Infant Radiation for Enlarged Thymus Gland 1940's & 1950

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RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by JUDIANNE on Thu May 30, 2013 09:53 PM

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WOULD IT BE POSSIBLE TO SHARE WITH ALL OF US THE FINDINGS OF HIS STUDY?

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by jkliman on Fri May 31, 2013 01:53 AM

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I will see what I can put together...I am in the midst of teaching summer semester,so am busy...but will get out my box of info. I actually had wondered about setting up,a yahoo group so that I could just upload files.

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by JUDIANNE on Fri May 31, 2013 04:49 AM

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NOT EVERYONE HAS YAHOO.. IT WOULD BE MUCH EASIER TO D/L INTO ADOBE AS MOST COMPUTERS COME WITH THAT PROGRAM AND ITS MUCH EASIER TO HANDLE

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by annkennon on Mon Jun 10, 2013 03:17 PM

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FYI for everyone who has had thyroid cancer.

Follow up, at least for me, has included full body scans every few years.  These  are uncomfortable and inconvienent because you must come off synthroid for weeks, so that any remaining thyroid cancer cells, even a metastized cancer will soak up the radioactive iodine. My main concern has been the exposure to even more radiation!  Several years ago, I said "enough",  that I will  be responsible for the consequences, but no more radiation. I just returned from a check up at Emory in Atlanta with my endocrinologist.  He said that thinking is changing and now an ultrasound of the neck is being used more for checking lymph glands and neck area for a recurrence. No radiation at all!  I don't know if this would be the preferred recommendation for a recent diagnosis of thyroid cancer but I am about 15 years out and this sounds good to me.

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by JUDIANNE on Mon Jun 10, 2013 04:25 PM

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That is all i have ever had is the ultra sound, other than years ago they did a nuclear throid scan that was uncomfortable.. But not bad. The ultra sounds found the tumors i had that determined i needed to have my thyroid removed last year.

 

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by KauaiNancy on Mon Jun 10, 2013 08:47 PM

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Does anyone know of a Registry online for this? If not, it would be very interesting to see how many of us there currently are who are aware of having our thymus radiated as infants. I'm not sure how to go about creating an official Registry but in the interim, let me know if you would be comfortable with joining an online email list where we could post informative info. I just met another doctor who was aware of this study before I brought it up. That's only 2 docs in fifteen years of treatment for 4 different primary cancers, lung disease and heart failure. Finally they understand the devastation of radiation shown on my chest X-rays. While it was a terrible medical misjudgment in the 40's I must credit all the docs who have managed to keep me up and about since. I would be happy to set up a form in a PDF that we could use to enter our basic info as to where we were radiated, when, etc. Once we see how many people respond I would be willing to seek out and talk to the appropriate people regarding a formal registry. (I am on one for Bronchiectasis) If you're interested please email me at nancy100@nancygrantham.com. Aloha, Nancy

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by KauaiNancy on Mon Jun 10, 2013 09:26 PM

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On May 31, 2013 1:53 AM jkliman wrote:

I will see what I can put together...I am in the midst of teaching summer semester,so am busy...but will get out my box of info. I actually had wondered about setting up,a yahoo group so that I could just upload files.
Hi again, I had missed this when I posted my message earlier today. I don't want to complicate things by having two sites so please let me know if or how we could work together or if I'm overstepping on your project. My intent is to set up a site where we can post good, empirically scientific reports on the study as our main goal. I was given a print-out from Stanford that I had seen earlier from PubMed. Wonder how many other case studies are out there to be shared. Cancer compass is a good introductory site but we can't cut and paste documents into it to share. Thx, Nancy

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by jkliman on Tue Jun 11, 2013 03:29 AM

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On Jun 10, 2013 8:47 PM KauaiNancy wrote:

Does anyone know of a Registry online for this? If not, it would be very interesting to see how many of us there currently are who are aware of having our thymus radiated as infants. I'm not sure how to go about creating an official Registry but in the interim, let me know if you would be comfortable with joining an online email list where we could post informative info. I just met another doctor who was aware of this study before I brought it up. That's only 2 docs in fifteen years of treatment for 4 different primary cancers, lung disease and heart failure. Finally they understand the devastation of radiation shown on my chest X-rays. While it was a terrible medical misjudgment in the 40's I must credit all the docs who have managed to keep me up and about since. I would be happy to set up a form in a PDF that we could use to enter our basic info as to where we were radiated, when, etc. Once we see how many people respond I would be willing to seek out and talk to the appropriate people regarding a formal registry. (I am on one for Bronchiectasis) If you're interested please email me at nancy100@nancygrantham.com. Aloha, Nancy
I don't know of any online registry. I am just finishing up my teaching schedule next week so may have some time to breathe. The University of Rochester conducted a large scale follow up study of thousands of I divi duals that were radiated and siblings who were not My brother and I were followed for over 30 years. (He was not radiated, I was). I will try to make contact with someone from the U of R to see if they ever put together a database. In the meantime Nancy if you wanted to put together an email list, I could share articles that I,have. My info is Joyce Kliman Joyceklima@aol.com

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by annkennon on Sat Jun 15, 2013 05:09 PM

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The full body scan is not pleasant.  You have to leave off the synthroid for at least a month or longer until you reach a point of severe hypothyroidism.  Since I have no thyroid and it controls everything, I feel terrible.  The doctor told me to not even write a check during this period. Mental fog.  I swell up, can't think of words I need, shuffle when I walk, gain weight, slurred speech, severe fatigue, and can't go to work. I mentioned that I felt half dead, the dr. said "well,if you went without  synthroid much longer, you would die".  They give me synthroid as soon as I get off the table and I begin feeling better in a few days. Anyway, you can see why it is good news to me that they have decided to do an ultrasound, which I have never had on my neck area. But the worst aspect of the body scan is a huge amount of radiation exposure, which we of course need to limit. 

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by lvarhola on Fri Jul 05, 2013 07:18 PM

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On Jun 10, 2013 8:47 PM KauaiNancy wrote:

Does anyone know of a Registry online for this? If not, it would be very interesting to see how many of us there currently are who are aware of having our thymus radiated as infants. I'm not sure how to go about creating an official Registry but in the interim, let me know if you would be comfortable with joining an online email list where we could post informative info. I just met another doctor who was aware of this study before I brought it up. That's only 2 docs in fifteen years of treatment for 4 different primary cancers, lung disease and heart failure. Finally they understand the devastation of radiation shown on my chest X-rays. While it was a terrible medical misjudgment in the 40's I must credit all the docs who have managed to keep me up and about since. I would be happy to set up a form in a PDF that we could use to enter our basic info as to where we were radiated, when, etc. Once we see how many people respond I would be willing to seek out and talk to the appropriate people regarding a formal registry. (I am on one for Bronchiectasis) If you're interested please email me at nancy100@nancygrantham.com. Aloha, Nancy

I have been looking for information about the thymus gland radiation treatments done in the 1940's and 1950's and found this site. I am a thyroid survivor and a breast cancer survivor. I was radiated in 1949 as a 2 1/2 week old baby. I have had many health problems since 1981 whendiagnosed with thyroid cancer. I am very interested in a Official Registry. I have worked in the medical field for over 32 years and I am appauled by the lack of concern for those of us who have been radiated as infants. I did not realize until I found this site that babies and children all over this country were treated with radiation for the thymus gland. The scary part is that my parents did not tell me about the radiation treatments, but that my aunt told me on a visit from California in 1980. when I ask my mother she siad she had forgotten about it, but that I did have the treatment because they thought I couldn't breath right. My dad was so upset about my thyroid cancer that I never told him or my mother my breast cancer was caused from the radiation. I have two sisters and two brothers who never had any radiation or cancer of the thyroid or breast. I want to learn as much as I can about all this so we can help other people like us.

 

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