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Radiated on purpose as an infant in the 1950's, cancer developed years later
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And thank you for expressing your appreciation so effusively! Although I'm not exactly delighted to learn that surgery is in your future, I'm thrilled that you have answers that had previously eluded you and medical professionals. You've reminded me how amazingly complex our bodies are, as well as how each of us has a unique physical system that takes very specific consideration to manage properly. Count me among the many in this forum who wish you the best for successful surgery and a more healthful future! —Bill
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I am so happy for you to find a knowledgeable medical professional! My parents were not told I was having radiation I was told surgery TA !
I wish all my fellow NRI patients to advocate for themselves better than I did ! And to advocate for financial compensation writing Congress and Reps who work for Americans for unethical radiation used during 1940-1970’s as I found a article on Wiki by a senator in 1990’s admitting the radiation we had as children was unethical! The article mentioned nasal radium ! I hope you all join me in this fight for compensation thru RECA or Energy dept ! -
This is why it important we band together to tell our stories on how this unethical practice used on growing children with some patients not having side effects late effects such as my sister! But I look back on my life since teens having a sore in nostril never healed doctors told me use Ponaris emollient which at 69 yr I still use ! Then the long list of benign tumors , atypical suspicious B CellNHL, PET then MRI orthopedic doc said I had Fibula midst mets then Moffitts suspected Sarcoma ! Then oncologist telling me “ you would be dead by now “ referring to fibula Mets ! Which he said 2 yrs is life expectancy!
I stopped all doctors elected hospice -
Fascinating! I had never heard about the Radiation Exposure Compensation Act. If I did, I would have dismissed it because it appears to exclusively cover cases of people who worked with radiation or were downwind of test sites. I assume cases of cancer from radiation treatments would be dismissed because they don't seem to be covered by the RECA. Perhaps that's why you're encouraging us to join together in advocacy? If so, count me in! The RECA claims are only being accepted until Dec. 31, 2027, if my research is correct. I'm eager to learn more about what you've done to advocate for yourself and if you've made any headway at all. Also, do you still have access to that Wiki article from a Senator in the 1990s? If so, please provide a link? Thanks so much for your interest and encouragement! —Bill
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I am so very sorry to hear these details about your medical history and that you have elected to enter into hospice care. I am 72 and have been very vigilant, in recent years, about monitoring health problems that can result from my radiation "treatment" as an infant. So far, I have been fortunate to have only been diagnosed with skin cancer spots in the area of my neck and chest. I'm somewhat "on pins and needles," however, about what other issues might arise as I age. I hope you have family members who might be willing to take up your cause and pursue some sort of compensation or, at least, an official admission of what happened to us and tens of thousands of others. Even now, I think, radiation in diagnostic tests is being used far too cavalierly and should be better controlled. Again, thank you for your feedback. I sincerely hope your time in hospice will be more comfortable than you imagine.
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I hope all of fight for what we deserve! It is not about the $ but it is the right thing to do so no other child goes thru what we have! Let me know if you find other places ! This decline has affected my ability to get things done.
Physicians social responsibility is another site of medical professionals working to help pts get compensation for radiation exposure! I don’t have confirmed cancer diagnosis due to oncologist not aware or myself that I had NRI but they also don’t seem to care or be knowledgeable in this fact that : parents were not told radiation was used in surgeryPatients certainly did not know ! To find out at 68 yr old is negligence I believe on the part of medical professionals who take oath “ Do No Harm”
Why my Endocrinologist never told me 20 yrs ago when Dominant thyroid nodule biopsy times 2 neg so I forgo any further testing !
Childhood radiation survivors should be genetic tests like GWAS I should have had NGS and other specialized tests but they did not care!Finding a good primary care doctor I feel is essential especially for female patients. I have a female second yr residency doc who has looked over all my medical records: surgeries, imaging , labs etc and has confirmed my delivery of care was below substandard! I am blessed that she referred me hospice because of a decade of chronic disease not surgical candidate, ER visit , hospitalizations , the chronic pain that causes my blood pressure to critical levels but doesn’t take me out , blood clots ! It is too much for any human to deal with !
I never want to see or hear about another NRI survivor go thru what I did! My catholic faith kept me from doing the worse sin Catholic can do ! -
Hi fellow warriors —
I had my surgery last week to remove one bad parathyroid gland that was over-producing parathyroid hormone (PTH) which demanded more calcium be released in my body. If not corrected it continues to pull calcium out of your bones leading to osteoporosis, potential kidney disease, fatigue, brain fog, bone/joint pain and a whole other load of side effects. I was lucky and only needed the one tiny gland removed. There are four, each the size of a grain of rice, and they are usually positioned behind the thyroid. Right in the zone that was irradiated as an infant. The post surgery difference was ASTOUNDING!! I could barely walk into the hospital because of the stiffness and pain in my hips. Walking out a few hours later I suddenly realized there was NO PAIN or STIFFNESS. My head felt clearer and I felt more energized than I had in months. The symptoms are vague and often attributed to other things like menopause, fibromyalgia, etc. In some people it can also cause anxiety and depression as well. Hyperparathyroidism is diagnosed via blood tests showing the relationship between parathyroid, calcium and vitamin D drawn at the same time. Many of us go undiagnosed for years while the silent damage continues. For most patients these symptoms stop once the bad gland(s) is removed and the body returns to a normal balance. The surgery was outpatient, short and minimally invasive with a little incision (mine is maybe 1 1/2") at the base of the neck. I was never in pain post-op and grateful that I was inspired to unravel the mystery of my calcium levels rising for 14 years by reading comments about parathyroids here. If a blood test showing your calcium or parathyroid levels are abnormal, discuss this possibility with your doctor or endocrinologist. Thanks for your support and good wishes. I'm sending the same back to you along with my gratitude.💖 💖 Bonni
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Quick question: Is anyone familiar with non-medical “cure” for Hashimotos /Hypothyroidusm? A 60 year old friend was just diagnosed and says she is going to change her diet to fix it. Since I only know about my dysfunctional thyroid issues due to infant radiation, I can’t imagine diet can fix it. Thoughts?
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PastorMickle I'm only aware of Hashimotos disease in passing but know when you have an underactive thyroid then you need to take thyroid hormone to keep your levels up. Here's a Google summary which may help you understand it better:
No, diet alone cannot reverse Hashimoto's thyroiditis, as it's an autoimmune condition requiring lifelong medication for hormone levels, but specific diets (like gluten-free, AIP, or Paleo) and nutrient-rich eating can significantly help manage symptoms, lower antibodies, and reduce inflammation by addressing food sensitivities and gut health. A balanced, anti-inflammatory diet focusing on whole foods and avoiding triggers like gluten, dairy, sugar, and processed items is key, alongside lifestyle changes.
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I agree with @bonnibakes reply to your original post, but can certainly understand and sympathize with your friend's longing to address her problems with a non-medical strategy. Skepticism about pharmaceutical treatments is, I think, warranted because of the profit-making pressure—a symptom of our system—on those who produce drugs. The industry does its best to capitalize on our propensity to put hope in magic-pill solutions and to trust those who offer them.
Surely, the foods one chooses to eat have a significant effect on one's health, as does stress management and lifestyle but this is a case, I believe, that demands a pharmacological intervention, along with regular monitoring to insure that your friend's thyroid hormone replacement level is optimal.
On another matter, would you be willing to share a bit more about what you know of your own infant-radiation treatment? How did you come to know that it had been done to you? How did you learn that it had created a subsequent health problem for you later in life? How was it addressed? Have you had any diagnosed instances of cancer in the area of your neck, chest, mouth in later life?
In any event, thank you for your post, as well as for your heartfelt concern for your friend. I'm sure I, as well as every other participant in this particular forum, wish her well. 🙏🏻
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I can’t remember if I messaged this about radiation oncologist I had seen couple yrs ago after referral by my oncologist for suspected B cell NHL due to R humerus bone biopsy which I awoke from
So only cortical bone small fragments retrieved but showed multiple cancer markers atypical suspicious B Cell NHL and report stated rebiopsy w flow cytometry for confirmed type Lymphoma but 2 oncologist I saw both refused due to PET showed no signs in humerus and my primary care kept wanting me to see one after another oncologist ! I also was told after PET and orthopedics consult w MRI w contrast I had Midshaft fibula osseous lesion he stated it was Mets and needed cut out ASAP but my referral was denied by UF Shands! That was 2022 and I am sadly still living !
but the radiation oncologist oncologist when I asked if all my symptoms were from childhood radiation it took month for nurse to get back “ Dr Anderson was shocked that this was still being used after 1930’s as he believed that is when they stopped using this damaging radiation on children “ Yes your symptoms are contributing factor to your childhood radiation esp where you have nasal septum thinning and non healing R nostril sore since your teens “Now I know why no oncologist care to take on pts like us!
I amStill trying to find compensation for NRI survivors but the many Congress I contacted none have returned any response!
I lost 5 inch height never dx w scoliosis in my younger years but have mod scoliosis thoracic spine and reveres lordosis cervical spine ! With Metabolic Liver disease fibrosis 2 , aorta w back heart damage but not surgical candidate if heart issues arrive!
i elected hospice ! I am done w medical docs ! -
I also had dominant thyroid nodule back 20 yrs ago when Endocrinologists asked if I had medical radiation as child ! Why did she not tell me ! Yrs of thyroid bxs neg do I stopped all thyroid meds and biopsies which probably contributed to my metabolic issues ! It took me this long to find it have a ENT confirm it then expensive dental implants !
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I believe we need to share as much info about symptoms when they started as I can only imagine the pts suffering today not knowing they had radiation rods using non standardized doses ! My sister had the same procedure but not affected! I have had cluster vascular headaches in my 30’s ! A life time of sickness and only wanting to work be productive citizen as RN ! But I had to go SSDI in 2010 in my 50’s due to vascular headaches , fatigue worsen , weakness . Then heart attack , PE , endless cycle of trying to function raise family be a wife ! Then to find out 2025 ! What a joke my life has been !
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