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

Becky7213 said:

Thymus Irradiation
Well, yes, I guess most of us know that the irradiation that was given to us in childhood and infancy was a rather large error. There is a series of very good studies from the University of Rochester, NY. They followed a group of children with irradiated thymus glands for many, many years and reported on the after effects. It can be found online. If you have trouble finding it email me and I will send the link.

My own story-Premature birth in 1945-just 5lbs. Had trouble breathing-Peditrician diagnosed an enlarged thymus gland and decided to use radiation to shrink it at 6 weeks of age. 3 treatments. My hair all fell out when I was 2, it did grow back. At 17 I was hospitalized with my first autoimmune disease-Ulceratvie Colitis. Nearly died. Battled that since. Then came Hashimoto's Thyroid Disease, and recently breast cancer.

Would like to correspond with others who have had side effects-maybe create a group-something like "The Forgotten Children" since many of the kids died from leukemia and throid cancer before adulthood.

Wishing all good health.

Carol

Hello. I just discovered this board, and am grateful to find a community of people who are survivors of childhood thymus irradiation. I was born in 1957 and had several radiation treatments for an enlarged thymus at Spartanburg Hospital in Spartanburg, SC (USA), in the spring of 1957. I wasn't even aware of this until I was college-aged and my mother read an article in Time magazine about a high rate of cancer among children who had had this procedure. I mentioned this to a doctor, who examined me and Lo! found a thyroid tumor which turned out to be malignant. I had the left lobe and isthmus of my thyroid removed in 1976 and have been on synthroid ever since. I did not have any radioactive iodine treatments, although an aggressive endocrinologist 20 years later wanted me to either have surgery to remove the remaining thyroid tissue or to have radioactive iodine treatments.

I haven't had any further problems with my thyroid cancer, thank goodness, but I've had chronic sinus problems all my adult life and multiple infections a year. When I had allergy testing about 18 years ago, the allergist found that, although I didn't have standard allergies, I had a very high eosiniphil count and a tendency to inflammation. He wondered at that time if it might be related to my history of thymus irradiation. About ten years ago, I had an extremely rare tumor in the bladder called a paraganglioma or pheochromocytoma, which was removed by a urologist.

Seven years ago, and again last week, I have had an occlusion of a branch retinal artery (in the eye); I am currently undergoing a slew of tests to try to determine the cause, but the previous slew of tests 7 years ago came up inconclusive, and so far the ccardiologist has not found anything that would make meprone to blood clots. However, in testing this week, my sed rate came back at 63, which is high and means that I have a high amount of systemic inflammation in my body and is often linked to immunodefiencies. Doctors have not yet begun to investigate this result, but I am suspicious that this is related to my zapped thymus gland. Has anyone else had unexplained high sed rates? 

Thanks for any insights,

Pam

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.

 

Hi!

I hope you get this message.  The need for information about our status is apparent but we are a diverse group of people and so spread out over the world.  I had radiation treatments for bad tonsils.  I am positive that I had four treatments maybe more.  What I find fascinating was the follow up that the government was doing since I had received the treatment through the military medical system…now exactly where is that information?

I have had two cancers (both rare) one benign tumor removed from my tongue, and I now have tinnitus and burning tongue an indication of dysesthesia.  So many issues but if I mention it to doctors I get the deer in the headlights look.  I did receive an honest assessment from an oncology team in the late ‘90s. 

It was through a university system and it was for the fifth episode of cystosarcoma phyllodes (rare enough cancer to be not well studied).  I bluntly asked the oncologist with specialty in chemo how closely was the cystosarcoma  phyllodes associated with the radiation and the answer was vague…maybe maybe not. 

I have had deteriorating teeth my whole life and I had surgery for a spinal vertebra that was growing into the spine upper neck position (C4-5).  The indicators for radiation involvement are a little more tentative with these but it’s odd that all of the problems are in my upper body.

I have had health issues my whole life and I was also diagnosed with hypothyroid but this episode was (I feel) in reaction to fear that there might be complications from the irradiation and it was in the military medical system.  I have had low thyroid function all my life was treated with synthroid and now have discontinued use.

I have looked into the history of our group of people and what is fascinating is that they are again using radiation to treat benign conditions like ours…don’t we ever learn?  But without investigation and a core of knowledge many doctors are unaware of the problems because there has never been a medical or patient “critical mass” to deal with the issues.  

I hope this finds you well and at the least validates that your hunches and guesses are not unfounded.  But where to get a comprehensive treatment and approach to your problems...sadly I have no answers.  Let me know if you would like some of the web sites I have visited.

Doug SSBN 618 said:

Hi Teddy 4050,
    I too was

Hi Teddy 4050,

    I too was radiated with Nasophyrngeal Radiation Treatments in 1963, US NAVY, Submarine Service. I was 17 years of age. I had Aerotitus Media, {blocked ears} from pressure.I was NOT told that they were performining a radiation treatment on me. In 1998, I developed Hyperthyroid Disease, Corroded artery of Neck, {requiring surgery}, Depression, Thyroid Nodules, Diabetes II, severe dental problems, High Cholesterol, and Hypertension. In 2011, I began internet researching my thyroid disease, I accidently stumbled upon an article about Military Nasopharyngeal Radiation, SUDDENLY, the light bulb came on and I realized that this was the treatment done to me, 45 years ago. I have suffered, horribly for 12 years now with these diseases both physicially and emotionally. I have NO family history of thyroid disease, thus I firmly believe that my thyroid disease is a result of the Radiation Treatments in 1963, and ALL the other ailments are the secondary effects of the thyroid disease. I too have filed for military disability, my claim is in the appeal process now. I have not developed Cancer as yet, but I live in daily fear and worry.

I would be interested hearing about your claim and denial from the VA and any other similar stories. Did you develop any thyroid diseases {problems} before removal?   Have you experienced any of the other diseases {ailments} that I named as SECONDARY? All of my research, has indicated a firm and valid connection between these diseases and Thyroid Radiation. One must remind the VA, that these treatments were done in a haphazard routine manner if compared to todays standards of Radiation Treatment.

Good Luck,

Doug.

...all over the world. And get this they are using radiation to treat a disease that they know is linked to childhood irradiation…acoustic neuromas.  These are benign tumors of the brain with a laundry list of symptoms associated with it.  It’s like a nightmare..  How do I know?  I have acoustic neuromas!  So I theoretically would get radiation treatment for a problem that radiation caused in the first place!

I wanted to ask if you have researched Pubmed?  Some articles are in full, some only in abstract and some highly technical but its a great resource!  All the best to you!

k61zo said:

Thymus Irradiated

Born in 1951, I received radiation for enlarged thymus as newborn.  The VA is recommending my thyoid be removed.  Just a few days ago I got fine needle biopsy results that it is "inconclusive".  This is the 2nd time in about a year that a fine needle biopsy has been done on my thyroid which is lumpy and bumpy and has nodules it shouldn't.  The ultrasound a few weeks ago is what prompted this last biopsy - appears things are growing - albiet slowly. First bx also was "inconclusive."  In my 20's went into the doctor with what turned out to be goiter. I've had Hashimoto's for about 40 years and on synthyroid.

It is comforting and anger-provoking to know there are others.

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.

When I was a baby I had a strawberry mark on my face.  My MD told my mom that she could take me to "radiation treatment" to help it go away.  I read a study follow up of these children years later as adults - most of which were in Norway/Sweden etc. 

I have just been diagnosed as having Invasive Malignant Melanoma and I am wondering if those radiation treatments had something to do with this.   The xray machines that they had back then were very high dose and out of control, nothing like the levels today. 

It would be great to see a few more in this group tell their tale.  

Thanks.

SNOWFLAKE55 said:

Strawberry Mark as infant: Radiation treatment

When I was a baby I had a strawberry mark on my face.  My MD told my mom that she could take me to "radiation treatment" to help it go away.  I read a study follow up of these children years later as adults - most of which were in Norway/Sweden etc. 

I have just been diagnosed as having Invasive Malignant Melanoma and I am wondering if those radiation treatments had something to do with this.   The xray machines that they had back then were very high dose and out of control, nothing like the levels today. 

 

It would be great to see a few more in this group tell their tale.  

Thanks.

Hello! I also was born with a large strawberry birthmark, just behind my armpit. This was in 1961. Our family doctor recommended that I have the radiation therapy to remove the birthmark because it would be irritated by my bra strap as an adult, and might become cancerous. (??!!) As you mentioned, I also have a deep impression where the birthmark had even. I have no recollection of this but my older sister tells me the treatments took place when I was an infant, that I screamed while they held me under the machine, and that we went numerous times to the clinic where the treatments were given. The clinic and the doctors are now long gone. Interestingly, although I was born in a small town hospital in Wyoming, the clinic with the radiation equipment was located in a TINY town about 100 miles away. I am fortunate to have had no cancer to date. I have had severe allergies all my life, numerous ear infections as a child, sinus polyps, severe acid reflux and Barrett's esophagus beginning in my 30s, IBS, and was diagnosed with osteoporosis at age 52. I have had mild to severe anxiety disorder since childhood, along with depression - although this is in my family. I have tinnitus which is severe at times. I have often suspected that my thyroid is low, but whenever it has been tested it has been at the bottom of the "normal" range. There is also, however, thyroid disease in my family, so hard to say if this is genetic or a result of the radiation. I am thankful to others who have shared their experience here. There are a few posts that mention medical journal articles re rhis topic, so I will turn to those now. Thank you! 

SNOWFLAKE55 said:

Strawberry Mark as infant: Radiation treatment

When I was a baby I had a strawberry mark on my face.  My MD told my mom that she could take me to "radiation treatment" to help it go away.  I read a study follow up of these children years later as adults - most of which were in Norway/Sweden etc. 

I have just been diagnosed as having Invasive Malignant Melanoma and I am wondering if those radiation treatments had something to do with this.   The xray machines that they had back then were very high dose and out of control, nothing like the levels today. 

 

It would be great to see a few more in this group tell their tale.  

Thanks.

Hi, I live in the United Kingdom, and quite by chance came across your site .  I hope you will find my story of interest.  I was born in 1946 in York (North Yorkshire).  I was a large baby 11lb 3 ounces.  I was also born with a port wine birthmark which ran from under My chin over the right hand side of my face through my eye and over my head down to the nape of my neck.  The following is a small amount of information passed onto me via my mother who is now dead, she never really talked about it.  Anyway my mother decided that as I was a girl and she had been told that the birthmark would grow with me she would do all she could to find help for me.  After sitting it out at the local hospital she was put in touch with a Dr at Guys Hospital in London who was carrying out experimental treatment and he agreed to include me in his programme.  He started his treatment in 1947 by dropping liquid radium onto my face and brushing it into the birth mark over a 6 month period.  He told her that this liquid was being put into atomic bombs so I would assume it was pretty powerful stuff.  I had to have my hands tied together as nothing was to touch it.  Well, it worked the birthmark faded, but I unfortunately did not start to grow properly until I was about 10. I don't know if this was too do with the treatment or not.  I only got to 5ft 1in, which was small in my family.  As I grew more layers of skin, the shadow of the mark disappeared.  Now let's go ahead 60 years, I am now 68.  In October 2013 I found a small lump behind a tooth sitting on my jaw bone.  This turned out to be Cancer and as a result had part of my jaw removed, the problems I now have in my mouth is a whole new story.  Last month I went to my consultant for my monthly checkup, he found some abrasions in my cheek area and after a quick biopsy told me that the Cancer had returned.  Shock dose'nt come into it I can tell you as I am still coming to terms with the first one.  I go back into hospital next Wednesday for them to remove it and do a skin graft from my thigh into my mouth.  I have never smoked, and very rarely drink.  I do have sleep apnea, and a balance problem called BPPV a few years ago developed shingles in my eye, the one on the side where the birthmark was.  It is quite strange that the only health problems I have had was from my neck upwards.  Now I don't know if all this is related to the treatment I received as a baby, I have no documentation and do not know if my parents were told of any long term effects.  My mother died 12 years ago having developed bowel cancer, again I do not know if her Cancer was related to my treatment, but she always seemed to be ill with one thing or another.  Though I have Cancer again so soon, I can only thank my mother for what she did, as I cannot begin to understand what kind of life I would of had.

bonniesue said:

radiation for mole removal as 2 yo
also had multiple rads in the 60's for a benign mole on my head age two. go for ultrasounds occasionally. t3 t4 and tsh are ok. anti-tpo is quite elevated ?110. saw endocrine who said to get ultrasound of thyroid every 2 yrs. no nodules seen. said not to worry. any advice? happened upon posts and have concerns. thanks.

Hi, I also had rads for two moles and then more rads the keloid scars removing them caused. How is your thyroid now? Best, Deech

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.

 

I agree, we should have a group that is dedicated to collecting and comparing our symptoms. Have you started one or found one? Kind regards, Deech

kathygori said:

Radiated for thymus in the 50's

 I was also radiated for a supposedly enlarged thymus. I was informed that I was at risk for cancer and was regularly checked. 25 years ago while in my late 30's I was diagnosed with an aggressive breast cancer. I was lucky . Even though I was given a "poor prognosis"  after surgery, and chemo, I'm still here. 

   There was no indication of any genetic link and my cells showed poor differentiation obviously from the radiation I recieved. I asked Dr. Brenner my radiologist at Cedars Sinai in LA and  UCSF believed that it came from back scatter radiation as a result if the radiation I received as a kid. 

  I'm very interested in this subject and have wondered about other people who've experienced this

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