20 Plus years after radiation

Yup. I also had radiation (and chemo) as a toddler over 25 years ago to treat a neuroblastoma. I continue to face the side-effects. Its like the gift that keeps on giving:) I am thankfully healthy, with no recurrance of the cancer. However, I too am interested to know if there are others out there who have found ways to address the long-lasting effects. My doctors haven't been able to be that helpful.

my 17 year old son had a bone marrow transplant at age 8. No radiation but massive chemo that left a host of neurological issues. Unfotunately your other reply guy is right, docs are basically no help. There are long term survivors programs at most major cancer centers. We've found them to not be much but an in title.Long term survivor care is the latest talk from the cancer medical professionals.There is an excellent book written by Wende Hobbe at the survivors clinic at the Philadelphia Children's Hospital. I suggest all cancer patients and survivors read it. Life is different after diagnosis and you never can go back to before.

web page name,
dickl

I had 25 radiation treatments following 2 surgeries for cervical cancer in '84. I have experienced back/leg/feet problems for the past few years. Tests show arthritis, degenerative disc disease. I'm wondering how much of this is related to the radiation. I've tried getting info on the long term effects of radiation, not much out there. I check this site once a year or so, was glad to see your message. I think my problems are related directly to the radiation. I'm grateful I survived these past 20 years, but would like to have a doctor verify the connection, none have so far.

birdgray said:

late effects of radiation
http://www.leiomyosarcoma.info/raddiscuss.htm

I dont know how I found this web site but it has everything about the late effects

effects
Had radiation for all in 1979. Feel pretty good except getting fat and lazy. Curious about what effects people have.

Post radiation
Hi, I'm 25 years post radiation for Hodgkins disease stage 11. I have been having some problems with upper abdominal pain and am concerned about a secondary cancer. I will have a follow up apt. next week and will post again. Hope you still checking the site.

RA said:

Post radiation
Hi, I'm 25 years post radiation for Hodgkins disease stage 11. I have been having some problems with upper abdominal pain and am concerned about a secondary cancer. I will have a follow up apt. next week and will post again. Hope you still checking the site.

Post Radiation
RA,

First off, congrats on making 25 years!

I still lurk around here, so please let us know how you make out with your appointment.

Paul E. (Hodgkoid2003)

There are many of us
I am a 22 year survivor of non hodgkins lymphoma and have many late effects from treatments but it has only been in the last 8 years I would say that I have had doctors actually validate that. I do believe that they probably didn't know what might lie ahead in late effects of some of the chemo drugs and radiation and they probably didnt realize how long we would in fact survivr as treatments became more effective.

I had a bone marrow transplant on recurrance and on diagnosis had CHOP and localized radiation. During transplant I had total body rads too.

Now I must say here that you have to remember that everyone is different in how they hanle treatments as they are all different people so let me say that first off. Not all experience the same as other survivors but there are lots who do, lots of similarities at times.

My late effects include: heart damage due to adriamycin (chemo drug) - now have a pacemaker that had to be implanted on an emergency basis due to extreme arythmia from the damage, osteo arthritis (from the rads they feel), fibromyalgia (also no doubt related), chemo brain (cognitive issues and memory issues) - they now know that some chemo drugs do cross the blood/brain barrier where before they didn't feel they did. Then there is radiatioin damage to the brain that they feel may well cause the cognitive problems down the road (they don't call it 'damage to the brain' they say 'weakens the brain' rather - the rads that is. I also have periferal neuropathy from treatments they feel and am being tested further for more of that. I have elements of PTSD from trauma scenes during treatment, anxiety attacks (they seem to be getting worse), and of course the ever popular fatigue that keeps me down daily. I have dry eye syndrome that is constant and embarassing - tears falling out of my eyes most days and nothing other than more surgery for correction. I am on 12 different meds that will continue from here on in. 3 of those are vitamins that I have to take for linked issues.

I am divorced from my husband and cancer was a big issue in the decision indeed, many unfortunately find that this happens to them as well. For the lucky ones this journey with cancer makes their relationships stronger - they are the lucky ones to be sure.

I still see doctors and have tests on a continous basis for all of the above and many times I feel incredibly overwhelmed for all of these ongoing issues. Many of my continued testing is very invasive and I have become a total wuss, maxed out from all the interventions I have had through cancer. My calendar is a mess with appointments, even yet, and re scheduling often as health issues get in the way and I am unable to get out.

The fun indeed never ends. lol

On the flip side I was able to be there to raise my two children who were very small when I was diagnosed, one just got engaged yesterday and is finishing University and my son is now in the field of work he studied so hard to become a part of.

Yup, there is a high price to pay for the cure for many of us, and yes there are many long term survivors out there - many have the same validating stories - we are not crazy, these long term effects exist and the specialists are now acknowledging that fact.
Sites such s this are very important in order to bring us all together.

Blessings, Bluerose

blueyz53 said:

I had 25 radiation treatments following 2 surgeries for cervical cancer in '84. I have experienced back/leg/feet problems for the past few years. Tests show arthritis, degenerative disc disease. I'm wondering how much of this is related to the radiation. I've tried getting info on the long term effects of radiation, not much out there. I check this site once a year or so, was glad to see your message. I think my problems are related directly to the radiation. I'm grateful I survived these past 20 years, but would like to have a doctor verify the connection, none have so far.

Radiated as an Infant

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. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease. My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later. After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan. After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years. The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered. I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled. 

Janabeth said:

radiation support group
I think MD Anderson has support groups, and they have a followup clinic. PLEASE CHECK THEM OUT.
Why don't you send your story to ASTRO.org and see if they can direct you to a support group, too?

It's amazing to me how ASTRO's brochures talk about how well the body's healthy cells repair themselves after radiation! I wish people like you would start contacting ASTRO, ASCO, and the ACS. I read what they write about my cancer and send them regular things to correct.

American Therapeutic Radiation Organization
Amercian Society for Clinical Oncology
American Cancer Society

25 Years + Bone Marrow Transplant Surviviors
Hi,

Any members have a transplant at least 25 years ago,if so i'd like to hear how you are and how life has been in general

Kind Regards

Brian.