Radiated on purpose as an infant in the 1950's, cancer developed years later

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Comments

  • suggi
    suggi Member Posts: 10 Member
    GaDancer said:

    Thymus radiation

    Both my sister and I received radiation as infants for a "chest rattle", she was born in 1941 and I in 1945.  My sister died at 57 from Type I Diabetes since childhood and Lupus (cause was respiratory failure).  I have had Multiple Sclerosis, Psoriasis, Ocular Rosacea, and Common Variable Immunodeficiency.  I have had non-stop sinus infections since 2005 and now have kidney failure from all the antibiotics.  I now get IVIG infusions once a month.  Both my sister and I had Hashimoto's with nodules.  I lost my son to Lymphosarcoma at age 2.

     

    I have been accepted in a study at NIH for hypothyroidism and fungal infections.  It seems that they need to study this large group of people who have problems as adults from radiation treatments as infants.  Those machine emitted massive doses of radiation.

    Thymus radiation

    GaDancer

    Looks like we are all in the same boat without a paddle.  See my post below to Deech for all my problems I am sure stem from 2 separate sets of radiation treatment on the thymus and then later to get rid of scar tissue in the area.

    Please let us know the results of the study at NIH.  Where is NIH??  I am very interested in knowing what they found out.

    I am sorry for all your problems, esp. the kidney failure.  What were they thinking back then?

     

  • suggi
    suggi Member Posts: 10 Member
    kodsgy said:

    I am 57 and was irradiated at

    I am 57 and was irradiated at a few months old for enlarged thymus after my parents brought me in for sinus symptoms (was probably only a milk allergy). I do not and have never had cancer, but I’m interested in ways the radiation could have negatively affected my life. I just joined here after finding this thread and don’t know if it exists somewhere in this forum, but would like to find a survivors support group for child thymus irradiation. Determining which health problems, short of cancer, could be related to the irradiation treatments would be valuable. I could list my health issues here and ask if anyone else has had anything similar, but I’m not sure it would be on topic.

     

    Also irradated just like you

    kodsgy

    Hope you see this message.  See my reply to Deech below for a list of most of my issues.  Actually there are more and am interested in hearing about yours.

    Please reply to this post.

  • kathygori
    kathygori Member Posts: 4 Member
    Deech said:

    Interested in others radiated at birth for enlarged thymus

    Hi, I'm also interested in this subject as I was irradiated as an infant also. Dr. told Mom that it was for SIDS or choking. I'm 65 now and being evaluated for possible breast cancer. How are you recovering? I hope you are doing well. Regards, Deech

    Diagnosed with breast cancer again

    about a week after my last post on Sept 2014 I was diagnosed again with breast cancer in my other breast. I've finished chemo and now am getting Herceptin for the rest of the year until next January. There's not enough being written about this stuff and all of us who were "treated" back in the day

  • Jim123mutual
    Jim123mutual Member Posts: 1 Member
    Thymus radiation

    My mother told me when I was about 28 years old that I was one of ythe babies which had this type of raidation therapy for an enlarge Thumus.  I never knew it before that moment.  I know that I am lucky without any cancer so far.  I do ask my doctor for exam on my throat area on an annual basis to help me.  I do get sore throats alot.  The sore throats feel like more like lumps because it bothers me alot when I try to sleep at night.

  • JConrad1955
    JConrad1955 Member Posts: 1 Member
    Childhood Radiation

    I had radiation treatments as a 6 month old in 1955. Not sure how often, apparently I aspirated milk and it made my breathing very labored. I know I was in two seperate hospitals and it took awhile for them to figure out what was wrong. I have been hypothyroid for about 18 years. Have had 3 cervical disk fusions, 1 surgery for bone spurs in the neck. Suffered with neck issues(muscle spasms) for many years, before I injured my neck at work. I had breast cancer 16 years ago. Also a parathyroid tumor in 2011. Have chronic kidney disease Stage 3 diagnosed a year ago, just had kidney biopsy done. My problem today is the hypothyroid disease, symptoms are no longer being helped by levothyroxine. I have goiters, high blood pressure, depression etc. We should have a study done on all our issues as we age. I am 61 years old

  • DS
    DS Member Posts: 1 Member
    edited April 2017 #47
    Had Radiation as an infant right between the brows: birthmark

    Back in 1946 I was born with a birthmark and I'm not sure how soon it was, but had radiation treatment

    between the brows. I've had quite a few health problems through the years, but only one basal cell carcinoma at age 30.  

    I've struggled with health disorders, but the worst has been anxiety and depression. I was also diagnosed with a problem

    with concentration and memory, but I was able to finish college.   I'd like to talk with others who may have had the 

    same problem. Thanks.

  • Huron
    Huron Member Posts: 1 Member
    Thymic irradiation

    I was irradiated for an enlarged thymus in 1956.  In my 20's I went on thyroid replacement because it was believed that that would help prevent thyroid cancer.  I have had my thyroid removed for suspicious nodules (did 2 inconlusive biopsies) but in the end it was benign and no further treatment was needed.  I have had breast cancer - DCIS - had the cancerous breast removed and then the other one was removed preventatively because they told me it was not "if" i would get cancer in that other breast it was "when".  Now I am waiting to see another specialist for a suspicious lesion on my tongue - I was interested to see that "beadgean" had something on his tongue.  Did they connect that to the irradiation?  When they did this irradiation they didn't use lead blankets or concentrate the radiation beam so I am wondering if I was a crying baby strapped down with my mouth wide open and the tip of my tongue exposed when they did the radiation on my neck.  I have also had tinnutis for over a decade and have lost considerable hearing as a result of the tinnutis and may shortly consider hearing aids.  I hope some of you are still checking this site - are there any other discussion groups?  Did anybody else have issues with their tongue?  Thanks for any insights!

     

  • sheepwrecked
    sheepwrecked Member Posts: 1 Member
    radium treatments as a newborn

    I was born in 1952 with a large stawberry mark over my head and forehead.  Rather than treatment by xrays in a hospital, my mother took me to a private pediatrician who told her he could remove the birthmark painlessly.  According to my father he did this by taping pieces of gray radium metal over the birthmark first thing in the morning for s ix days, covering it with a stocking cap and sending my mother out to window shop with me held to her breast for the rest of the day.  At closing time around 5 PM she returned and he took off the radium until the next time.  

    This was in the old Jenkins Arcade in Pittsburgh, and who knows how many people my mother unwittingly exposed to high dose gamma radiation during those days of window shopping.  The birthmark disappeared.  By the time I was twelve so had my hair in the irradiated area.  This deformity had a lifelong negative consequence on my life in social terms, in spades!  What do you think happens to a girl who grows up  bald?  I also didn't grow;  I only made it to barely 5 feet tall.  Later when I learned enough to research the effects of gamma radiation exposure I found that it interferes with torso growth.  My legs are long for my height but I have no distance between hips and ribs.  

    My mother found a lump in her breast at age 42; she died of breast cancer 6 years later.  We have no history of breast cancer in the family, including post-menopausal.    I enrolled in a breast cancer study in my late thirties, and received state-of-the-art mammography as part of the study.  Because of this, when I developed breast cancer at 39 it was found at a very early stage and successfully treated with bilateral mastectomy.  Which is a good thing because it was right down against my chest wall, and if I had not found it until I could feel it, it would have been too late.  

    At age 60 I was diagnosed with ovarian tumors of an unusual type.  Although they were large, less than 2% of the tumor was cancerous, and so I am still alive at 65.  I don't know when the next problem will occur as I age.  My heart goes out to all of you who have had your health damaged by radiation.  The one thing I learned during all of this is that doctors don't pay attention unless you keep telling them loudly and repeatedly about things that cause problems.  For both your own sake and that of the younger people, keep telling your doctors about the LONGTERM effects of radiation.   Incidentally, my father told me that the pediatrician with the radiium metal kept it in a little wooden box under his desk, that did not look big or heavy enough to be lead-shielded, and that the pediatrician died in his forties of some kind of uncommon genital cancer.  So the doctors need to be aware of the longterm affects of radiation for their own sakes as well as ours.

    Too many doctors never think ahead to the effects in twenty, thirty, forty, or more years, of that CAT scan they want to do on your kid.  Or the effects in five, ten or twenty years to the women with cervical problems that they treat by putting radium pellets in the vagina.  As a retired RN, I've seen how high the incidence of bladder cancer is in these women.  Also, the lifelong difficulties some have with shrinking and hardening of the vaginal and rectal tissues.  Patients need to keep taliking until their doctors hear them, and then maybe we can prevent some of these problems for our children. 

    Be an active participant in your medical care.  Ask questions.  Speak up and be heard!

  • cheryl mcmurray
    cheryl mcmurray Member Posts: 1 Member
    1951 thymus radiation

    I had radiation in 1951 due to enlarged thymus. I have had health problems all my life.  I had a large growth in my throat that blocked my food passage it was removed. I've had tumors on my thyroid.  The thyroid was surgicaly removed.  I have had multiple by passes, including heart,corrotid,subclavian and a renal stint. I have had fusions in both my cervical and lumbar areas. Those areas now have rods and screws. I had a melanoma above my lip.  I also have diabetes and Hypercoalagutive disorder.  My Hemotalogy Oncologist says he feels as though the magority of my health issue stem form the radiation I received as a infant.  Oh i forgot I recently had a stroke.  He was the only doctor who listened when I told him about the treatments.

  • msgjanly
    msgjanly Member Posts: 1
    edited June 2018 #51
    Early 50's Liquid Radiation and "X-Rays"

    I had ear problems. I remember teachers were always sending me home because my glands were always swollen. They thought I had mumps. I did have them, but not that often. Anyway, for many years I have blocked out most of what happened back then. It actually all came crashing in a few years ago. I started remembering some of things I went thru. One of which was being held down by my parents so that the doctor could inject something into my ears. I remember my father joking that the smoke was coming out the other ear. It didn't, though; it came out thru my nose. I blocked it out for many years because I absolutely HATED having this done. I also remember having to lay completely still while I had, what I call x-rays, but it was radiation treatments. When I was 24, I had my second child and I developed numerous moles on my neck, on right side. The doctor at the time just snipped them off like it was nothing to be concerned about (this was in 1973).

    Now, fast forward many years later (I am 68 now), I had to have my cataracts removed in my 40's; I found out I have a hypothroid; always had hearing problems (now I have hearing aids, normal at my age, yes, but still....). I had a really bad cold back in May of this year. It is now July and I still have cough, and now my glands are swollen, mostly on my right side. I finally went to see my regular GP, mainly because I couldn't shake the cough, and she could not find anything clogged up. She prescribed an antibiotic and cough medicine and neither has made a difference. I will complete the pills. If no change, of course I will go back.

    I have not been diagnosed with any cancers, they don't run in our family (I know that is no guarantee). But as always, the stuff I had done back then always comes to the surface now, especially as I get older. When I was tested for my hearing aids, the doctors were dumbfounded when they looked inside my ears. It really does look like a bomb went off in there.

    The thing that I have found frustrating is that I have yet to find a doctor that doesn't look at me like I am crazy when I tell them what happened back then. They don'know anything about it. I actually live in Houston, Texas, home of the world famous medical/cancer center. I just want to find someone to take all this seriously. Something ain't right!

    Thank you for letting me vent on this.

  • DoriDNP
    DoriDNP Member Posts: 1
    Add me to the glowing group

    I had a large hemangioma (strawberry mole) on my mid back over my spine when I was born in 1956. My pediatrician told my Mother they could remove it with "Cobalt Radiation." I had 40 treatments that took it away on the surface. Evidently there are reminents that can be seen on a bone scan I had to have after I developed tumors in my ovaries, thyroid gland, and parotid gland, all of which have been removed, and so far have been weird pathology, but not cancerous so far. I started getting bone deterioration in my bck at 18 years old and have lost about 3 inches of height... 

    Glad to know I am not alone in all this. Really glad...

  • suggi
    suggi Member Posts: 10 Member
    infant rad - thyroid plus anyone with scoliosis, osteoporosis?

    Besides breast cancer, severe Graves disease (needed immediate RAI to destroy thyroid), has anyone gotten severe scoliosis and/or osteoporosis?  I was told the radiation could affect the bones as well .  I also have precancerous cysts on my pancrease but beause of so many other health concerns i can not have Whipple surgery. Someone I know  who was radiated as a small child had 6 miscarriages, pituatary cancer, now brain tumor and severe osteoporis so just wondering....  There are so many of us with so manhy health conditions.

  • wrwoolley1
    wrwoolley1 Member Posts: 36 Member
    2manyrads said:

    Childhood Radiation
    I am currently working on a book about the tragic misuse of radiation on children for benign conditions (including thymus, earache, acne, tonsils, adenoids, birthmark, mumps, fungus, etc.) and would be very interested to hear other’s stories.

    As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. After surgery, radiation and chemo treatments for four cancers (leukemia, thyroid, lymphoma, prostate), three open-heart operations, four years under Hospice care, and twenty-six years after being told I had six months to live, I believe that one of the reasons I am still alive is to tell this story so we can learn to use medical radiation with greater caution. I am firmly convinced that the proper use of radiation saves many more lives than it threatens—I have benefited from diagnostic and interventional radiation, without which I would not have survived the very diseases that excess radiation caused.

    Below is a link to my blog if you wish to learn more about this project and talk to others who have experienced much of what I did.

    On my site there are many links to other blogs and people determined to alert parents to the risks from the increasing amount of radiation children are receiving from CT scans today. According to a recent New England Journal of Medicine report, “there is direct evidence from epidemiologic studies that the organ doses corresponding to a common CT study result in an increased risk of cancer. The evidence is reasonably convincing for adults and very convincing for children.”

    http://childhoodradiation.blogspot.com/

    Thymus irradiated in 1953; thyroid cancer diagnosed in 1978

    I misguidedly (putting it nicely) received radiation treatment for an "enlarged" thymus gland as an infant in 1953. I was diagnosed with malignant thyroid cancer in 1978 and thought I was out of the proverbial woods forever. Now I'm seeing evidence that cancer is appearing in various areas of the head, neck and upper chest of people with stories similar to mine.  I'm 66 years old now and was recently diagnosed with basal cell carcinoma on my upper chest and am wondering if it could berelated to my radiation treatment as an infant. I'm thrilled to have found this forum and will be checking in frequently. In the meantime, I'll check your blog link and would like to find out if you've completed a book in regard to infant radiation for enlanrged supposedly thymus glands. Thanks very much.

  • wrwoolley1
    wrwoolley1 Member Posts: 36 Member
    New here; thymus radiated in '53; thyroid cancer found in '78.

    I just discovered this forum. I was radiated as an infant for an "enlarged" thymus as a newborn in 1953 in Morristown, N.J. I was diagnosed with malignant thyroid cancer and had a thyroidectomy in 1978. I'm 66 years old now and thought I was long "out of the woods" as far as problems related to that early radiation, but I'm learning that people, with stories similar to mine, are being diagnosed in their later years with incidences of cancer in peripheral areas of the neck, head and chest. I'm now wondering if a diagnosis of basal cell carcinoma on the center of my upper chest could be related to the radiation treatment I received as a baby. I've joined this forum to share my story and to hear from anyone else who may have a similar one to tell. Thanks!

  • wrwoolley1
    wrwoolley1 Member Posts: 36 Member
    msgjanly said:

    Early 50's Liquid Radiation and "X-Rays"

    I had ear problems. I remember teachers were always sending me home because my glands were always swollen. They thought I had mumps. I did have them, but not that often. Anyway, for many years I have blocked out most of what happened back then. It actually all came crashing in a few years ago. I started remembering some of things I went thru. One of which was being held down by my parents so that the doctor could inject something into my ears. I remember my father joking that the smoke was coming out the other ear. It didn't, though; it came out thru my nose. I blocked it out for many years because I absolutely HATED having this done. I also remember having to lay completely still while I had, what I call x-rays, but it was radiation treatments. When I was 24, I had my second child and I developed numerous moles on my neck, on right side. The doctor at the time just snipped them off like it was nothing to be concerned about (this was in 1973).

    Now, fast forward many years later (I am 68 now), I had to have my cataracts removed in my 40's; I found out I have a hypothroid; always had hearing problems (now I have hearing aids, normal at my age, yes, but still....). I had a really bad cold back in May of this year. It is now July and I still have cough, and now my glands are swollen, mostly on my right side. I finally went to see my regular GP, mainly because I couldn't shake the cough, and she could not find anything clogged up. She prescribed an antibiotic and cough medicine and neither has made a difference. I will complete the pills. If no change, of course I will go back.

    I have not been diagnosed with any cancers, they don't run in our family (I know that is no guarantee). But as always, the stuff I had done back then always comes to the surface now, especially as I get older. When I was tested for my hearing aids, the doctors were dumbfounded when they looked inside my ears. It really does look like a bomb went off in there.

    The thing that I have found frustrating is that I have yet to find a doctor that doesn't look at me like I am crazy when I tell them what happened back then. They don'know anything about it. I actually live in Houston, Texas, home of the world famous medical/cancer center. I just want to find someone to take all this seriously. Something ain't right!

    Thank you for letting me vent on this.

    Doctor unaware

    I misguidedly (putting it nicely) received radiation treatment for an "enlarged" thymus gland as an infant in 1953. I was diagnosed with malignant thyroid cancer in 1978 and thought I was out of the proverbial woods forever. Now I'm reading evidence that cancer is appearing in various areas of the head, neck and upper chest of people with stories similar to mine.  I'm 66 years old now and was just diagnosed with basal cell carcinoma on my upper chest and am wondering if it could berelated to my radiation treatment as an infant. In the meantime, an endocrinologist I saw last year, who was about 30 years old, had no awareness at all about thymus radiation treaments on infants in the 1940s and '50s.  Very frustrating, but I'm trying to move forward and staying vigilant for other cancers that might show up in my head/neck area.

     

     

  • wrwoolley1
    wrwoolley1 Member Posts: 36 Member
    A poll, perhaps?

    Is it reasonable to poll people, who had their thymus glands radiated as infants and were later diagnosed with thyroid cancer, to see what incidences of cancer have shown up in more recent years? I'm 66 and have just begun to learn that other cancers have appeared in various parts of the head/neck area in people with stories similar to mine. My thymus was radiated in 1953 (as a newborn) and I was diagnosed with malignant thyroid cancer in 1978. I had a thyroidectomy and was just diagnosed with basal cell carcinoma on my upper chest. Wondering if it might be related to my misguided radiation treatment 65 years ago.

  • Grandkids10
    Grandkids10 Member Posts: 2
    edited September 2019 #58
    Radiation as an infant

    I was radiated at 3 Months for three treatments For enlarged thymus gland in 1959. in 1972 diagnosed with malignant thyroid cancer, which was removed. In 2002 was diagnosed with breast cancer. Now I am going through scans and testing for some transient blindness I’ve experienced. I am so angered after hearing all these posts because the first thing I do when I go to the doctor is bring up the radiation I had and it falls on deaf ears! My eye doctor referred me to the cardiologist because of the blindness issue and this is the only dr , my cardiologist who has heard me and set up all these test. And the one the he said to me that no one ever explained to me was that this radiation has been in my body all this time causing issues! Prayers for all of you.

  • cap33325
    cap33325 Member Posts: 1
    Strawberry birthmarks

    Like many, it seems, I was born with two strawberry birthmarks on my head and one above my eye.  I was treated multiple times in all areas with radium when I was six months old.  I have a depressed area on my skull.  In 1997, I was diagnosed with thyroid cancer when a nodule was found.  The nodule was removed with the surrounding tissue, which was positive for medullary, papillary, and follicular cancer.  Ten days later, the rest of the thyroid was removed.  I generally get blank stares when I tell any new physician of this history as a baby.  What other cancers or conditions should I be on the lookout for?

  • TxSun
    TxSun Member Posts: 1
    edited August 2020 #60
    Radiation on nose

    I was born in 1952 with a large hemangioma on my nose and cheek. Radiation was used to remove it. Sun protection wasn't used until about 20 years ago. I was told I would end up with thyroid cancer, which hasn't happened yet. Due to the radiation I have very little skin on the end of my nose and it has gotten thinner as I've aged. I have just been diagnosed with a basal cell carcinoma on my nose and am using a chemo cream to stop it. Does anyone have advice on how to counter act the swelling, blistering, and pain that is going to happen? (Now I'm glad masks are required!) I wonder if I'd had a skin graft years ago if that would have prevented the carcinoma.

  • Uhura
    Uhura Member Posts: 1 Member
    edited November 2020 #61

    Thymus irradiated in 1953; thyroid cancer diagnosed in 1978

    I misguidedly (putting it nicely) received radiation treatment for an "enlarged" thymus gland as an infant in 1953. I was diagnosed with malignant thyroid cancer in 1978 and thought I was out of the proverbial woods forever. Now I'm seeing evidence that cancer is appearing in various areas of the head, neck and upper chest of people with stories similar to mine.  I'm 66 years old now and was recently diagnosed with basal cell carcinoma on my upper chest and am wondering if it could berelated to my radiation treatment as an infant. I'm thrilled to have found this forum and will be checking in frequently. In the meantime, I'll check your blog link and would like to find out if you've completed a book in regard to infant radiation for enlanrged supposedly thymus glands. Thanks very much.

    Irradiation of Thymus in 1953 also

    I was born in 1953 also - with a relatively small hole in between the ventricles of my heart, and on top of that they decided my thymus gland was "too large" so it was irradiated. Unlike you, thankfully I was not diagnosed with any thyroid cancer but in 2005 I developed a squamous cell carcinoma of the tongue. Thankfully it was very early and after a thorough removal of the spot at Memorial Sloan-Kettering in NYC, it was completely removed and did not need further treatment. (Helps to be a hypochondriac and run to the doctor immediately with any abnormality). While doing scans of the thyroid as a follow-up to my original cancer diagnosis, they found I had two nodules on the left side of my thyroid. I also had had a strange temporary, painful swelling of the thyroid about ten years earlier that went away with the use of anti-inflammatories. I had low thyroid numbers right after that but they normalized way before the nodules were discovered. I had two sets of needle biopsies and neither showed cancer in the thyroid but i continue to be monitored for any change in TSH, T4 and all that. Luckily, so far, all is normal. But I have often wondered whether the tongue cancer was a result of the irradiation. I had smoked in the distant past but had been tobacco free for 30 years when the tongue cancer developed. I also drank a good amount of alcohol, mostly wine with meals, which could have been another risk factor. I gave up drinking for 4 years after that and then went back to it and never got another cancer (knock wood). I'm 68 now and have quit drinking again just to be careful. But I am always wondering whether I'll get something worse as a result of that irradiation as a baby. So far so good on the breast cancer risk, which is another thing we have to worry about. Had a scare about 20 years ago and had a breast biopsy but it was only dense tissue, not cancer. Amazing how doctors in that day were so eager to use radiation on helpless babies. I mean seriously, whose idea was that?!