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    Old 01-22-2008, 07:27 PM   #1
    kscb30
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    Papillary Cancer

    Just got the results from my TT pathology, it came back as papillary cancer Stage 1, the doctor said I do not need RAI, anyone else have this? I am under 35 and it was isolated in my thyroid gland. Any experience with this would be great to hear about. Thanks!

     
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    Old 01-22-2008, 09:50 PM   #2
    easydoesit
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    Re: Papillary Cancer

    Hello! My name is Janet and I am easydoesit's wife.
    Has your thyroid been removed? I had papillary cancer 10 years ago at the age of 51. Mine was also isolated in my thyroid. My surgeon removed the side with the tumor on it and we had to wait for results to come back.(Our local labs could not determine if it really was cancer.) Six weeks later I had the other side removed. I had trouble locating an endocrinologist that was on my insurance plan. I did find one in Ft Worth. TX. (about 30miles from my home.)I really didn't like him but he took control and scheduled me for a body scan and then the RAI treatment. After that my doctor at the cancer center referred me to an endocrinologist at Southwest Medical School in Dallas. I went once a year for body scans. After 5 years, I only had to have a blood test done. I was cancer free until 2006 when I had kidney cancer. (I am cancer free again!)

    I would urge you to ask for the RAI treatment. You want to make sure all those thyroid cancer cells are killed. I had my RAI done at a Fort Worth hospital. I was in isolation for about 24 hours. It was an experience! I am sure they do things differently now.

     
    Old 01-23-2008, 05:25 AM   #3
    ChristineVA
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    Re: Papillary Cancer

    I was diagnosed with thyroid cancer back in 1995 (I was 31 at the time). Mine was also localized to the thyroid gland (my tumor was just under 1 cm.).

    The "gold standard" of treatment for thyroid cancer for all nodules (unless they are microscopic) is total thyroidectomy followed by RAI. I know your doctor is telling you you don't need it, but honestly, I question his experience handling this disease if he is saying that.

    There are doctors that are thyroid cancer specialists and then there is everyone else. Make sure you are being treatmed by someone who is "up" on the disease and is following standard protocols. Many years ago, they didn't always use RAI but they are almost always using it these days.

     
    Old 01-23-2008, 06:50 AM   #4
    kscb30
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    Re: Papillary Cancer

    My Dr. is locally well established endocrinologist, he was not the surgeon who I will meet with again in three weeks. I think I will seek a second opinion is they say no RAI - I still don't want the RAI if I don't need it - from what I have read it has some associated risks too.

     
    Old 01-23-2008, 07:25 AM   #5
    fancee_face71
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    Re: Papillary Cancer

    I am 36, had my TT Aug 6th 2007. I had Papillary Carcioma that was "isolated in my thyroid gland".
    I did receive RAI and most current body scan shows that there is still cancer on the residual tissue.
    Just because they take your thyroid out doesnt mean the cancer is gone. There is no way to ensure that it is gone without the RAI & scans.
    You have to have the scans to MAKE SURE it hasnt spread.
    How the heck does your well established endocrinologist know without looking?
    I hope your ENT has more experience/knowledge than your Endo. All docs practice differently and it is up to us to ensure that we are receiving optimal care.
    Best Wishes
    ~Fancee~
    __________________
    ~

     
    Old 01-23-2008, 08:35 AM   #6
    ChristineVA
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    Re: Papillary Cancer

    kscb,

    After posting my initial response, I've been sitting here thinking about you and feeling a little bad. So, I'd like to tell you a bit of my story. I remember being, like you, newly diagnosed, very scared, and totally having to rely on my doctors with no one else around to go to for advice.

    When I was diagnosed, it all happened very quickly. Once we knew I had cancer, I was sent of to my city's "best and most well-established" endocrinologist. And he is/was. For diabetes. In fact, he leads our local hospital for endocrinology and he's a very nice guy. I don't live in a small town either. I am in a HUGE suburb outside of Washington, DC. But, thyroid cancer was pretty rare then, as it still is now. Most busy endos may only have 2-3 thyroid cancer patients in their lifetime. They know how to "basically" treat it but they probably don't stay on line and read the updates that come out quite frequently.

    Anway, my endo didn't quite know what to do with me. I had a tumor that was under the threshold for treating with RAI (it was just under 1 cm). He was on the fence as to whether to treat me or not. He finally had to pick up the phone and call the head thyroid guy at Johns Hopkins, who recommended that I be treated with the lower dose of RAI (30 mci). It was low risk and didn't require hospitalization.

    Due to my work schedule and location (which was in DC), I decided to have my RAI treatment closer to my office versus at the hospital in my suburb. My endo did not practice at this hospital but gave me permission to have the treatment there. It was when I showed up there, that I kind of knew I was not being seen by an expert. The radiology staff was floored tha I wasn't getting a higher dose. They had used the lower doses before and had had experiences where the lower dose was not eradicating the thyroid. I was scared and I trusted my doctor so I just stuck my fingers in my ears, closed them all out, and proceeded.

    As you can see where I'm going, my treatment did not eradicate my remaining thyroid tissue (the surgeon always leaves some behind). Without it being fully eradicated, you don't know if you've still got cancerous cells in there nor can you ever follow up well to make sure the thyroid cancer doesn't return (as it can in a decent amount of cases). My endo then kind of panicked and he did order a larger dose. By then though, the remaining tissue had been damaged by the lower dose and was no longer functioning like normal thyroid tissue. The 150 mci treatment didn't work fully either (but it did make some progress).

    At this point, the radiology techs (who I had gotten chummy) with suggested that maybe I see someone who was well-versed in THYROID cancer. They gave me a name of a doctor who they knew saw a lot of thyroid patients because they got his patients. Lo and behold, he wasn't even a "real" endo but an internal medicine doctor with a sub-specialty in endocrinology and specifically thyroid cancer. He had thyroid cancer himself, back in the 1980s, so he took an interest in it. I found out that he had over 100 patients that he managed for thyroid cancer and stayed up on the research.

    This is where you need to be, a place like this. You need to determine who well versed your doctor is with this disease. My gut feeling is that if he is not recommending RAI, he's only had a few patients with this. But he *is* probably a GREAT endocrinologist.

    As I said, I live in the DC area with tons of doctors, but most of us DC thyroid cancer patients stick to the *few* specialists that are located at the Washington Hospital Center. There are a few stray doctors out there (like mine) who are very well-versed in it and follow the Washington Hospital Center's protocol.

    There are other gurus located in Boston and Kentucky and you will often find that, in smaller towns, there will be the one doctor that aligns himself with these experts.

    In the end, I ended up having to have 3 RAI treatments for my one little tumor. I have 100% faith that if I had seen the *right* doctor and had *optimal* treatment at the beginning of the course of treatment, I would have had a very different outcome.

    There are many support resources for thyroid cancer that would back up what I am telling you. I believe this site prohibits me from giving out specific information so I won't do that, but you really need to research this for yourself to ensure you get the best treatment.

    I did not do that back then (no support groups or internet groups then) and I really feel that I paid the price.

     
    Old 01-23-2008, 01:34 PM   #7
    kscb30
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    Re: Papillary Cancer

    Thank you so much for your detailed story, like you said I am new and don't know much about this. I still have to meet with the surgeon who will give his recommendation, that is in three weeks. If he does not recommend it I will be going to Hershey Medical Center which from what I understand has well versed Doctors in this. Usually the endo. does not make the recommendation for the RAI I think the surgeon does so I will wait to see what he says and then take it from there. Thank you again so much for your story!! I would rather be safe now than sorry 10 years from now!

     
    Old 01-23-2008, 02:57 PM   #8
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    Re: Papillary Cancer

    Quote:
    Originally Posted by kscb30 View Post
    Thank you so much for your detailed story, like you said I am new and don't know much about this. I still have to meet with the surgeon who will give his recommendation, that is in three weeks. If he does not recommend it I will be going to Hershey Medical Center which from what I understand has well versed Doctors in this. Usually the endo. does not make the recommendation for the RAI I think the surgeon does so I will wait to see what he says and then take it from there. Thank you again so much for your story!! I would rather be safe now than sorry 10 years from now!
    I hope it helps. I just felt bad because we were all kind of being "down" on your endo. As a new thyroid cancer patient, I know that it is very scary and it is HARD to question your doctor and start running around and getting second opinions and so on.

    Where I live, the surgeon just removes the thyroid and refers you back to your endo. The surgeons here do not do anything else but track your surgery, your scar, and your healing process and then they are done with you. Follow up is always done by the endocrinologist. But, I do know that in different parts of the county, there are different protocols. For instance, where I live head/neck surgeons do thyroid surguries. In other parts of the U.S., an ENT is in charge of removing thyroids. So, who knows--maybe the surgeon there will be in charge of the treatment.

    I would be very interested to know the size of your nodule.

     
    Old 01-23-2008, 03:37 PM   #9
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    Re: Papillary Cancer

    Good luck with your decision. And I think you need to see another endo. for a second opinion, just to make sure you are making an educated decision.

    How large was your nodule? If it was over 1cm, there aren't many doctors who wouldn't recommend RAI. The fact that you had more than one, might have meant it was spreading across the thyroid already, and if lymph nodes and blood vessels weren't biopsied, you don't really know what's there.

    In my case, my surgeon is on the board of the thyroid cancer organization and firmly believes in RAI, not just in my case (where it spread beyond the thyroid), and not just over 1cm, but even my roomate in the hospital, who's endo. said hers was so small, wrote a letter to her endo. explaining the studies and why he believed she must have it.

    She had little babies, and even though her surgery was in Feb, she waited until the summer when she had more childcare help to have it. But she did have it.

    I don't think it's an emergency or anything, so take your time to decide and get professional opinions about it. there is no right or wrong in thyroid cancer, because people tend to do well.

    Last edited by Reece; 01-23-2008 at 03:40 PM.

     
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