, especially since I thought that I did not have cancer.

    I am in Scranton PA, and we are blessed to have one of the best thyroid surgeons in the area locally. I agree 100% with your decision to have a total thyroidectomy. They also took a lymph node out of me that came back ok.

    The surgery was not that bad. My surgeon gave me a patch to put behind my ear the night before and I had zero nausea after the surgery. In fact I ate a little 2 1/2 hours out of the OR. I stayed the night in the hospital and managed the pain with vicodin about every four hours. The other secret was lemon Italian ice. My throat was very sore, from the surgery and the breathing tube, and one of the nurses brought me some and it was amazing how it helped.

    I hope some os this helps!!

    John

    Thanks Phillies!
    Thanks for sharing your expierence and I'm glad that you've made it just great!
  • LBelle
    LBelle Member Posts: 42
    #13
    rstinson said:

    biopsy not always right
    hello...i had multiple tumore(nodules)on my thyroid..and had them biopsied and the byopsy came back negative...but still to be on the safe side my doc wanted to send mt to a sugeon because my thyroid with the nodules on it was so big and causing swallowin problems for me...so i ended up havein to have my whole thyriod removed april 7 09 and april29th 09 i was diagnosed with pappulary cancer..so no honey they are not always right..it is ur body and ur life u make sure u know and search for answer dont lean on everythin the doc says...i am 33 years old...i have went thru 1 radiation treatment and gotta go back in nov of this year to go thru a week long series of injections to see if the radiation killed the cancer..i am b;essed to have a great cancer doc...i wish u all the luck...may god bless ur life and ur health!!feel free to write me anytime....email rstinson42120@yahoo.com

    Thanks Rstinson
    I wish you the best too. I hope you'll make it thru the radation just fine.
  • LBelle
    LBelle Member Posts: 42
    #14
    Latest News - Oct 10
    Had an extensive sonogram (cervical neck or whatever it's called) last Wednesday (Oct 7) at Johns Hopkins. I sneaked the look on the sonogram monitor and saw the very dark "squished" thing on my collarbone and yes I totally freaked out and fainted. The radiologist told me that it's not a mass and I must RELAX... Today my ENT doctor talked to my husband and said that I have unusually small thyroid, the one on my collarbone is a lymph node. She said that an unusual shape of lymph node could be contributed by colds or other things. Dr and the team from JHop's Kimmel Cancer Center will overlook the slide this Tuesday and will let my husband and me know afterward since I refused to have second biopsy test. The Endo said that the second reading will come up the same anyway and I don't see any point to have another biopsy. They will let me know about the surgery date next week and hopefully I will have it as soon as possible to GET OVER WITH IT.


    Thanks ya'll for wonderful supports. :-)

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