Infant Radiation for Enlarged Thymus Gland 1940's & 1950

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

by lsecrist0920 on Sun Jul 20, 2014 06:07 PM

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Hi Mary.

Your story sounds like everyone elses.  I had a cancerous muti-nodular thyroid. Removed in 1996.  So far that is all that has happened to me.  I was told that the radiation was extreme in the 40-50's because it was so new.

I wish you the best,

Lorraine

Ohio Valley

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

by MaryELO on Sun Jul 20, 2014 06:12 PM

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Hi Lorraine:

Glad to meet someone in the same boat, more or less, with the ionizing radiation. 

Did you know about the additional danger of blood leukemias, breast and skin cancers?

Sorry to hear that you had cancerous multi-nodules in your thyroid.  How are you doing? 

Mary

 

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

by lsecrist0920 on Sun Jul 20, 2014 06:25 PM

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Mary, 

I am doing good. Also very tired.. Do you feel tired?  If you read the other posts, the stories are horrible. Leukemias, burns on heart,skin. breast,head cancers.

I read you are still going through treatment.  What is that like?

Lorraine

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

by MaryELO on Sun Jul 20, 2014 10:01 PM

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Hi Lorraine:  Yes, I get tired a lot, I think it has to do with low vitamen D and also the lowered immune system.    I feel lucky compared to some of the other people that have posted.

As far as treatment goes, the breast cancer started 2 1/2 years ago.  I had a lot of mammograms during that time to watch the other breast, I think 7 in 2 years.  Apparently, the accumulation of the ionizing tests was more then my body could take.  No one told me until AFTER that I should have minimulized any ionizing tests (cat scans, excessive mammograms, x-rays, pet scans, etc.)  It is too late now.  I got what looked like a pink rash on my chest (where left breast had been) in addition to a round area about the size of a quarter above the right nipple (from a mammogram instrucment) and also about 1/3 of left side of breast was light pink.  They did a biopsy and it came back Actinic Keratosis, which is normally caused by the sun.  That area was never exposed to the sun and eventually changed to Radiation Keratosis.   I am now in the nightmare of trying to do something about it. 

I call it a nightmare because the dermatology specialist I saw said it is not cureable, only treatable.  I will have to have treatments 2-3 times per year for the rest of my life.  Also, she said there is no way to know how deep it has gone.  The Radiation Keratosis is more aggressive then Actinic Keratosis and can progress into Basel, Squamous or Melanoma. 

There is a big debate about the treament because of my impaired immune system anyway (breats cancer) and whether I should have the chemotherapy cream which is normally given for actinic keratosis.  They just tried a photodynamic therapy treatment to see if it would work.  The area in question had grown in a little over a year to about 4 inches by 2 1/2" on the left.  After about 3 or 4 days I knew something was wrong when an area about 2" all around was red.  Then it turned into little pimples with white caps that itched terribly.  I later found out it was staph.  Went to my PCP and he said I had staph and a yeast infection.  I am now being treated for that in addition to the damage from the treatement.  I am getting better but don't think they will do this treatment again because of what happened.  Time will tell.  I see my PCP tomorrow.   I will keep you posted.

Mary

 

 

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

by lsecrist0920 on Wed Jul 23, 2014 04:16 AM

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Hi Mary,

Thank you for sharing your story. Please talk to me anytime you like.  When I hear your story, I think what an amazing person you are.  Are you fair skin?  My father was Italian and I have very dark Italian skin. When you were talking about how pink your skin was and the white caps, it make me think. Also, you mentioned it was more than your body could take. I wonder if darker skin would protect the body better than fairer skin.  Being in the sun never bothered me. Just a thought.

All my life, I never felt good.  I had Mono,Pnemonia but you don' think of it being related to the radiation. Now I know it was. I have always felt hypo because of the thyroid. 

Did you know when all this started that is was related to the radiation?

An attorney's assistant called me today and took down information about the radiation.  I had emailed him a week ago and he finally called.  I don't think anything will happen. I don't want to do it as an individual but as a group. Way too many people have suffered and I would not leave anyone out of the loop.  This is too important.

Thank you for taking the time to tell me all that has happened to you.

Good Luck,

Lorraine

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

by JUDIANNE on Wed Jul 23, 2014 03:08 PM

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LORRAINE,

PLEASE READ ALL OF THE POSTS ON HERE. I RECENTLY CONTACTED 2 MEDICAL CLASS ACTION SUIT LAWYERS. THEY BOTH RESPONDED THAT OUR ISSUES WITH THIS ARE WAY BEYOND THE STATUTE OF LIMITAIONS AND THEREFORE IS BASICALLY A NON-ISSUE LEGALLY. 

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

by MaryELO on Fri Jul 25, 2014 03:17 PM

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How does a person find a specialist that know a lot about the radiation damage?  I sure am having a hard time.

Does anyone know a place in the US (other then Rochester, NY) that is knowledgable.

Mary

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

by MaryELO on Fri Jul 25, 2014 03:19 PM

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Where is a good place to go to get help for radiation issues that knows about our "common" history with the infant radiation?    Mary

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

by JUDIANNE on Fri Jul 25, 2014 05:19 PM

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FIND YOURSELF A A GOOD ENDOCRINOLOGIST. HAVE HER ORDER AN ULTRASOUND OF YOUR THYROID GLAND. IF ANYTHING IS FOUND, YOU WOULD BE REFERRED TO AN ENT SURGEON..( EAR, NOSE AND THROAT). MOST ALL OF THEM BY NOW ARE AWARE OF THE RADIATION TREATMENTS BY NOW. 

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

by Grammie1946 on Tue Jul 29, 2014 12:54 AM

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I am new to this group, but I had radiation treatments to my thymus in 1946 when I was a baby because I was having breathing problems.  In 1983, I had my thyroid removed because I had cold spots and they could not tell if they were cancer.  After they operated, they found out it was not cancer.  Last year, I was diagnosed with sclerosing mesenteritis.  Last week I was diagnosed with breast cancer.  My breast cancer surgeon said that the radiation may have caused my cancer.  She is sending me to a radiologist for more information.  I will let you know what I find out.

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