Radiation as a Child for Enlarged Thymus

2manyrads

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. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease.

My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later.

After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan.

After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years.

The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered.

I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled.

I am currently working on a book about the history of radiation for benign conditions, especially on children, and would be very interested to hear other’s stories.

melody2348

too many rads

I had a similar situation as a child.  When I was four, I had a swolen gland in my neck.  I was in the hospital two weeks, the bill is in my baby book.  I had shots the first week, and the second week they took me to a room with a big machine and strapped me to a table and put a large black thing against my neck which made a buzzing sound for a long time.  They did that a lot.  My parents didn't remember how often it was done.  I had to have my thyroid removed a few years ago because it was full of tumors, and producing too much thyroid hormone.  I am going through Breast cancer on my left breast for the second time, and had an invasive cancer in the right breast 10 years ago.  I had radiation on the left breast but decided against it on the right.  I would be interested in hearing any information anyone has on this subject,

css055

Radiation for Enlarged Thymus

Thank you for posting - I too received radiation for an enlarged thymus in 1950 when I was an infant.  I've had thyroid issues for about 10 years and just this week received test results indicating I have cancer in my left breast.  The biopsy results stated stage 3 cancer.  On Monday I have an MRI scheduled and we'll see where we go from there!

Have you finished your book?

I find it puzzling / ironic that after the sugery I'll receive radiation!!

 

kathygori

css055 said:

Radiation for Enlarged Thymus

Thank you for posting - I too received radiation for an enlarged thymus in 1950 when I was an infant.  I've had thyroid issues for about 10 years and just this week received test results indicating I have cancer in my left breast.  The biopsy results stated stage 3 cancer.  On Monday I have an MRI scheduled and we'll see where we go from there!

Have you finished your book?

I find it puzzling / ironic that after the sugery I'll receive radiation!!

 

Me too

i was radiated for my thymus as an infant and was diagnosed with breast cancer in 1990 while in my 30s , now 25 years later II've been diagnosed again with breast cancer in my other breast. I had no thyroid issues but certainly a lot of breast cancer!

Barb1319

Me too also

I was irradiated in 1946 at 6 months for "enlarged thymus gland", which of course was a made-up condition by idiot doctors who were irradiating people willy nilly for whatever. Diagnosed in 2013 for ER+HER2+ breast cancer. Had mastectomy, chemo (awful), spent months in a fog, scared myself and family and still taking a daily, side-effect laden pill for 5 years.

My parents were very compliant with whatever the doctor said, as many people were in that time. So they had me irradiated. Years passed, the hospital conveniently "lost" all the records, my parents didn't even remember how many treatments i had. I was pregnant in 1975 when I read in the Chicago Tribune that these babies were part of an epidemic of cancers in their 20s and 30s, and were being recalled to the hospitals where they were treated for thyroid scans. That's when my parents told me, but no on knew what awaited me in the future. I guess our numbers are in the thousands. No generally agreed upon doses at that time, machines were pretty much unregulated, so thousands of us were/are walking time bombs. My oncologist said the risk is lifelong, though diminishes a bit with age. Good luck to all of us!

Peggylou46

Enlarged thymus at birth

I was born in 1955 in Michigan. Before my mother even held me, I was whisked away for radiation treatments to my neck for an enlarged thymus. Fast forward 55 years, I noticed a bump on my neck. I had an ultrasound performed which showed a larger nodule on my thyroid on my left side and a very small one on my right side. My doctor only biopsied the larger one and it was not suspicious for cancer. He had me come back in 6 months to biopsy the same one again. No change. I asked if he was going to biopsy the smaller one, but he said it was VERY tiny and was not going to. I asked him to do it and it was cancerous. We caught it in time. I had my thyroid removed and there was no further treatment needed. Ten years later (today), I have been told by my endo at our annual exam to see a surgeon as it appears from a CT scan that she ordered because my PTH hormone levels were high, my parathyroid glands have benign tumors. I had never heard of PTH (parathyroid hormone) blood test, but if that hormone is too high, it can cause calcium to be taken from your bones. Your parathyroid regulates calcium in the body. So, that is where I am today. I have been very healthy my 67 years on this earth, but I did struggle with Rheumatoid arthritis for 25 years, until I was healed of it four years ago. Truly a miracle to me. In summary, if you were one of those unfortunate infants that was radiated, I would recommend to be proactive in getting tested annually (thyroid, breasts, etc.). You could detect something early if you are proactive.

allanhansen

Was born in L. A. In 1952 and diagnosed with an enlarged thymus. According to my "baby book" I was given several X-Ray treatments to reduce its size. It is 9/21/22 and I just listened to an amazing story on Radiolab (an NPR show) about current research on the thymus, including 1950's treatment for an "enlarged thymus" in the 50's. Fun fact: they didn't figure out what the function of the thymus was until the 1960's. It's even more fun to hear that the thymus is very large at birth but by the end of puberty it is much, much smaller. Was my thymus "enlarged" or just a normal big honking baby thymus?

I highly recommend y'all check out this discussion of past, present, and future thymus research which includes how transplanting a small portion of a heart donor's thymus along with his/her heart can prevent organ rejection.

Best of luck to everyone dealing with cancer issues!

Joheff

Me too..thymus radiated as an infant. Anybody else dealing with benign thyroid nodules, hyperparathyroidism ( adenoma removed in my 60's), and questionable health issues in my 70's, relatable? May have onset of reoccurring hyper or hypoparathyroidism now, in my early 70's.

Hair analysis in my mid 60's indicated extremely high level of uranium (from massive radiation at some point, or ongoing exposures).

kodsgy

Born in 1955, I too was irradiated as an infant for enlarged thymus and sinus issues. Soon thereafter, the medical establishment stopped this barbaric practice after realizing that ALL healthy babies have thymuses larger than the cadavers of orphaned infants that were originally used to study infant anatomy (orphaned infants back then were typically unhealthy/malnourished). I've never had cancer, but some weird disorders that I wonder about; that's why I'm here. I’ve looked for support groups for irradiated infants, but this is the only one I've found. I’ve always had low blood pressure, cold body temp and extremities, low energy, erectile dysfunctions, metabolic/digestion issues, etc. I wonder how many other victims have similar issues.

mjarrar

I have been counting myself as lucky because I did not get cancer from being irradiated for an enlarged thymus in 1946. But, I'm 77 now, and from what I gather, it's still possible. I was left with a weak, jagged-sounding voice though. When my son was little I struggled to read him bedtime stories because my voice would wear out quickly. The other kids at school did make fun of it and even as an adult, people comment on it. It's a domino effect. Even at my age, I still sound like a child. Surreal that one thing like that can cause so many problems down the road. I've had several rare autoimmune conditions, as well as goiter, unrelenting depression, and extreme fatigue both in childhood and adult years. I had severe endometriosis and I bet after a few years they'll discover it had something to do with that too. After Levothyroxine came along, managing underactive thyroid became better. I really didn't get a good start in life and sympathize a lot with those who didn't either. I just remember that in my childhood I was always exhausted too. People didn't understand that it wasn't that I didn't want to do things, but that I just couldn't. People still see me as a "whiner." It's just weird now to think I'm not out of the woods yet and could still get cancer. I have the best hopes for all of us.

MjWalker

I, like the people above, had these treatment at just a few months of age in 1947. I never knew, until my Mom told me sometime in 1970's due to the TV show, Dr. Marcus Welby( if I remember correctly), actor, Robert Young. Then she explained, that my doctor thought it was best I have this treatment for my Thymus that didn't seem to shrinking properly due to not beable to breath at night. Mom said she used to have to hold me upright to breath so we could sleep. Now I think it was probably Bronchial Asthma that the last few years I have been dealing with brought on by allergies that is being treated by my Allergist. For my whole life I have had no immune system that worked very good. I have had breast cancer in 1990 and cervical cancer in 1981. Diagnosed like another lady with endometriosis at 16 years old and surgery to remove fibroids. And the last fibroid removed in 2003 with what was left of my ovaries. When diagnosed with the breast cancer at M D Anderson, my doctor at the that time told me she couldn't say that the treatments when as an infant was the cause of the breast cancer, but possible, maybe. I have problems with my Thyroid and have been taking Synthroid in 1993 diagnosed with under active thyroid. Now, battling Bronchial Asthma and I wonder if possible this too was caused by the radadition treatments in 1947. Who knows.

IBrustein2

We were born prematurely in 1947. My twin brother was born with his umbilical cord around his neck and was a blue baby. We each only weighed 5 lbs.

When we were 3 months old, the doctor told my mother my breathing was concerning and referred my mother to a radiologist to give me radiation treatments to shrink my thymus to prevent SIDS. Just me, not my twin brother.

2013 I was diagnosed with Lupus (SLE). 2022 my Rheumatologist referred me to my Hematologist Oncologist because I tested for a M Spike. My Hematologist Oncologist also treated Lupus patients.

After many tests and a bone marrow biopsy, the diagnosis was not related to my SLE, it was Non-Hodgkins Waldenström Macroglobulinemia Lymphoma. That diagnosis was my first cancer. My Hematologist Oncologist set up an active surveillance protocol of blood tests and Pet/CT scans.

January, 2023 I found a lump on my scalp. Thinking it was a hematoma I went to my Dermatologist's office. Found out it wasn't a hematoma. After cytology and biopsy it was diagnosed as Diffused Large B Cell Lymphoma. That's when I learned you can have two different blood cancers at the same time.

My Hematologist Oncologist arranged for me to get a port inserted and ordered R CHOP for chemotherapy treatments.

He also ordered a whole body PET/CT scan which showed that the bump was an aggressive lesion growing on my scalp and eroding part of my frontal bone calvarial. He referred me to my Radiologist Oncologist who plotted my radiation treatments for the DLBCL lesion on my scalp. Between the Chemotherapy and Radiation treatments, I was in remission for both Lymphomas.

However, my Hematologist Oncologist ordered another active surveillance protocol, which included Whole Body PET/CT scans. December, 2023, the scans lit up an area on my right breast. My Hematologist Oncologist referred me to the Breast Cancer Oncologist. After a mammogram, ultrasound biopsy, mri of both breasts, I was diagnosed with invasive ductal carcinoma carcinoma of the right breast cancer. Had a mastectomy of the right breast in February, 2024. We couldn't do Chemotherapy because of the R CHOP treatments. The Radiation Oncologist plotted 33 radiation treatments that were scheduled Monday through Fridays. Started treatments after stitches were removed. Have been in remission for my third cancer since July, 2024. Hematologist Oncologist started active surveillance protocol again.

In October, 2024, the Whole Body Pet/CT scan lit up an ovarian cyst on my right ovary. My Hematologist Oncologist referred me to the Gynecologist Oncologist Surgeon. Had an appointment with him in November, 2024. After more radiology tests, he recommended surgeries to remove my ovaries and tubes. I had a part hysterectomy in the 1970's for fibroids. Kept my ovaries to avoid early menopause. I asked him to postpone the surgeries because I was still recovering from the mastectomy and the Radiation burns.

In February, 2025, the cyst grew. Saw the Gynecologist Oncologist Surgeon and his office arranged for my surgies, an oophorectomy and salpingectomy to be performed in the hospital's OR in April. He was coordinated the surgeries with hospital's pathologist and cytologist to be in the OR as he removed the cyst, ovaries, and tubes so the could identify if it was cancer; and immediately identify if it was Lymphoma, Breast Mestasis, or Ovarian. The Gynecologist Oncologist had been sure it was Breast Mestasis.

The pathologist and cytologist identified it as an ovarian cancer. Cytologist identified it as High Grade Serous Ovarian carcinoma.

Although, cancer was removed, both my Oncologists were concerned about the possibility cells may have escaped to other parts of my body. My Hematologist Oncologist ordered another Chemotherapy Protocol following NCCN GUIDELINES for High Grade ovarian serous cancer. Started my 1st round in June. My last round will be October 9th.

My most recent Whole Body PET/CT scan did not light up anywhere in my body.

My Hematologist Oncologist informed me when I had an appointment with him when I had my appointment and 5th round in September. He will continue ordering active surveillance after I ring the bell again.

I did remind him again that I'm pretty sure that these three years of being diagnosed with 2 blood cancers and breast and ovarian cancers must be related to being irradiated. I also think my mother was diagnosed with cervical cancer in the 1960's because she held me in her lap during my radiation treatments .

I don't know how active this discussion is in 2025 is. I'm just glad I found it.

Many of the doctors, Residents, and Medical are unaware that irradiated infants grew up into Senior Adults who are presenting with immune disorders, blood cancers, and multiple body organs cancers. When I spoke to them about it, the common responses were shock from the Residents and Med students. Doctors either reacted surprised, or did not see the possibility of a connection for being a reason why I presented with 4 cancers within a three year period.

The hospital I go to for my cancer care is known for their cancer care and research, but the information about the Infant Irradiated Thymus Protocol was apparently never taught.