Radiated on purpose as an infant in the 1950's, cancer developed years later
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Hm. Endocrinologist would address broader metabolic and hormonal issues related to organ function, such as thyroid. An ENT would seem like the choice if there were structural swallowing or upper airway or sinus issues and such due to growths. I would suggest asking your GP the reasoning for ENT over Endo. It may be your GP’s prioritization of your symptoms.
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Good luck advocating for yourself. It isn’t always easy but it is evidence of your strength.
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I have seen ent, endocrinologist, rheumatologist and ongoing care with oncologist. It can be a long journey.
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Another difficult story to read, @lpammysnowball. I'd like to give the medical profession a pass on the use of radiation. I'd like to believe they didn't have a clue about the dangers it posed, especially when treating preschoolers in the 1950s. I'd like to believe we weren't just being used as guinea pigs for experimentation. In the early 1900s, however, there was considerable evidence that radioactivity posed threats to human health. Yet, still today, physicians are routinely recommending tests, such as nuclear stress tests, that require increasingly appalling amounts of radioactivity while claiming they only use "small amounts" that are "relatively safe" and "worth the risk." Google "nuclear stress test radiation risk," for example, and you can read all day. My continual indignation about this topic, however, does nothing to solve the problems you've already incurred, nor the stress and sadness I assume it has caused. Illnesses have an immeasurable ripple effect on loved ones. Thanks so much for sharing your story, as well as for your interest in gaining awareness of this issue. I wish you and your husband the best. Be strong as you advocate for his health! Email, if you wish: wrwoolley at gmail.com.
@kodsgy I'm afraid I can't definitively lay the problems you mentioned at the feet of the medical professionals who prescribed and/or administered your thymus radiation, but I'd absolutely check in with an endocrinologist asap. I do know the thyroid regulates metabolism, so your other issues might well be in play if something is amiss with your thyroid.
I sent you an email. Short answer for this forum: A GP should be willing, I think, and able to request a blood test that indicates thyroid function, as well as an ultrasound, which should show the presence of a tumor. I had this done 45 years ago, but I believe these measures are still appropriate. See: https://www.mayoclinic.org/diseases-conditions/thyroid-cancer/diagnosis-treatment/drc-20354167
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I was radiated in 1957 near Detroit. I had 2 surgeries in my 20s. As I was told I had tumor producing glands. Now in my 60s due to kidney cancer I had to have many and still are survalence scans. Now I'm growing nodules on a parathyroid glad. I wish there were research on us survivors. I guess what's the point they now know that was a disaster medically!
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So sorry that all this has/is happening to you. I have had several tumors and such also from radiation as a child. Jemije
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Hello, hope you are able to see this, I just came across your message.
I have scoliosis, osteoporosis, in my early 50's plus osteopenia in my neck. I was diagnosed in 2008 with severe degenerative disc disease, I have had 3 cervical disc fusions surgeries from herniated discs, in 2000, 2005 and 2007 plus a Foraminotomy in 2003 for bone spurs in my neck. I have another severe cervical herniated disc, have an appointment with the surgeon next week. I have hypothyroidism and have had 2 parathyroid adenomas removed 10 years apart. Those two diseases or conditions are known to be caused from the radiation I received at 6 months old in 1955. Also had breast cancer in 2005
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hello. So sorry to hear your story. It is very similar to my own. I am now 75. We are health “twins”. My scoliosis and osteoporosis have continued to advance. I have been referred back to neurosurgery for further degeneration of my spine and fractures around the area of my earlier laminectomy and fusion in my lumbar spine. I am not pursuing any further spine surgeries because I feel they do not solve problems and I end up with problems in other parts of my body and body systems in response to the surgery. I had a thyroid adenoma and thyroidectomy for that. I also had breast cancer and am currently monitored for recurrence. My oncologist felt the radiation was a risk factor in my case. I feel medical science has far to go in understanding how all our systems work together. As a retired nurse practitioner, I have come to believe medicine viewed problems as a mechanic would-“problem with your fan belt? We will fix you right up” without understanding of how the systems interact and what the effects will be as the trajectory of our lives plays out. This happened with our radiation treatment. I know with my breast cancer and mastectomy, I would NEVER have had the pediculed tram flap reconstruction if I had understood what that might mean for my bowel function and my spine etc. ah well, hindsight and all. I wish you peace and some freedom from too much pain. You are not alone. Jenelle
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Hi, Jodi. Thanks for joining the discussion on what, in my opinion, was a terribly egregious mistake on the part of the medical community. In many cases, that mistake proved fatal. I'm curious as to whether you know why you were irradiated at the age of 6 months. What was the medical justification for that procedure? And did it even accomplish what doctors intended? I was very fortunate that my mother told me, when I was young, that my thymus had been radiated as an infant. One day, when I was 24 years old, I was watching the "60 Minutes" TV show and they did a segment on how that misguided procedure was causing an alarming number of thyroid cancer cases. They recommended getting checked by a physician, which I did right away, and a golfball-sized tumor on my thyroid was found and immediately removed. After joining this forum, I realized the problems haven't ended there. People in later life, like me (71), are being diagnosed with cancers and other issues in the neck, mouth and chest area. As a result, I'm being very vigilant about getting checked by a dermatologist and an ENT on an annual basis. In any event, I can only wish you wellness as you do your best to manage your health. Sending positivity your way!
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Thanks, Jenelle, for your supportive comment on JodiC55's recent post. Just when I think things are finally winding down on the original post, someone else comes along with another unfortunate report. I continue trying to managing my anger and frustration, which bubbles up every time I see the thumbnail testimony of another victim of the misguided application of irradiation on infants decades ago. To this day, I'm highly reluctant to consent to any scans that require radioactivity in any form. I strongly suspect physicians today, like they did when we were babes, tell patients the levels of radiation in diagnostic tests are "completely safe." Also, I love, as well as completely agree with, your perspective as a former nurse practitioner. I keep wondering if, someday, a documentary will present the flawed reasoning and dangers behind the use of radiation in medical care.
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Hello, thank you for your reply, and for your concern.sorry that the story is lengthy. I recall in my adult years, my mom reproducing the sound of my breathing, specially when she had been drinking. I know it caused a lot of stress for her and my dad. My mom told me she would take me outside, in the middle of the night, trying to get air in my lungs. I was her 6th child, (she had 10 more after me), I imagine she was trying hard not to disturb my siblings. Eventually, after many X-rays at 2 separate hospitals, I was admitted to Children's Hospital, where a blockage was discovered. My mom was told I had aspirated milk, that had turned into a solid chunk, which lodged in my bronchial tubes. A bronchial scope procedure was done to break up the mass, and I was breathing normally afterwards. When I was 19 years old I received a call from a hospital, informing me to make an appointment at local cancer hospital. They checked my throat for thyroid cancer, said that I was given too much radiation as an infant.I was to be checked every year, but I didn't follow through. I was diagnosed with hypothyroidism, which I wouldn't wish on anyone. Trying to get the correct thyroid medication, and dosage is beyond ridiculous. They are afraid to give high enough milligrams, endocrinologist are clueless, so we suffer with symptoms that can could give us some quality of a life. The same with pain medications, I was going fine with Pain Management until a few months ago. The physician decided to take all of her patients off long lasting medications, and the pain is excruciating. I can no longer do housework, for more than an hour a day, because my whole spine is destroyed. This is all due osteoporosis, and degenerative disc disease. Having two parathyroid adenomas, which make your skeleton weak, taking calcium out of your bones. I try to inform anyone who will listen about Hyperparathyroidism, because so many do not know about it, and many, many physicians are CLUELESS. I am finished with the ranting, for now. Have a great day.
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Rants like yours seem fully justified, Jodi. It's been a century, at least, since doctors began tapping into radiation for a variety medical reasons, and they still don't know exactly how the fallout is adversely affecting their patients. To call their historical practices "cavalier" is being kind. Continue to be vigilant in your self-advocacy, and I hope you have a circle of friends who are steady in their support! —Bill
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