20+ Year Survivor Would Like to Hear From Other Long Term Survivors

I found this site today, trying to research long term effects of cobalt radiation treatments for Hodgkins Disease. It was interesting to read all the posts. I would like to share a story with you. My mother had Hodgkins Disease in 1954, when she was 25 years old, and pregnant with me. Very shortly after I was born, (and I'm fine) Mom had cobalt radiation treatments in Amarillo Texas. Cobalt treatments were still very new then, and the prognosis for Hodgkins was very bad. The doctor that did the radiation treatments told Mom that there would be scar tissue on the lungs, that she would not be able to be very active; no hiking, running, etc. They also told her that she would live, at most, 5 years. Her primary doc told her to get a hobby, she chose gardening. In 1961, our family moved to a small community in Western Colorado. This is a beautiful country - lots of opportunities to hike, camp, lots of things. And Mom did it all! She said that for a long time her lungs hurt when she did any physical activitity, but she just kept going. She always got tired faster than anyone else, had to take more breaks, but never gave up. About 4 years ago, Mom started having some troubles with her breathing and heart. Since we live in a small community, there are not a lot of resources. The cardiologist said it was her lungs, the pulmonologist said it was her heart. After going round and round for a while, Mom collapsed. At the hospital, more tests were run, including the ones that showed the valve problem with her heart. They put her on oxygen 24/7 and told her that someday she would have to have her valve replaced. Sure enough, just about 2 years ago, she did have a heart valve replaced. And, there was scar tissue at the valve. We never thought about all this being the result of the colbalt treatments. About a year after the heart surgery, she had what was left of her thyroid removed. One side of her thyroid had been removed before the radiation treatments. About 6 - 8 months after the thyroid surgery, she had to have a pacemaker put in. Now, just over a year after the pacemaker, Mom is doing pretty good. For those of you doing the math, Mom is 83 years old, and has lived 58 years after the cobalt radiation treatments. She has never had any other cancer. It is an amazing story, overall. They didn't have lead plates to protect any other area in 1954.

In Feb. of this year, Mom's granddaughter was diagnosed with Hodgkins Desease at the age of 44. The disease is almost exactly where Mom's was - a tumor in the upper chest, and one wrapped around her trachea. She is currently receiving chemo therapy and will start radiation in August.

Mom can't do much now, gets very frustrated because she can't take care of her yard! She is getting worse, little by little. But she makes the most of everyday, has a great attitude and is thankful for the time God has given her on this earth. She lived to see her 2 children grow up, her 2  grandchildren grow up, 5 great grandchildren grown, or growing up, and 2 great, great grandchildren who get to come visit her! We have been so blessed, and we believe God worked a miracle through medical science. 58 years of life.

I hope that this story is an encouragment to people facing life after radiation. Thank you for letting me share our story.

Sharla

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Dennis G.
Pastor Connect Groups
Australia for Christ Fellowship

On Jul 19, 2012 12:11 AM ladyahni wrote:

I found this site today, trying to research long term effects of cobalt radiation treatments for Hodgkins Disease. It was interesting to read all the posts. I would like to share a story with you. My mother had Hodgkins Disease in 1954, when she was 25 years old, and pregnant with me. Very shortly after I was born, (and I'm fine) Mom had cobalt radiation treatments in Amarillo Texas. Cobalt treatments were still very new then, and the prognosis for Hodgkins was very bad. The doctor that did the radiation treatments told Mom that there would be scar tissue on the lungs, that she would not be able to be very active; no hiking, running, etc. They also told her that she would live, at most, 5 years. Her primary doc told her to get a hobby, she chose gardening. In 1961, our family moved to a small community in Western Colorado. This is a beautiful country - lots of opportunities to hike, camp, lots of things. And Mom did it all! She said that for a long time her lungs hurt when she did any physical activitity, but she just kept going. She always got tired faster than anyone else, had to take more breaks, but never gave up. About 4 years ago, Mom started having some troubles with her breathing and heart. Since we live in a small community, there are not a lot of resources. The cardiologist said it was her lungs, the pulmonologist said it was her heart. After going round and round for a while, Mom collapsed. At the hospital, more tests were run, including the ones that showed the valve problem with her heart. They put her on oxygen 24/7 and told her that someday she would have to have her valve replaced. Sure enough, just about 2 years ago, she did have a heart valve replaced. And, there was scar tissue at the valve. We never thought about all this being the result of the colbalt treatments. About a year after the heart surgery, she had what was left of her thyroid removed. One side of her thyroid had been removed before the radiation treatments. About 6 - 8 months after the thyroid surgery, she had to have a pacemaker put in. Now, just over a year after the pacemaker, Mom is doing pretty good. For those of you doing the math, Mom is 83 years old, and has lived 58 years after the cobalt radiation treatments. She has never had any other cancer. It is an amazing story, overall. They didn't have lead plates to protect any other area in 1954.

In Feb. of this year, Mom's granddaughter was diagnosed with Hodgkins Desease at the age of 44. The disease is almost exactly where Mom's was - a tumor in the upper chest, and one wrapped around her trachea. She is currently receiving chemo therapy and will start radiation in August.

Mom can't do much now, gets very frustrated because she can't take care of her yard! She is getting worse, little by little. But she makes the most of everyday, has a great attitude and is thankful for the time God has given her on this earth. She lived to see her 2 children grow up, her 2  grandchildren grow up, 5 great grandchildren grown, or growing up, and 2 great, great grandchildren who get to come visit her! We have been so blessed, and we believe God worked a miracle through medical science. 58 years of life.

I hope that this story is an encouragment to people facing life after radiation. Thank you for letting me share our story.

Sharla

Wow,...1954 treatment and your mom is alive and ok,...this should be on TV for other people who had cancer to see this. Thank You very much. scott

On Jul 19, 2012 11:46 PM dennis63 wrote:

Wow.  So very encouraging and inspirational!  I'm a Yank transplanted in Australia doing pastoral work  had the Radiation and chemo in 1980-81 when I was 16-18 years old.   The Dr's told my family that they shouldn't expect me to live  to  the age of 30. Here I am at 49 enjoying God and the gift of life He's given. Though I have some of the nagging side effects that go with it all  I agree with you!   God worked a miracle through medical science for me too!!  

Thanks for your post

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Dennis G.
Pastor Connect Groups
Australia for Christ Fellowship

Great to hear you are fine and had lymphoma just once.  I had 3 times and am fine now,..very active, can run and do all I would have done anyway in life, 49 also, next month. Thanks Scott

I'm a 30 year survivor - have had swallowing problems lots of acid reflux.  Have had the usual tests.  I figure it's from the radiation. 80 rads.  I just had a chest xray and they are ordering a CAT SCAN. It could be nothing, or the other shoe.

These kinds of problems are NOT uncommon.  I have also had these same issues.  Radiation to the chest and upper mantle is believed to contribute to, if not cause these problems.  A good gastro guy should be able to help you with this.  A basic upper endoscopy can reveal a lot and help determine an appropriate treatment.  It's discouraging, but worth getting looked at.  If you aren't connected with a good survivorship program, try to find one.  It's a great relief to deal with professionals who understand the long-term effects of cancer and the radiation therapies.

Hi All

I develeoped non hodgekins lymphoma at age ten, 45 years ago. Up until recently I enjoyed a healthy lifestyle but am feeling the effect now. I had extensive radio therap on chest and neck area leaving me with severe "pidgeon chest" appearance. In recent years I have undergone open heart surgery and also have a pacemaker fitted. I suffer bouts of extreme tiredness and shortness of breath. My cardioligist explained that due to the radiation the heart wall and some arterys have become brittle this also applies to the lung explaining the shortness off breath. I have had my asophegus stretched with a balloon type object to help with digestion but is still an issue. All in all I am gratefull for the 40 years I have had so far and still mananging to work ten hours a day ( with a struggle) 

On Sep 26, 2012 2:02 AM colinh wrote:

Hi All

I develeoped non hodgekins lymphoma at age ten, 45 years ago. Up until recently I enjoyed a healthy lifestyle but am feeling the effect now. I had extensive radio therap on chest and neck area leaving me with severe "pidgeon chest" appearance. In recent years I have undergone open heart surgery and also have a pacemaker fitted. I suffer bouts of extreme tiredness and shortness of breath. My cardioligist explained that due to the radiation the heart wall and some arterys have become brittle this also applies to the lung explaining the shortness off breath. I have had my asophegus stretched with a balloon type object to help with digestion but is still an issue. All in all I am gratefull for the 40 years I have had so far and still mananging to work ten hours a day ( with a struggle) 

Wow,...so you were treated in 1968 w/ rads and are ok. I was treated 25 years ago w/ rads and feel ok.  When did pacemaker and probs begin ?  When did esophogas need opening ?  scott