Radiation in Infancy

2manyrads
2manyrads Member Posts: 16 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
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. You may also contact me at 2manyrads@gmail.com

Comments

  • bluerose
    bluerose Member Posts: 1,104
    #2
    Interesting but not surprising
    I am a 22 year survivor of NHL that was diagnosed when I was an adult but after 22 years there are already differences in the way they deliver radiation even in this short a period of time. I have always said that in a few years from now they will look back on some of the present day treatments as being extremely harmful and people will then be in a position such as yours or worse.

    I have many side effects that are long term effects of treatments, both chemo and radiation and it all came as quite a shock years later when I couldn't completely recover from initial cancer treatment. Look back at cobalt treatments years back but even though it seems brutal now believe it or not there are still cobalt survivors out there but what shape have they been in throughout their lives.

    Cancer treatment is still in its infancy but more and more are being saved and cured in fact from new treatments but at what cost? I am not saying that I would not have done my treatments even though they nearly killed me a few times and I suffer from many dibilitating conditions because of them now, I am just saying that there is a cost for a cure. I have been able to see my children grow up since diagnosis and now they are getting married and graduating from university, they were tiny when I was diagnosed. I wouldn't have traded that time with them for anything but there is often a great sacrifice to be made as well. I was sick throughout most of their growing up with late effects but still I was there.

    All the best. Blessings, Bluerose
  • stormshelter
    stormshelter Member Posts: 1
    #3
    cobalt in infancy
    I also was given cobalt when I was a baby,also to shrink the thymus. I never knew anything about it until the mid 70's when the hospital where I was born contacted my mother to see if I was still alive and if I was,was I healthy. They made arrangements for me to have a thyroid scan. At that time it was normal and nothing was said about follow up. Last October I happened to mention it to my family doctor because my brother had just had surgery for thyroid cancer. She suggested I have an ultrasound just to be on the safe side. It, of course, was not normal, I had a scan followed by biopsies, then surgery. I had papillary carcinoma. The thyroid is gone, the cancer is gone. I'm taking synthroid. I'm dealing with the weight gain, or trying to, the other symptoms have pretty much resolved. I'm one of the lucky ones. I wonder how many of us there are?
  • JRT500
    JRT500 Member Posts: 1
    #4
    THymus raditation--Hodgkins

    HI--new to this site. Looking for someone with similar issues.

    I was b 1952 (Western NY) and was radiated for an enlarged thymus at age 1 week. My Mom and Dad are deceased, so I am unable to ask any further questions, but my Aunt recalls that there was some discussion of a blood transfusion for me at that time--no clue why.

    I had no issues with cancer until 3 1/2 years ago, when I was diagnosed with Hodgkins lymphoma. I was treated with Chemo--and released in Feb, 2018--and my hemoglobin numbers were normal by the end of Feb, 2018. Followup testing shows no recurrence of that cancer.

    However, 3 months after the chemo (May, 2018), my Hemoglobin took a nosedive. No apparent reason--and my Oncologist and a Specialist never found a cause. But my numbers dropped to a 5.7 (lowest), and I had several blood transfusions.  After 3 months of tests to determine the cause, in August of 2018, my hemoglobin shot back up--to a 14.0. No apparent reason--as no treatment had been done. Doctors just shook their heads.

    No issues with Hemoglobin until this May (2021)

    In May, I began feeling tired, out of breath,etc--the doctor did blood work, and my hemoglobin had dropped to a 7.5--from a 13.x which I had in Dec, 2020. Again,. no confirmed reason for the drop, and the doctor is again out of ideas, and has me scheduled to visit a Specialist , again.

    The symptoms in 2021 are the same as 2018 and are 100% identical to a condition called "Pure Red Cell Aplasia"--and I am awaiting my next appointment to discuss with the doictor--as my wife and I found this data in our own internet searches. Anyway, RPCA can be caused by several factors--one of which is directly traced back to issues with the Thymus. Because of the radiation from my "Babyhood" I am suspicious that this RPCA, and maybe even the Hodgkins could be tracked back to the thymus radiation

    Has anyone else had anything similar? Please let me know. IT's not a very comforting feeling to have your doctor shrug his shoulders and say he "has no idea" what is wrong with me.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited August 2021 #5
    JRT500 said:

    THymus raditation--Hodgkins

    HI--new to this site. Looking for someone with similar issues.

    I was b 1952 (Western NY) and was radiated for an enlarged thymus at age 1 week. My Mom and Dad are deceased, so I am unable to ask any further questions, but my Aunt recalls that there was some discussion of a blood transfusion for me at that time--no clue why.

    I had no issues with cancer until 3 1/2 years ago, when I was diagnosed with Hodgkins lymphoma. I was treated with Chemo--and released in Feb, 2018--and my hemoglobin numbers were normal by the end of Feb, 2018. Followup testing shows no recurrence of that cancer.

    However, 3 months after the chemo (May, 2018), my Hemoglobin took a nosedive. No apparent reason--and my Oncologist and a Specialist never found a cause. But my numbers dropped to a 5.7 (lowest), and I had several blood transfusions.  After 3 months of tests to determine the cause, in August of 2018, my hemoglobin shot back up--to a 14.0. No apparent reason--as no treatment had been done. Doctors just shook their heads.

    No issues with Hemoglobin until this May (2021)

    In May, I began feeling tired, out of breath,etc--the doctor did blood work, and my hemoglobin had dropped to a 7.5--from a 13.x which I had in Dec, 2020. Again,. no confirmed reason for the drop, and the doctor is again out of ideas, and has me scheduled to visit a Specialist , again.

    The symptoms in 2021 are the same as 2018 and are 100% identical to a condition called "Pure Red Cell Aplasia"--and I am awaiting my next appointment to discuss with the doictor--as my wife and I found this data in our own internet searches. Anyway, RPCA can be caused by several factors--one of which is directly traced back to issues with the Thymus. Because of the radiation from my "Babyhood" I am suspicious that this RPCA, and maybe even the Hodgkins could be tracked back to the thymus radiation

    Has anyone else had anything similar? Please let me know. IT's not a very comforting feeling to have your doctor shrug his shoulders and say he "has no idea" what is wrong with me.

     

    Anemia

    JRT,

    Anemia is discussed pretty frequently here, so if you look about at Post titles, you may see something relevant.  You also may wish to start a new thread, since this one is 11 years old.  From my own, personal experiences, I know that anemia is very frequently inexplicable in cause, even for a first-rate hematologist.  My own episodes have never been explained.   Be certain that your 'doctor' is in fact a hematologist.   Anemia can readily be a flag that some form of lymphoma or leukemia is prepping to show itself.  I DO NOT know if RPCA is in any way related to aplastic anemia, but aplastic anemia is an aggressive disease with poor prognosis.

     

     

     

Discussion Boards