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Radiation in Infancy

2manyrads
Posts: 16
Joined: May 2010

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. After surgery, radiation and chemo treatments for four cancers (leukemia, thyroid, lymphoma, prostate), three open-heart operations, four years under Hospice care, and twenty-six years after being told I had six months to live, I believe that one of the reasons I am still alive is to tell this story so we can learn to use medical radiation with greater caution. I am firmly convinced that the proper use of radiation saves many more lives than it threatens—I have benefited from diagnostic and interventional radiation, without which I would not have survived the very diseases that excess radiation caused. Please contact me at 2manyrads@gmail.com

Thanks
Ron

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Ron,

Great insight as I'm so very aware of the side-affects from radiation. The news about radiation from just simply tests as with Cat-scans are huge. I'm always the person who is trying to help myself and will do anything to help, especially with less radiation.

I completed chemo and 33 sessions of radiation last July. Now followup was to have included cat-scans and blood work every 3 months for 2 years. After my initial cat-scan and having a concerned chat with my oncologist last December, he and I agreed to do Cat-scan every 6 months. As long as my tumor number he pulls from my blood work is where it should be we won't do the scan, but every 6 months. Thusfar, all is well. I know MRIs don't have the radiation, but with uterine cancer which I have, insurance won't cover MRIs unless I first do the CAT-scan...boohoo!

I have a good friend who has scans and she approached her doc about the radiation. His response -- well you made it thru all the toxic drugs with chemo and just adding radiation to your mix from scans isn't a big deal. His thoughts...be glad you're alive and what's more radiation!!! Wow...I about fell over when heard that, but just glad it's not my doctor.

You should be so happy to be alive as you're been thru the ringer and still kicking....GREAT NEWS! God must have a mission for you so you go out and spread the word on the affects of all the treatments, etc. My mission is to help others who have cancer and just starting to get more into volunteer work. Some day I'm hoping to find a job doing this type setup and making a living. Right now I've got 2 different setups.

Best to you...
Jan

2manyrads
Posts: 16
Joined: May 2010

Jan,

Thanks for sharing your passage through this maze of treatments--which ones are lifesavers and which ones can threaten the very life that was saved. I, too, am extremely careful about having CAT scans, though I have been in the emergency room after falling and breaking my hip and pleading with the CAT tech to put lead protection on my chest. He finally complied, but grumbled about how it would mess up his scan (it didn't).

Recently, my cardiologist arranged for me to have an MRA instead of a CAT scan because of my concern with additional radiation--a concern she shares as well. However, she had to fight with Medicare and my secondary to substitute the MRA. Maybe your oncologist can fight your insurance battle for you--the medical professionals have so much more clout than the patients who are insured.

I do believe that the purpose of our lives is to be of service in whatever way we can. I hope writing about the dangers of unnecessary medical radiation, especially for children, will help some parents question whether a CAT scan is necessary or just "standard procedure" (usually to provide malpractice protection). Although these cancers from radiation do not show up until decades later, we need to be our own and our children's medical advocates.

Best,
Ron

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I like the idea of placing "lead protection on the chest" during scans. Never even occurred to me that we can protect some areas. I've got uterine and they generally just radiate the pelvic area and wow do I have issues with bowels, etc. Currently having pains in the hip/buttocks and confirmed by oncol that it's not cancer. Trying to convince someone to do MRI is like fighting city hall. Have appts with both oncol this month and look foward to the struggle to convince. Both are great and agree they have more clout with insurance than I do. One thing I've learned with uterine, they always approved cat scans. ONly way approve MRIs is if had first the cat and had issues, then pay for MRI. Crazy!!

What affects do you find after radiation on our bones and joints? I'm thinkng it causes dryness so bones and muscles and joints are less moist, therefore, don't function well and cause pain as in my case.

Hang in there and great chatting here.... you're a miracle so go out and spread the word about after affects from what you've been thru...
Jan

2manyrads
Posts: 16
Joined: May 2010

Jan,

I have been diagnosed with suspected bone cancer in one area of my spine, which they say is a "better" location to have it in compared to the ribs where it is almost untreatable. However, I have also had several of my thoracic vertebrae collapse (ouch!), which I think is directly related to the radiation. Four years ago I broke my hip and it has remained painful. I don't know if this has any relationship to the radiation but these days I wonder about it.

Good luck with your oncologists re MRI vs CAT. I am still working with my docs to make them aware of the risks I run with any kind of radiation exposure.

Let me know how you make out.

Ron

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