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    Old 03-29-2009, 08:05 AM   #1
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    Oleander53 HB UserOleander53 HB UserOleander53 HB User
    Thyroid Genetic Testing

    When I go to MD Anderson this week I have an option of having genetic testing for Thyroid cancer. My Mother had thyroid cancer age 48 and had a TT done. Her records are unavailable now so we have never been able to know the type of cancer she had. She had the surgery 44 years ago. Every one who knew about it is passed away now. ( I am leaving my children detailed medical history with Path reports).

    When I am at MD this week they have suggested I might want to have this done. It is offered there for Thyroid and other cancers. Any thoughts or ideas about it?

    Thanks, Oleander

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    Old 03-29-2009, 09:15 AM   #2
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    AlexaIn2006 HB UserAlexaIn2006 HB UserAlexaIn2006 HB User
    Re: Thyroid Genetic Testing

    Why not? Sounds like the information may be useful.

    Old 03-29-2009, 10:13 AM   #3
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    Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
    Re: Thyroid Genetic Testing

    I have been debating gene testing for breast cancer for years since my mom has it. If you do have the gene, the only preventive is to have your ovaries removed and take tamoxofin, and sometimes have breasts removed, and it is more effective to have this done before your 40's for it to decrease risk. Otherwise you just have to be dilligent about mammos etc., which I do anyway because my mom has it and is high risk. I've decided no for now.

    Several women I know who have breast cancer didn't have either of the genes---so in my opinion, the science doesn't help much, and could only make me crazy.

    Thus I'm dilligent anyway. I think genetic testing is in it's infancy. The costs, are in the 3000 and up range, and even if you don't have the "bad gene" you can still get it, so how much does this help? I don't know anyone in my family who had thyroid cancer, and it certainly wasn't the cause of anyone's death, and I got it anyway. Gene or no gene, I had it, it's thankfully over, it's not like breast which is more of a decision because it can kill me.

    Thyroid cancer, other than medullary which has always had a strong genetic link, is not deadly, so I wouldn't go thru it, but in your case, knowing that my mom had it, would make me dilligent anyway---which it sounds as if you are dilligent about your thyroid if you're on this board.

    So, whatever you do, of course I wish you the best, in a cancer facility they are always doing studies and you might help them with that by having the testing done.

    Last edited by Reece; 03-29-2009 at 10:14 AM.

    Old 03-29-2009, 12:49 PM   #4
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    Oleander53 HB UserOleander53 HB UserOleander53 HB User
    Re: Thyroid Genetic Testing

    Thanks for the responses.

    I have been on the board for almost 3 years now. I have a multinodular goiter. I have 4 dominant nodules. I am always being watched and have put off having my thyroid out. Trying to hang onto it.

    I will talk to the genetic people where and see what they say. They seem to have some testing for cancers of the thyroid...

    I am so beyond worrying now..... first my thyroid scare and now my confirmed vulvar cancer diagnosis.... I would rather know what I need to watched for. I have learned alot and after the fear leaves you you just become more proactive since you have to think clear. I keep running into idiot Doctors. So you have to educated on your own disease process.

    I will at least hear what they have to say while I am there. Say a prayer for me.

    Thanks, I will let you know what they tell me........Oleander

    Old 03-29-2009, 04:00 PM   #5
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    Lori123 HB User
    Re: Thyroid Genetic Testing

    Hi Ole,
    Just my 2 cents....Interesting post, because I did go through genetic testing last summer. I was told that there is so much cancer in my family that I would be a good candidate. My dear mother had breast cancer at 39, and then at 59 had pancreatic cancer, and died of pc at 60.{Worst day of my ****** That was 7 years ago. Anyway, BEFORE I had the tc, it was just merely mentioned that I could go through the genetic testing. My sis who is younger and I discussed it a few times and we both said, nah..we don't want to do it. Then I had an odd breast issue, very minor, and my doc sent me to a breast specialist. She recommended genetic testing, the issue I had was nothing, just hormonal, she said. I thought about it and didn't tell anyone, and decided after I spoke with my PCP, who is my ob/gyn, and has been my doc FOREVER, he said, "Knowledge is power." So, I decided to do it, and GUESS WHAT? I was diagnosed with the TC, and thought FORGET it, it was the furthest thing from my mind!! The genetic counseling center called and kindly inquired if I wanted to do it, and I said no way, not now, MAYBE at a later date. Fast forward to this past summer, and I got a call from them, and I decided things have settled down now, and I guess I should go ahead and do it.
    AFTER, I did it, I felt very mixed feelings, apprehensive, sorta wishing I had not done it, mostly... was I able to handle it if it were bad news? I felt like it was too soon, it wasn't even a year out from my I was really nervous.{plus my son just had a head injury and seizure} I couldn't have handled any more bad news!!!!
    I told my husband, that they better not call right before my oldest son's grad party or I will not be able to handle the party, etc.
    Sure enough, he called the day before, and I kinda panicked, until he told me that it was NEGATIVE!! Thank you, Lord. BRACA I, and BRACA II..negative. I did not tell anyone I was doing it, but I happily told everyone after. I think that my aunts, my mom's sisters, were "surprised" it was negative, especially since I had had the TC. They were very happy for me.
    Now, of course, I am glad I did it, but if it were positive, it really would have been too soon, for another blow like that.

    You have been having issues with your thyroid already. You may be able to make a much more informed choice if you know that you carry a gene for tc.{which honestly, I didn't even know they had testing for}. Then you would probably feel like it was time to get it out.
    Most importantly, I tell you my long story, because you need to be able to accept the outcome, which honestly, like I said, was too soon for me. You are already having to deal with your vulvular cancer. {first time that I have read about that......sorry you have to go through that, too.}.

    Although, maybe you are ready to get your thyroid out, I WAS NOT ready to remove my breasts and ovaries at that time. Which, he told me that they would not necessarily do all that anyway....
    Plus, like Reece said, with the breast cancer genetic testing, it doesn't mean you are free and clear, you still have to be proactive and diligent. I was told that I would definitely be having MRI's had it been positive, which is again, being proactive..........
    You have a lot on your plate right now, and I wish you well.
    Long post, but it really caught my attention, because I have been there!!
    God Bless you,

    Old 03-29-2009, 04:57 PM   #6
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    Oleander53 HB UserOleander53 HB UserOleander53 HB User
    Re: Thyroid Genetic Testing


    I soooo appreciate your post. I am going over to MD Anderson for my Vulvar Squamous Cell Cancer on 4/3. Since it is non thyroid I have been posting elsewhere about it. I had to fill out 8 pages of information for MD and the thyroid issue came up ...also they genetic test for melanoma which my father had 6 melanoma's and my brother has had one so they do genetic workup for that also. I was interested in having the melanoma testing when I saw they had made note of the thyroid genetic testing. I doubt our family history of melanoma is genetic, I believe it is enviormental. But I would like to be tested.

    I am also being checked for a Squamous cell antigen which interestingly you can get in your thyroid which I never knew..It is pretty aggressive if SCC gets in your thyroid so I know I do not have I am learning quite a bit about the different cancers.

    My Mother had thyroid cancer type unknown at 48. My father had melanoma, squamous cell and basal cell skin cancer. He also had bladder and liver cancer. Also Bowen's disease which causes skin cancers from elevated arsenic levels. I also have Bowen's.

    I am happy I will get the chance to talk with them about my thyroid issues. I will find out more about the Genetic testing they do on the thyroid.

    They did say that employers and insurance companies are very predjudice after results are found out and they are working to help pass laws to protect people from being turned down due to pre exisiting conditions. They said a new law will be passed before 2009 is over.

    Yes probably if I found I had a genetic link to a thyroid cancer I would probably toss in the towel and let them take it out....just to be on the safe side since I already have had so many problems with nodules and such.

    Once again thanks so much. Sorry about your Mom. I miss my mother everyday...she has been gone 16 years now and it seems like yesterday. Lost my Dad a year ago this month. I have 3 kids now with no grandparent's and their dad is passed away so I want to make sure I stay the healthiest if not for myself but for them. I would hate to leave them with no parents.

    So off I go to find out how to combat all of this. Thanks everyone. Oleander

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