Really long term effects of cobalt radiation?

pappy113051 said:

long term effects of cobalt radiation
Had full series (33) of cobalt treatments in 1969 at the age of 18 for cancer of the lymph nodes in my neck (Hodgkins). Survived after being given 30% chance of coming thru. Never regretted it.

Did not have head cold for 15 years after, had two healthy sons.

Began having carotid problems in my early forties, followed by heart issues, cysts, paralyzed vocal cord, sinus issues, loss of auto swallow reflex, dry mouth, tooth decay in last 3 years. Now suffering from Benign Positional Vertigo.

Have little luck getting answers from doctors as to whether cause was cobalt treatment. Surgeons who did carotids (twice on left, once on right) did tell me tissue was like shoe leather and normal 1-1/2 hour operations stretched out to 4 as they had hard time separating carotid from tissue and blamed it on cobalt. Also was told sinus issues were a side effect of cobalt.Now suffer severe dry mouth. Still happy to be alive and have no regrets on original treatment. Sixty years of age now. Just wish someone could give me an outlook on what to expect in the next few years.

I was told by radiology department that shortly after I was treated that radiation levels used were drastically reduced. I am glad in a way to know that I may have helped them come to that conclusion.

Lost most of my taste after treatment and it caused me to appreciate garlic as it was only taste I could sense for six months!

Keep the faith,

Mike

ladyahni said:

long term effects of cobalt radiation
I found this site today while trying to research long term effects of cobalt radiation. It was interesting to read the posts. I would like to share my Mom's story. She had Hodgkins Disease in 1954, at the age of 25, while she was pregnant with me. (I am fine.) Shortly after I was born, she had cobalt radiation treatments in a hospital in Amarillo Texas. They told her she would have scar tissue on her lung - her tumor was between her heart & lung, and one wrapped around her windpipe and close to the voicebox. They told her she wouldn't be able to do a lot of physical activity. She took up gardening, and never did use the scar tissue as a reason not to do anything. When we moved to colorado in 1961, we often went hiking and camping in the mountains in this beautiful part of the world. She always got tired faster than the rest of us, had to take a lot of breaks, but never gave up - went wherever we did. She said that after her treatments, it hurt a little bit when she was doing physically stuff, but not to bad, and she just kept going! About 4 years ago, she started having problems with her breathing and heart. After lots of testing, and finally collapsing, she was put on oxygen 24/7, and told she would have to have a heart valve replaced someday. That someday came about 2 years ago. About the same time she developed severe GERD, and has problems swalling. About 8 months after her heart surgery, she had what was left of her thyroid removed. About 6 months after that, she had to have a pacemaker put in. She turned 83 in march of this year. That is 58 years after her cobalt treatments. She is slowly getting worse, but is so thankful for every day God gives her. We believe it was truely a miracle, a gift from God. She has lived to see 2 children grow up, 2 grandchildren grow up, 5 great grandchildren either grown or growing up, and 2 great, great grandchildren that get to come visit her. She makes the most of every day, doesn't complain, and we laugh at the irony that what saved her life 58 years ago is slowly taking it now. She wouldn't change her decisions - she has had a wonderful life. In feb. of this year, her grandaughter was diagnosed with Hodgkins Disease, in the same place as mom's. Pretty amazing. her grandaughter is 44, and we are very optimistic about her survival. She has 2 chemo treatments left, and then radiation in August.
I hope that this is encouraging to some facing life after radiation. Thanks for letting me share our story!
Best wishes to you all!

clt1234 said:

coblt radiation long term survior
I am a rather young survior, i had nuroblastoma, in my adrinal gland at a year old i am now at the age of 47 years old. i recieved cobolt radiation as a cure for my cancer, my surviors rate was so low that i was not expected to live past the age of 5. these are my side affects, i have skin on the ratiation site, that will not strech, so i am about 3 inches slimmer on one side, i have dwarft ribs on my left side, a twisted rib cage, which has lead to me having asthma. and a curved spine. i have a lot of feet leg, and back problems, and have one leg that is shorter then the other, resulting in me having to wear a lift.I also have a learning disability, and the inability to have children becasue of the twisting of my body, i was told that in the 60s they did not shield the body as well and that i had some pretty good burns, i have never been able to find any doctor able to tell me what to expect out of my body and mind in the future, they also found that i have a heart valve problem, they think is also related. i am glad and proud to be here but would like to know why there are no long term studies on surviorship. there needs to be i see small children being treated and it makes you wonder what there future will be like after treatment.

I also am a cobalt radiation cancer survivor.  I was diagnosed with neuroblastoma in 1955 and had a left nephrectomy.  I had to have spinal surgery in 1972 and 1996 due to curvature.  The bones in my lower spine only grew to aboutthe size of a 9 year old.  The skin on my left side, around my waist area, has no elasticity and my waist is considereably smaller on that side.  While having surgery in 2009, the doctors asked my family if I had been wearing a corsette!!!  LOL  I had to have my stomach removed due to high grade dysplasia as well as numerous problems with small bowel and colon.  Right now I have TPN for nutrition, but am hoping to gradually be weaned off of it.  Most of my issues center around the area where I received the cobalt, waist area.  At the time I received treatment, no protection of other body areas was used.  I will be 60 this year, so I am very thankful for the treatment that saved my life.  I would have died without it.  I too am surprised that no studies have been done on the long-term effects of cobalt.  No one has ever asked me what my current medical status is.  There doesn't seem to be any interest.  I don't think records from back then were very detailed, and I am sure there is no data base with our names in it.  I've also had 1/2 of my thyroid removed but taking a daily synthroid pill is an easy fix for that.  Unfortunately, my digestive issues haven't been so easily taken care of.  I think I will post a facebook page for Cobalt Radiation survivors and see if anyone joins.

cathyp said:

LT Effects
Hi Mike,

See my post from May 4, 2012 right before your post. Hopefully you can find someone close to you who can manage your LT Effects.
Best wishes,
Cathy

Thank you for informing me about pediatric/adult long-term follow-up clinics. I have never heard of this and will look into it for help.

 When I was 7 years old (1977) I had ganglionuromablastoma and had cobalt treatments following the removal of most of the tumor.  In 1989 I was released from Vanderbilt's care.  The radiation I had when I was 7 was targeted around my spine, right lung, ovary, and esophagus.  The doctors even told my parents I would never be able to conceive a child due to the radiation destroying the eggs and my uterus being targeted with the radiation as well.   (I now have 2 healthy beautiful daughters ages 16 and 12 )

 I am currently 43 and have had minor issues during my adult life but never gave any thought to it being possibly related to the strong childhood radiation.  I went to a gastroenterologist today and he wants to do an esophagogastroduodenoscopy because I have issues of food getting lodged in my lower esophagus daily.  It will go down but is painful and quite scary.  This has been going on for a year and I finally decided to check it out. When I told him about my past cancer history and radiation he paused and said we really need to schedule this soon.  I am a little scared.

 Do you have any thoughts or could direct me to a medical website that would offer me some advice? 

 I just joined this group and could not believe it when I saw that other people had the same type of very rare cancer that I had in the 70's.  I truly thought I was the only one with it and to find out there are more is nice to know especially survivors. 

Thanks so much for your help!  Blessings to all who read my post.

allwaysjudee said:

I received cobalt radiation
I received cobalt radiation treatments 42 years ago, at the age of 16, for treatment of Hodgkins Disease. Cured me, and offered me a good life, but now the problems are arising. Neck and upper thoracis muscles are deteriorating, and I'm told that some neural cells may be involved too, as I develop problems lower down.

At first the doctors didn't want to believe it was the radiation treatments, but finally they decided it couldn't be anything lese. The muscular decay is very visibly in the area of treatment.

I have learned to accept this, but it was very frustrating during those 4 to 5 years of worsening symptoms, to be sent from specialist to specialist and no one knowing what it was. But I look at it this way - we are the first generation of cancer survivors to live this long. Such statistics couldn't be known before, because people didn't live as long before having relapses, or other cancers, etc.

It is my hope that whatever suffering I experience now can serve as a kind of indicator to current treatment methods, an incentive to look for treatments that will cure without such strong and painful effects so many years down the line.

But hey, as I always say, if it weren't for the treatments, i wouldn't be here to complain about it.

ps - sorry for the typos

I am a male breast cancer survivor (32 years this month!) who received 23 cobalt radiation treatments post-surgery.   In early February, 2015, I was diagnosed with a paralyzed left vocal cord, which is now recognized as a long term side effect of cobalt radiation.    I sought the opinion of two ENTs and opted for surgery to place an implant into the left vocal cord and to do an arrytenoid adduction (moving the left vocal cord more toward the center).   Both procedures were successful; however, the amount of scar tissue present did not allow for movement of the cord to go as far a the surgeon preferred.

I have gone from having no voice and gasping for air to barely even whisper to a strong voice and no gasping for air.  I am delighted that this procedure could be done to restore my voice. 

You are correct that we have survived long enough to be testament to these side effects, and  there are improved treatments out there already.  Breast cancer patients today do not receive cobalt radiation................... sometimes I get down about the way the radiation has affected my body (I was also diagnosed with coronary artery disease and experienced a failed bypass operation due to the scarring to my heart vessels), but if I had not lived this long, I would not know these things could happen. 

We have to count our blessings in the midst of our trials.  I have delivered my daughter, watched her become a physician, retired from a rewarding career and been married to my wife for 35 years.   Life has been good to me and I am grateful that we can all connect here to share our stories.

Blessings to you all.

Hello everyone. I was first diagnosed in 1981 with stage 2a HD and received COBALT radiation. At that time, my spleen was removed for staging purposes. I was in remission for almost two years and was rediagnosed 2 weeks after I graduated high school with stage 2b. I was treated with ten months of MOPP chemotherapy, and have been cancer-free since 1984. I have three children now and I am a grandmother. 

In the last few years, I've experienced more asthmatic type of symptoms and am very slow to recovery, even with hospitalization. It also seems that if I'm even close to anyone who is sick, it affects me and I get sick. 

My children are healthy, except both my girls have thyroid issues. 

Has anyone else gotten any of these type of symptoms with lung disorders, or had children that are experiencing thyroid issues?

Thanks, everyone. Glad to know we are not alone in our survival. 

joroja said:

36 YEAR SURVIVOR HODGKINS DISEASE SEEING EFFECTS
In some ways it is wonderful to be able to see that there are others experiencing what I have been experiencing for some time now. I was treated for Stage 1 Hodgkins with cobalt radiation 36 years ago. With the exception of emotional effects from the disease I hadn't any secondary problems until 13 years ago when it was thought that I had thyroid cancer, which I did not but had a thyroidectomy due to the increased risk from radiation. Then 5 years ago I developed Stage 2 Breast Cancer. Treated with chemotherapy and am now cancer free. Each day, as I'm sure most of you know, is a blessing but we have to always live with the fear(which I TRY not do do) of a reoccurrence or new type of cancer. Every test we take turns out to be a rollercoaster ride of emotions because I think the doctors tend to be overly sensitive to the fact that we are cancer survivors. I have just recently learned that I too have not only mitral valve prolapse but aortic stenosis and leakage which is assumed to be from the radiation therapy. I have been told that I do not need valve replacement at this present time but we are watching things very carefully. I too have done my research for the possible future at the Cleveland Clinic. I read the other person's blog about Late Term Effects Clinics and I will have to look into my area (south Florida) to see if there is any such thing. Presently most of my doctors work independent of one another and that can be quite frustrating. I pray that all of us will continue to live a long and at best productive life. I have a 13 year old son that I intend to see grow into a fine "middle aged" man.

I am looking for a doctor or research group that has answers and solutions for the pain my sister is experiencing 35 years later - she also lives in South Florida

allwaysjudee said:

I received cobalt radiation
I received cobalt radiation treatments 42 years ago, at the age of 16, for treatment of Hodgkins Disease. Cured me, and offered me a good life, but now the problems are arising. Neck and upper thoracis muscles are deteriorating, and I'm told that some neural cells may be involved too, as I develop problems lower down.

At first the doctors didn't want to believe it was the radiation treatments, but finally they decided it couldn't be anything lese. The muscular decay is very visibly in the area of treatment.

I have learned to accept this, but it was very frustrating during those 4 to 5 years of worsening symptoms, to be sent from specialist to specialist and no one knowing what it was. But I look at it this way - we are the first generation of cancer survivors to live this long. Such statistics couldn't be known before, because people didn't live as long before having relapses, or other cancers, etc.

It is my hope that whatever suffering I experience now can serve as a kind of indicator to current treatment methods, an incentive to look for treatments that will cure without such strong and painful effects so many years down the line.

But hey, as I always say, if it weren't for the treatments, i wouldn't be here to complain about it.

ps - sorry for the typos

Is there a doctor or a research group that I can called or contant for my sister? She is in so much pain and has been a survivor for 35 yrs but the steroids they are giving her are taking their toll.

Thank you in advance

Why aren't people posting any info that isn't any later than 2012? There are no post from people living with long term side effects in 2021? I'm 49 years out, now dealing with heart issues. Moderate aortic stenosis. Slight heart valve regurgitation. Now I known that could  be signs of radiation heart. I had chemo twice. Once at age 22 for reaccurance from radiation in 1972, Hodgkin's lymphoma, age 12. Scary at age 12 in 1972. I don't think doctors had great hope of me living this long. I didn't know this at at age 12, I don't think the doctor about these facts. I know we were test monkey's. Chemobrain didn't exist until recently, finally admitted to by the medical community. Age 47 brought nonhodgkins lymphoma. More chemo at age 47. Then brain issues happened, I of course was told I was crazy. Approximatly 4 years later, renal cancer diagnosis, only found after getting bacterial sepsis from a colonoscopy. Pure luck to find the renal cancer. The ICU wouldn't except my transfer until a CT scan was done. Then a partial nephrectomy surgery on my left kidney. Basal cell cancer on the back of my neck. Minor surgery. I'm just wondering how many cardiologists actually know about radiation heart? Has anyone gone through heart surgery, that was done incorrectly, for lack of knowledge about radiation heart? My understanding is that if the heart surgeon doesn't know about radiation heart, the procedure should be treated in a totally different manner. If not another heart surgery may have to be done. Unknown techniques that have to be done. They now account for possible new radiation heart issues that could take place in the future. The first surgery can take care of future issues, may occur later, if the doctors are keyed into a comprihensive study that is available explaining radiation heart surgeries and a better prognosis for the patients, can be done. Right now I'm in early stage testing. The 30 day heart monitor. Forgive me for spelling errors, missing words, poor grammar and sentence structure, I have chemobrain.

Hello. Last time I posted was 12 years ago. Since then my treated leg has lost mass and I have very little remaining of my femoris medialis. I have a very sore MCL and had it checked by a surgeon and MRI in October. It is a grade 3 sprain and I immediately started physical therapy. The therapy surprised me how weak my leg has become. My leg is now approximately half the size of my non-treated leg.the blood flow to the limb was reduced by the radiation all those years ago, and as I age this seems to exacerbate the blood flow. Also, there is little to no chance of an erection, even with the shot. Little blue pill does absolutely nothing.