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Really long term effects of cobalt radiation?

KM25
Posts: 3
Joined: Dec 2008

Following the surgical removal of a medulla blastoma (base of brain), I received cobalt radiation treatment to kill any remaining errant cells. This happened 40 years ago. Since then, life for me has been fairly "unremarkable". During the past half dozen years however, I have slowly lost control over the coordination of my legs and sense of balance. Conversations with a neurosurgeon and a professor of neurology (UCSF) revealed that the most likely cause may be that adjacent, health neural cells also deteriorate about 40 years after being exposed to radiation.

Anyone have similar or other symptoms after this many years?

Robstar
Posts: 3
Joined: Jul 2009

I was diagnosed with A.L.L at 1 1/2 (1971) remission at 5 and cured at 10 (1980). I received frontal lobe radiation and chemo. SInce age 5 I have had learning disabilities, short term memory, attention issues, comprehension, problems with mathmetics, and concentration. I haven't had any problems coordination though (although I not very athletic though). I haven't found a lot of research of long term cancer survivors. I wish there was more. I know it's important to get you cured and out the door, but it seems once you're 5yrs out..they seem to forget about you.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Please locate a late term effects clinic. While most doctors now have a protocol for children following cancer, only recently have they realized that so many of us, while no longer a child, but were treated at a younger age, are now feeling the effects of what cured us.

I feel confident in my L.E. doc that I will not be forgotten (they actually call me when I don't follow through quick enough with their orders).

Paul E. (Hodgkoid2003)

allwaysjudee
Posts: 1
Joined: Sep 2009

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

janet b
Posts: 1
Joined: Feb 2010

I was very happy to read your entry. I received cobalt radiation 37 years ago @ 17 yrs old for Hodgkins (Mantle & Inverted Y, neck to tailbone). My neck & back muscles are severely "wasted" & atrophied, I look like my back muscles were "scooped out" with an ice cream scoop. Like you say, the muscle decay is very visible. Have you found a doctor that has given you any idea of anything that will help or any treatment?

I have not found any dr. or Orthopedic dr. that will speculate that it is radiation damage. All they'll offer is cortisone shots in the spine "when the pain becomes intolerable". One dr. looked at my back,neck,lower buttock area....shook his head in disbelief.....but told me that I "slouch & don't stand up straight". He was young & he just does not have the education/ training to understand. I wish I COULD stand up straight.

I have had numerous heart problems, stents, & am in congestive heart failure. I had colon cancer about 10 yrs ago, & also a blocked Mesenteric (abdominal) Artery that nearly killed me about 4 yrs. ago (all probably caused by cobalt & MOPP chemo). I am facing aortic/mitral valve replacement & probably heart bypasses very soon (I hope to go to Cleveland Clinic).

What were you told about the "neural cells", if u don't mind me asking. I just can't find any help in the regular medical doctors. I will appreciate any info you can provide.

I have a clue what you have been thru. I appreciate your attitude. I too am thankful to be alive. However, I did not like being used as a 17 year-old guinea pig without my consent. Best regards & thanks, Janet B

joroja
Posts: 2
Joined: Mar 2010

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.

cathymom
Posts: 3
Joined: Mar 2012

I hope you all are still blogging on this site. It would be wonderful if we all lived in the same city and we could have a "Survivors Club Conference"! I'm such a dreamer! Anyway, I've had a lot of the same side effects. My aortic valve was replaced in 2007, my esophagus is shot, osteoarthritis, severe acid reflux, thyroid removed, etc. And it looks like I'm due for breast cancer, considering I was only 13 years old when I was radiated. All this info. on this site is truly frightening, but I'm happy that we can share our experiences. It makes me feel less lonely and validated... that there is a cause to all my health problems...it has a name now. Radiation is truly the "gift" that keeps on giving. On the up side, I have 4 beautiful children, ages 6-14. I hope to be around to see them grow up. Please respond, if y'all(I'm from Atlanta) are still out there. Thanks! -Cathy H.

KM25
Posts: 3
Joined: Dec 2008

I was hopeful after I learned that all of us have our own stem cell "factories" in our brains. After listening to a speaker at a "Brain Tumor Workshop, I was optimistic and many non-neurosurgeon - doctors seemed to have - superficially at least - a similar response.

However, it doesn't look like anything is going to happen soon. MAYBE there are so few of us who have survived 40 years after the tumor. that there isn't much of a "market" to develop this new technology.

I have learned that there is more location, in our bodies, that manufacture adult stem cells - beside in our brain, there are locations in our muscles, in our hearts, and in ??. And in weach location, the stem cells are preset to become what ever cell they are supposed to be.

As for myself, my main focus has been on trying to restore my strenght / stamina and to adapt.

I am so sorry that I have replied sooner. I have my reasons / excuses. I wish you are still doing well.

carol68
Posts: 1
Joined: Oct 2005

In 1969 I was given radiation in the neck and chest area to treat hodgkins disease. I was blessed with many healthy years until 1995 when my throid started to malfunction. This has been easily treated with synthroid. Then in 2002, despite being a non-smoker, I was diagnosed with lung cancer. Part of one lung was removed with no recurrence of cancer thusfar. However I recently have experienced shortness of breath and am bothered more by the heat and humidity. I will see my doctor next month for his assessment. It is amazing how many long term survivors have experienced unanticipated health issues because of radiation. Thankfully new methods of radiation are less risky and more effective, but it makes me wonder what else might surface in my personal health. Best of luck to all cancer survivors!

momyo999
Posts: 1
Joined: Sep 2010

Well, first off, nice to meet you. My daughter was diagnosed with Hodgkins disease in Feb of 1984 when she was 12. She is now 40 years old. Had radiation on her neck where the lump was plus in the area of her speen. Now she has become sick. All this testing and still have not found out why she is ill. Her endocrinologist plus her cancer dr. said it may be due to all this radiation she had. She has also been to The Mayo clinic this year for an enlarged liver. And her list of symptoms goes on; she mentioned like 30 to me. So, I go with ehr this thursday to see her cancer dr. for a meeting. If you want to e-mail her it is: gr8lilfarmgal@yahoo.com. Her name is Theresa. I am her mom shirley. Take care.

HodgkinsSurvivor
Posts: 3
Joined: Mar 2011

So glad I found this website and this info... I follow NCCn guidelines every year but this has never been discussed at least I have info to know what the future may hold... Had rad in 1978 1979 when I was 16. Have LE but doctors are following me close.... I always say the same to my mom who cries every time i have another cancer.... Good Luck

HodgkinsSurvivor
Posts: 3
Joined: Mar 2011

So glad I found this website and this info... I follow NCCn guidelines every year but this has never been discussed at least I have info to know what the future may hold... Had rad in 1978 1979 when I was 16. Have LE but doctors are following me close.... I always say the same to my mom who cries every time i have another cancer.... Good Luck

HodgkinsSurvivor
Posts: 3
Joined: Mar 2011

So glad I found this website and this info... I follow NCCn guidelines every year but this has never been discussed at least I have info to know what the future may hold... Had rad in 1978 1979 when I was 16. Have LE but doctors are following me close.... I always say the same to my mom who cries every time i have another cancer.... Good Luck

wendy_53
Posts: 1
Joined: Sep 2011

Hi, I received cobalt radiation after being operated on for a cerebellum tumor. That was 50 years ago.
I had a pretty normal life, had 2 children (that's a wonder in itself). As I am getting older my muscles, or lack of, are causing me alot of pain. It's frustrating because the only thing they recommend is excercise. My balance is bad, and it's extremely hard to excercise in a normal gym.
I have recently lost a portion of my hearing and started with hearing aids. That's extremely hard to get used to.
I just met with Dr. Freeman,a radiation/oncology expert,. It seems my tumor would have been treated very different at this present time. The docotors today would not even suggest radiation treatments for my kind of tumor. Speaking with Dr. Freeman was very nice, to have someone really unerstand how these symptoms are popping up later in our lives. But at the end of the coversation, the fact remains, the damage has been done and we,re lucky we even survived with the knowledge the doctors had years ago.
I walked away realizing I'm thankful I don't have cancer and hope I don't need her clinic.
I guess I have to learn to cope with my inabilities and be thankful.

Wendy_53

ladyahni
Posts: 1
Joined: Jul 2012

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!

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cathyp
Posts: 366
Joined: Dec 2009

Too often on these type of message boards we only hear negatives. I am so thankful you shared such an inspiring positive survivor story with us. I am sure there are many others that we never hear about.
I am almost 23 years out from HD and am trying to stay ahead of the effects from radiation and chemo. I too have remained active but tire easier than my family. I have found a wonderful Long Term Effect doctor, staff and hospital. I will let them worry for me and try to continue to remain positive so I can enjoy life. My daughters are 16 and 19. The oldest born while I was dx'd with a recurrence of HD. What an irony for your mom's grand daughter to have been dx'd with HL. Best wishes to her and all your family.
Thanks again!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Had a bone marrow transplant and total body radiation as my treatment for non hodgkins lymphoma and have had a ton of side effects over the years that just pile up. I
went to see a neurosurgeon at a Memory Clinic here in Canada about cognitive issues
I have and memory issues. He ran tests and confirmed 'chemo brain' which never was
validated before but explained it by saying that some cancer drugs do cross the
blood-brain barrier but that this just kind of weakens the foundation of the brain,
didn't reallly say 'damaged it', although not sure I know the difference.

Anywho he said that what this means to me and others in my situation with treatments
like that is that because the foundation of the brain is weaker then natural things
like aging of the brain is not as solid as someone who hadn't had treatment that
affected the brain. He also said that pain can be a factor in losing some cognitive function
as can stress affect us that way as well. Apparently Ritalin and anti depressants can help some in this regard.

I have had other side effects as well, those being heart damage from a chemo drug, early arthritis, respiratory issues, blah blah blah blah blah. lol.

You might also want to have a neuropathy test done to see what nerve damage you might have sustained in treatment. I have one scheduled for later this next month. The fun never ends, lol.

There can be a high price in late effects caused by cancer treatment but then look at how long we have survived as well. Cobalt treatment was so long ago but I have known many other cobalt recipients that are still going strong today. Amazing what the human body and spirit can survive. Blessings, Bluerose

Jollybabe's picture
Jollybabe
Posts: 1
Joined: Nov 2010

I was so glad to find others going through what I am. My treatment was 25 years ago. I am having heart problems and kidney problems. I am also getting tired of my kids telling me I'm crazy!!! I will do more research and just wanted to thank you all for turning on the light!

sarabella
Posts: 12
Joined: Dec 2011

Had cobalt radiation in 1977 for a brain tumor. No side effects until 1997. Since then I've had seizures which are now under control, but I feel like my mind is going! I can't remember things and mostly my sense of orientation is diminishing. Yesterday I got turned around in my own house! Just so you know we're not crazy. Just tell your kids that you had a close encounter. The Aliens were so impressed with your brain that they had to take a sample. Buy the Anatomy Coloring Book. It is very cool and your kids will start saying nephrotic, cytology and auricular. Have a great day.

Caryn

neils_lady
Posts: 1
Joined: Dec 2011

I am Neil's wife and caregiver. I did not know him when he had cancer, but I can certainly testify to the side effects of cobalt radiation. He had 5500 rads over the period of a year to his abdomen centered on the small intestine area. Over the years he has developed multiple problems. About a year after treatment he developed "radiation enteritis" which caused "malabsorption syndrome" in the affected area. He next developed intestinal adhesions which caused numerous small bowel obstructions which could sometimes be resolved by decompression with a naso-gastric tube. He has also had several bowel resections to remove necrotic intestine because the adhesions cut off the blood supply. The latest problem has proved to be by far the most serious. The superior mesenteric and celiac arteries became occluded by a combination of scar tissue and plaque. Stents were inserted but failed. In mid July he had a major operation (80% mortality) to insert a graft into his aorta and in turn graft the two other arteries to it. Although blood supply has been restored and his intestines are functioning, we are 5 months out and his wounds have not yet healed - to make matters worse he has several small abscesses that have popped up around the wound site. The wound care nurse is treating another patient with the same problem who was treated with hyperbaric oxygen, which, as I understand, delivers greater amounts of oxygen at greater pressures while the patient is in a chamber similar to a decompression chamber. She said that patient made astonishing progress and recommended it for Neil but his surgeon has not approved it.

Neil has been through hell for the past several years, but he has lived almost 40 years cancer-free. He realizes each day he has is a gift, and that has made him the most kind and gentle man I have ever met. He was hospitalized for 54 days last summer and I lived in his room with him. I took care of the "scut work" and helped out his nurses every way I could - when I had to call them for pain or nausea meds, they were very prompt with their attention. I was also there whenever his doctors made rounds with my pen and notebook ready. I asked questions and if I didn't completely understand the answers I researched them on my notebook. It was very fortunate that I was once a biology major, and that I had just retired so I could devote my full time to his care.

At anyrate, that is our story. From many of your questions and as the result of my research, it is probably that cobalt radiation is probably at least partially to blame. The latest scientific study I read said that it shortened telomeres in hampsters. Telomeres are on the end of each strand of DNA to keep the ends safe. Every time a cell divides, it loses a telomere. When there are no more the cell can no longer reproduce. There is a protein or enzyme called telomerase that is always found in cancer cells. It allows cells without telomres to reproduce. Apparantly in some cases it can "grow" more telomeres so the cell can live and divide longer. In 2009, the Nobel prize was awarded for the discovery of telomeres and their function, so it is new science. It follows that when many "good cells" are killed by radiation and the ones that survive have shortened telomeres (yet to be proven in humans) the survivors have to replicate far more often, which causes premature aging and, if the cell starts producing telomerase to keep alive, the hypothesis is that it could lead to primary or recurrent cancer.

dallen1
Posts: 9
Joined: Mar 2011

Amen blue rose,thanks alwaysjudee. 32 years after my brain tumor and subsequent cobalt radiation treatments I have developed three different cancers as a direct effect from those treatments. I have memory issues and a neurologist informed me that my brain is aging at a faster rate. I am still hanging, I have lost some parts gained some too. I am working and playing golf (badly)l would like to blame radiation for that, but no one will give me any strokes. Stay positive, attitude is important. Good luck all

Hondo's picture
Hondo
Posts: 5655
Joined: Apr 2009

Sorry to hear you are going through all this 32 years after radiation treatment. I am just at 9 years out and so many side affects and every years a lot more new ones to add to the list. But I guess I should just be thankful that I am still here.

╠╣ONDO

24242
Posts: 1417
Joined: Mar 2001

I am 14 year breast cancer survivor of stage 3 and went with my own grandmother in 1966 while she was treated for her breast cancer with cobalt treatment. Wow I am so glad to hear of such survival stories, looks good on you all. I too am the cancer survivor who has had to learn with many diseases after starting with one, cancer.
I guess this is now why the say radiation isn't a good thing in the long run. 40 years of studying you, lolol.
We are all a study and I am ok with that since the only reason we are still alive.
Unlike others I don't believe in the cure, I believe in the longevity of life and I am the walking miracle since many with less forms of cancer have not survived. I truly don't know anyone who is as young as I was at 36 in my home town who survive only if your an elderly woman.
I believe this money spent on treatments prolonged my life is all and I am happy for it. Dealing with new lumps makes one realize just how short life is if I had forgotten somehow. One has to remind doctors that we wouldn't be here if there wasn't something the matter including two new fast growing lumps. Do they truly think we like being poked and prodded.
Nice to have stopped and read your stories. Good for you all...
Tara

redbeard0206's picture
redbeard0206
Posts: 10
Joined: Mar 2011

Was diagnosed with Wilm's tumor in 1969. Had complete left nephrectomy. Received vincristin and cosmagen chemotherapies and cobalt treatments. Now 43 years later I have been diagnosed with clear cell renal carcinoma with a 4cm tumor on right kidney and it matastisized to S1 & L5 with approximate 4 cm tumor. Tumor has been removed from spine. Surgery was said to be palpative. Have seen great relief of pain in back. Then a month or so later had partial right nephrectomy with clean margins and good kidney output. I am taking Sutent and getting 25 radiation treatments to the spine in S1 & L5 area. I am down 12 of the 25 treatments. Dr. confronted me today with idea of doing 3 additional treatments. His concern is complications that might arise do to previous cobalt treatments 43 years ago. Possible complications are scar tissue in bowel in a few years and nerve damage or scar tissue affecting nerves in and around lower spine. I have a few days to make upmy mind but thought I might find some helpful information here to assist me in making the decision.

dubc
Posts: 8
Joined: Apr 2008

KM25, like you, I had surgery and cobalt radiation treatments for a medulloblastoma. I was only two and a half years old in 1973 and don't remember it. I had thyroid and petituary (sp) gland issues. I stopped growing around the age of ten or eleven and received growth hormone shots for a long time. I was the first or one of the first to receive the new synthetic hormone after they discovered a hidden, undetectable disease in human growth hormone.

It's 38 years later and this thread has me woried about future issues. What those Doctors did for me back then saved my life and I would never want the outcome to be different. We are the first generation to deal with these issues and like it was said above, I hope it does some good for future cases. I know what I've gone through already has. Hold your heads' up high everyone and stay positive. Km, I have same symptoms, that area of the brain controlls balance and motor function. Hope to talk again.

MEM2
Posts: 3
Joined: Jun 2011

I had Hodgkins and had Cobalt Radiation when I was 8 turning 9 and 3 years of MOPP Chemo. Probably around the same year you were having your. I think I began in 1974 and ended in 1977. I can never have any more radiation. I am fortunate to be alive. I have many mishaps due to the radition. Major one being a right sided hemidiaphram. I only have one function lung. The doctor didn't know where the tumor ended and my lung began because of the radiation.

Right now I am experience problems with my heart and lungs and am aggressively trying to find out what exactly is going on. I have been told that these problems are directly related to the radiation treatmnent.

I thank God everyday that I wake up and everyday for the children I was never supposed to have. My doctors saved my life back then also and although I hope that they can figure out what is going on I too wouldn't change a thing. Everyone has something in life that makes them different mine just happens to be scars and affects of cancer and the treatment. Just be thankful that the doctors who where treating you had the foresight to give you that treatment. They didn't know then whatt the long term affects would be.

sly
Posts: 3
Joined: Feb 2009

i also have side effects from radiation to all areas of my neck. I had throat ca. in 2000 and had 37 radiation treatment to my neck.. No i am a silent aspirator because my gag reflex in my throat is almost shot due to radiation. I have to have my esoghagus dilated every year due to heavy scar tissue in my throat.I am now on nectar thickened liquids or i aspirate regular liquids in my lungs. So i am leaarning to live with all this. I copd now so i seem to get pneumonia easily. But the Lord has helped to get through this. One day at a time. I am still working full time. I am a nurse.

KM25
Posts: 3
Joined: Dec 2008

Dear dubc -

First of all, I must profusely and sincerely apologize for being so late about responding so slowly to your earlier response to my posted message – about others who might have knowledge about long term effects about cobalt radiation received during surgery for a medulla blastoma.

It seems that I had stumbled across the Cancer Survivors Network, posted my inquiry, and then … simply forgot it. A new internet search, recently, got me a “hit” consisting of my old message, I was surprised at how many responses I had received. Of course, I was most interested about someone who has and is having the same experience that I have,

It is now 43 years later, and the degradation in my legs appears to have finally stabilized, and I do get around using my walking sticks or one of my 3 rollators i.e “walkers” on wheels. I do hope you are doing well, and that we can continue to exchange information and knowledge. If you prefer, you can also contact me directly at ikaupe@sonic.net.

- Take care!

hipntrippy
Posts: 1
Joined: Sep 2011

I too am a long-term survivor of cobalt radiation therapy. I had a large growing cavernous hemangioma on the entire length of my medial side of the right upper thigh. I underwent the therapy 37 years ago at Mayo clinic-St Mary's in Rochester, MN, and had been warned by a few doctors over the years that i should keep in touch with an oncology practitioner for cancer screenings due to the type of therapy i had recieved in the past. So far the long term effects... noticable difference in the size of my two legs. My treated leg is about 70% the circumference of the non-treated one. Function-wise there is no noticable difference; but the CT scans i have had all show dramatically less adipose tissue on my right leg. I feel fortunate to have been able to father a child, and she is an angel!
i have also noticed that whenever i have a bacterial infection, if it gets severe enough, my right groin lymph nodes become severely engorged, the area where the tumor was becomes extremely swollen, red and warm to the touch - looks like a cellulitis but IS NOT. The whole faux cellulitis thing is not an actual infection, but it is a secondary symptom of the bacterial infection (usually a strep infection). Sometimes my various doctors in the past have not wanted to listen, but that's why they are not my current doctors. I have had this problem 2 - 3 dozen times over the years. I hate getting sick, as it is never "just a fever" but all this other crap happens. viral infections seem to have not been a problem when they strike... don't know why, just that i never had these symptoms with flu, cold, varicella, etc. I hope cancer does not strike, but if it does, i will go down fighting if it takes me out.

Hondo's picture
Hondo
Posts: 5655
Joined: Apr 2009

You are a long term survivor at 37 years I am glad you found CSN and hope you can share some of you passed experience on C treatment with us on other forums here.

Wishing you the best
Hondo

sarabella
Posts: 12
Joined: Dec 2011

35 years ago I had cobalt radiation to remove a brain tumor. I had no side effects until 15 years later. I've had seizures, memory loss, coordination and orientation issues. Seizures are under control with meds but new symptoms pop up on a regular basis. Just so you know, you're not alone. :) CT

sarabella
Posts: 12
Joined: Dec 2011

35 years ago I had cobalt radiation to remove a brain tumor. I had no side effects until 15 years later. I've had seizures, memory loss, coordination and orientation issues. Seizures are under control with meds but new symptoms pop up on a regular basis. Just so you know, you're not alone. :) CT

Hondo's picture
Hondo
Posts: 5655
Joined: Apr 2009

Wow so sorry to hear about the many side effects after so long a time. I am just 9 years passed my first treatment and 6 years passed the second treatment and side affects from the all the treatment are like non stop. I hate to see what is in store for me 35 years down the line. I wish you well as you continue your fight.

PS: Welcome to CSN
Hondo

packers63
Posts: 1
Joined: Jan 2012

Hi Hondo

It has been 49 years now since my treatment with little side effects other than short energy and vertigo. Now I have been diagnosed with basal cell carcinoma in back of my ear. I am considering just leaving it alone because it doesn't really bother me. If it is another 20 years before it gets worse why not leave it. I adjust my life as any side effects show up and pray that I am doing the right thing. It is good to hear from other people that experienced similar medical conditions. It always has information on how to cope with the conditions you may experience.

curmar
Posts: 1
Joined: Jan 2012

After a hysterectomy to remove a tumor 42 years ago when I was 17, I have been very fortunate. I too have had memory loss and neck and back problems. When I was 25 I started seeing a chiropractor occasionally. Now, I am still seeing a chiropractor and a physical therapist weekly. I have had gastro problems and gall bladder. I am working on a cure for osteoporosis, too. I consider myself to be in very good health inspite of it all. I work out and try to eat right. If you didn't know all my background you would not know by looking at me that I have had so many issues.

I recently have found that if I can keep my body pH balanced, most of my problems fade away. pH is so so important. Please do some research on pH and cancer. There is a world of information out there that the cancer community should be aware of to prevent and cure cancer naturally. It is a medical industry secret. I recently have had trouble keeping my pH right with diet, but I found that 2 tablespoons of fresh squeezed lemon juice and a level 1/2 tsp. of baking soda once in the morning and once at night keeps my pH where it needs to be. You can purchase pH strips inexpensively from ebay.

Attitude is important. I pray you will find this information helpful.

clt1234
Posts: 5
Joined: May 2012

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.

clt1234
Posts: 5
Joined: May 2012

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.

clt1234
Posts: 5
Joined: May 2012

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.

clt1234
Posts: 5
Joined: May 2012

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.

clt1234
Posts: 5
Joined: May 2012

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.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Luckily for us there are specialist that are aware of the long term effects from radiation and chemo. I see one at Memorial Sloan Kettering Cancer Center in NYC. I am 23 years out from Hodgkins Disease and 4+ years from Breast Cancer(from the radiation tx's). There are many similair pediatric/adult long term followup clinics in the country. I am so pleased to have the doctor on my team to manage and be proactive against all the LT effects we suffer from. These doctors and clinics are doing long term studies on survivorship. Hopefully there is a clinic near you that you may benefit from. Good Luck.
Cathy

LauraLuLu
Posts: 1
Joined: Apr 2013

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.

 

smilee77
Posts: 3
Joined: Jun 2012

Hello KM25: I have had major long term side effects from cobalt radiation after having brain surgery way back in 1972. I was 13 years of age and when i was 28 years old i had a stroke (that is what the medical profession had to label it as). I am paralyzed from my knee down to the tip of my toes on my right leg and weakness throughout the whole leg. My balance is just really terrible and i walk like i am drunk. Six years after my so called stroke i had a heart attack at age 34 years. It is so frustrating for me as no doctors will even recognize me as a childhood cancer survivor and give me all other kinds of diseases and i fight with the medical profession all of the time. My original neurosurgeon that did the surgery on me has passed away quite a few years now or else i would not be having all of this trouble/ I have not worked since my stroke in 1988 because i have severe fatigue and heat and the sun really bothers me emencely. I was in puberty when i had my brain tumor surgery and it stunted my growth and also made me sterile. My hair never grew back on the back of my head where i had the treatments because the radiation burned the folicals in my head. I also have poor dexterity in my hands and it is very frustrating but one does learn to live with it.
I am single and have no children as my ex fiance left me when i could not walk very good after the stroke. But the motto i live by every day is: Life Is What You Make It! and i make it the best i can with what i have... I am a very optomistic person and i always take a bad situation and look at the good in it! Life has taught me alot of very interesting stuff and i would not be who i am today if it wasn't for what i had to live thru in my life. I am so glad to have found this site and reading some interesting story's out there as i do not feel so alone now and knowing that there are other people out there similar to me! Oops should mention what kind of brain tumor i had ... Cystic Astrocytoma of the Cerebellum. Amd our situation is similar cuz u had a brain tumor also so we can relate more with one another. Please write back to me i would love to hear from you. u chat also catch me on chat under smilee 77 anytime during the day! Bye the way my name is Debbie! God bless :)

pappy113051
Posts: 2
Joined: Jul 2012

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

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

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

theed
Posts: 1
Joined: Jun 2005

Hi I had cobalt radiation in 1968 for a brain tumor. Spongio blastoma. Recently ny top teeth were all extracted to prepare for dentures. At each extraction site, at least one bone spur was present. Any connection?

GW77
Posts: 1
Joined: Jul 2014

 

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.

 

R.C. Dramer
Posts: 1
Joined: Sep 2013

I had 36 treatments of cobalt radiation for Hodgkins Stage 1 in 1973. When negative effects from the coblat radiation show up as medical problems, I remind myself that i wouldn't even be here if it hadn't been for those treatments.  So far I've experienced calcification of aortic valve ( haven't replaced it yet) , tonsilar cancer in 1994 due to radiation in 1973 ( got lymphectomy )

and just recently I was warned not to have a tooth extracted due to something called "osteoradionecrosis" caused by radiation that can hinder the jaw from healing after oral surgery.

Do any of you know of a website run by medical researchers where we who have survived a long time after cobalt radiation treatments can get more "official" information on our situations?

 

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