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    Old 10-22-2004, 06:39 PM   #1
    hotncold
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    Turns out I have cancer after all...

    I know I can vent here so here it is. I had 1/2 my thyroid out because I had a large nodule with follicular cells. I did research and found out that follicular cancer is tough to diagnose. So,when I had the half out, my husband, a doctor, sent my biopsy to second, better lab. The local hospital where I had the surgery told me that the tumor was benign. However, the second lab has now said that I have "minimally invasive follicular cancer." The lab suggested no further treatment but my surgeon wants the second lobe out and has already scheduled surgery!

    Now I have a BIG decision to make and I am not sure...the first surgery was not fun. What to do? HELP!!!!!

     
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    Old 10-22-2004, 08:30 PM   #2
    midwest1
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    Re: Turns out I have cancer after all...

    I'm sorry for your cancer diagnosis. It must be a tough time for you right now, scary and confusing.... cyberhugs to you.
    Even though thyroid cancer is one of the most curable, and even though I detest the thought of any kind of surgery, no matter what kind ... if it were me, I'd want the darn thing gone ASAP.
    That doesn't mean I'd let the surgeon run the entire show, though. I wouldn't like him doing things without my ok. Surely, your husband must have an opinion that will help you decide?

     
    Old 10-22-2004, 11:02 PM   #3
    sheritap
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    Re: Turns out I have cancer after all...

    I am so sorry to hear that. I will put you in my prayer box tonight. I have had to under go 3 surgerys to remove the Big Nasty "C". I am a true beleiver that if it doesnt belong there GET IT OUT. Since the last abdominal surgery where they found some hidden cells attached to my intestinal track I have never been able to get into the frame of mind that we should treat it first and hope for the best.Had I gone that route, they would have not known about the hidden cells and that would have been much much worse. But what ever you decide we sall be sending pixie dust wishes your way.(pixie dust is magic ya know)

     
    Old 10-23-2004, 12:54 AM   #4
    hotncold
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    Question for SHERITAP

    Can I ask what type of "C" you had? just curious. I would understand if you don't want to respond. I have decided to see a specialist...the surgeon I am dealing with is small town. As I am hypo now anyway, I wish he would have removed the whole thing to begin with.... As I understand it the cancer I have is controversial...some pathologists would not even classify it as cancer and as I said the first lab said it was BENIGN. I almost wish I hadn't asked for that second lab opinion.... I definitately need some expert help as the literature is all over the place regarding the necessity of a second operation. Some Dr.s seem to think hormone supression is enough...However I am only 35 and have a four year old so I don't want to take an unnecessary risk... I hate this. Thanks for the prayers....

     
    Old 10-23-2004, 05:53 AM   #5
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    Re: Turns out I have cancer after all...

    I'm really sorry to hear your news {{{{hugs}}}}

    If it was me I would have the second lobe removed
    ( I had half mine removed 5 months ago so i understand it's not fun )
    I know it's a really bad time for you now , but hang on in there
    was keep strong ...

    Sara xx
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    Old 10-23-2004, 03:16 PM   #6
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    Re: Turns out I have cancer after all...

    Quote:
    Originally Posted by hotncold
    I know I can vent here so here it is. I had 1/2 my thyroid out because I had a large nodule with follicular cells. I did research and found out that follicular cancer is tough to diagnose. So,when I had the half out, my husband, a doctor, sent my biopsy to second, better lab. The local hospital where I had the surgery told me that the tumor was benign. However, the second lab has now said that I have "minimally invasive follicular cancer." The lab suggested no further treatment but my surgeon wants the second lobe out and has already scheduled surgery!

    Now I have a BIG decision to make and I am not sure...the first surgery was not fun. What to do? HELP!!!!!
    I'm sorry you're having such a hard time.Since follicular is a more aggressive
    type I would have the total thyroidectomy just to be sure that it won't
    recurr.It's a good thing your husband decided on a second opinion.I know
    you hate to go through that again but it will be worth it for peace of
    mind.HUGS and good luck to you.

     
    Old 10-23-2004, 07:45 PM   #7
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    Re: Turns out I have cancer after all...

    Hi,
    I was dx'd with minimally invasive follicular cancer in July 03. I had a hard time getting a final diagnosis, as well. My FNA was "suspicious" so they went ahead with surgery to remove my left lobe. My surgeon ended up sending the specimen off to Mayo's before they knew it was definately malignant. Then, I was back in the operating room two weeks later to have the rest of my thyroid removed. I wasn't really given another option. I also followed up with 2 radioactive iodine treatments to get rid of residual tissue they were unable to get with the surgeries.
    Needless to say, it was no fun having to go through the surgery all over again...especially when I was still recovering from the first one. They didn't find any evidence of cancer in my right lobe, but I'm glad I went through it...for my own piece of mind.

    Good luck. I'll keep you in my prayers.

    Last edited by hilery79; 10-23-2004 at 07:46 PM.

     
    Old 10-24-2004, 07:27 AM   #8
    LynnHan
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    Re: Turns out I have cancer after all...

    hotncold....I don't have ANY advise I can offer you.....I just wanted to offer my support. Hopefully it helps in some way. I'm sure it's very stressful for you.

    Lynn

     
    Old 10-24-2004, 01:01 PM   #9
    hotncold
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    Re: Turns out I have cancer after all...

    Thank you all. I have been researching like crazy and will get a second opinion. Looks like I should do a follow up procedure to reduce incidences of recurrence. However, i read a study which showed that they can do the completion thyroidectomy with ablation by radioactove iodine. Since it seems like you have to do radioactove iodine after a second surgery anyway, this sounds pretty good to me. I am going to ask about it...

    By the way, I am hypo too which makes doing this research all the more challenging !

     
    Old 10-24-2004, 03:09 PM   #10
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    Re: Turns out I have cancer after all...

    I'd sure get another opinion, after finding a support group and getting their list of doctors to choose from, info about their experience. Are you in or near a fairly large city? Call some hospitals about support groups?

    You sound so much like me, with, "why didn't he remove it in the first place?" I get scared off when they get in too much of a rush too, don't want anyone taking over my life or any of my parts.

    Cyber hugs from me too. Keep us posted.

    Last edited by Eagle; 10-24-2004 at 03:13 PM.

     
    Old 10-24-2004, 07:16 PM   #11
    hotncold
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    Re: Turns out I have cancer after all...

    Eagle,

    Hae you gone through a second surgery? I live outside of Seattle and am part of the military system. I am getting a second opinion from the National Naval Medical Center in Bethesda (Where the Pres. gets his care...) I am very fortunate to have "free" medical care (although my husband gets deployed and gives up a lot so to me we pay in other ways...) and am also fortunate that my husband can get me the tests and meds I need without delay.

    I will let all you wonderful folks know what I find out. I wish good health to all!

    THANK YOU.

     
    Old 12-07-2004, 08:46 AM   #12
    Sherriof WV
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    Re: Turns out I have cancer after all...

    So sorry to hear this and my prayers and giant hugs go out to you ! Keep a positive mind and you will make the right decision for YOU. Have your support team around you and don't take long to may any decision. Life is important, a happy and healthy one, is what we all deserve. Keep us posted. Remember.....We all will be with you as you go through this ! Hugs. Sherri

     
    Old 12-07-2004, 10:07 AM   #13
    Its Megan
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    Re: Turns out I have cancer after all...

    Im sorry to hear about your diagnosis Everything will be okay! And you can always come here to vent to the rest of the crazies here on this board

     
    Old 12-07-2004, 03:52 PM   #14
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    Re: Turns out I have cancer after all...

    I've not been keeping up with the boards recently so I'm a bit behind in this. I just wanted to say my thoughts and prayers are with you. Whatever course you decide to take, I wish you the best and a speedy recovery.
    Barb
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    Old 12-10-2004, 07:57 PM   #15
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    Re: Turns out I have cancer after all...

    I've been away for a few days too. I just had (11/18) left lobectomy for a follicular lesion with "atypical" cells. Although the risk of cancer was low, I decided to go ahead & have the surgery. The deal was that they would take out the left lobe & do a frozen section & if it looked benign they would stop. If it looked like cancer or was suspicious, they would continue & remove the right side. (I have cysts & complex nodules on the right, but they biopsied the complex one & it was benign & I'll follow with ultrasound.) I believe that the reasoning is as follows: Lobectomy is less surgery hence less risky from a general standpoint than total thyroidectomy; it leaves you with some thyroid & maybe you don't need to replace thyroid hormone; it poses no risk to parathyroids & recurrent laryngeal nerve on the other side. Of course, it's all playing the odds: if the other side does change, or if the frozen section path opinion proves to be wrong when they look at the whole thing & final pathology shows cancer, then you gotta have a second operation. Sounds like in your case they were only suspicious of the one nodule so only did one side in case it proved to be benign. Also you said "local hospital"--I went to thyroid specialist @ big medical school hospital. Actually had biopsy at nearly local hospital because pathologist at local hospital isn't comfortable reading thyroid needle biopsy results. Nearby hospital does biopsies, & 2 pathologists more or less concurred that results were "atypical". Actually, the slides were reviewed by the pathologist at the hospital where I had surgery, & apparently those guys disagreed that I had abnormal Hurthle cells--well, anyway. Bottom line: If I were you I'd go for it, have the thing out. But get a surgeon who does this all the time, to reduce risk of damage to parathyroids & nerves. Very small risks in competent experienced hands. Also, then they can look at the rest of you to look for cancer cells with radioactive iodine--can't do that unless thyroid is all gone. I'm sorry you had a hard time w/1st surgery, I don't suppose it helps to tell you that I had a pretty easy time of it. Maybe your second surgery won't be as tough. And, get a second & third & fourth opinion!! Also, I got 4 opinions--the general endocrinologists told me the odds were low & they wouldn't have surgery, they'd "follow" with ultrasound; but the thyroid specialists were more aggressive--they are the ones who see the exceptional cases & they are less likely to dither & mess around & try to find alternatives to surgery. Good luck! I'll be watching the board to see how you do.

     
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