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

wrwoolley1

https://csn.cancer.org/discussion/comment/1725829#Comment_1725829

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

lzimmer

https://csn.cancer.org/discussion/comment/1725830#Comment_1725830

I am so glad that this group has been helpful. I ALWAYS tell providers about radiation exposure to my thymus. Most recently at my diagnostic mammogram. I am not sure they even register how it might be related to future issues. That being said, I am wishing you a successful surgery.

cathyand80

https://csn.cancer.org/discussion/comment/1725205#Comment_1725205

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 !

cathyand80

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

wrwoolley1

https://csn.cancer.org/discussion/comment/1726163#Comment_1726163

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

wrwoolley1

https://csn.cancer.org/discussion/comment/1726164#Comment_1726164

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.

cathyand80

https://csn.cancer.org/discussion/comment/1726165#Comment_1726165

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 surgery

Patients 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 !