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Longterm effects of radiation therapy

Posts: 1
Joined: Jun 2009

I am 56 years old and I had Hodgkins when I was 16. Treatment was surgery for tumors in my chest and radiation therapy. I am now having problems the worst of which is severe aortic stenosis. There seems to be some question as to whether there is a fix for this. Normally it would mean heart valve replacement. Because scarring around the heart from the radiation, surgery may not be an option. Any comments please. I have led a very healthy and active life for the past 40 years.

slickwilly's picture
Posts: 339
Joined: Feb 2007

Well Gary I am sorry. My name is Garry also but my parents used the old english spelling with two R's. I had lymphoma in my face in 2003. Half my sinus is full of scar tissue. It took five years to talk a doctor into fixing my nose so I could breath through both sides. During the operation he found out a bunch of bone was gone as radiation can thin bone. They had to take some out of my sinus cavity to rebuild my nose. Then my neck filled up with arthritis and started to degenerate. Nerves got pinched off and I lost the use of my left arm for three months. Now I live in pain most of the time as no one will touch my neck. It seems the radiation made the bone so brittle that a fusion or any operation could leave me in a wheelchair for life. So here I sit on disability at 54 years of age. And I lived one heck of an active life also. If you scan the pages of Emotional Support you will find others with problems from Radiation. I tried to go to the best doctors available for answers when I started having problems. I would hope you do the same and get second opinions. Slickwilly

hodgkoid2003's picture
Posts: 96
Joined: Apr 2009

Before you would consider any kind of surgery, I would encourage you to seek out a "late effects" clinic. This is a doctor who specializes in the effects of the treatments that save our lives and come back to haunt us later.

In particular, if you are dealing with heart issues, I have heard a lot of great things about Dana Farber Hospital in Boston, as Dr. Chen deals a lot with irradiated hearts. There are many other late effect clinics in the US (not sure where you are located, but a friend of mine once put it "don't let economics determine your care").

Paul E. (Hodgkoid2003)

(recent recipient of double-bypass surgery due to radiation therapy 20 years ago)

Posts: 38
Joined: Jul 2009

Hi there Gary. I had non-Hodgkins when I was 22. I had to have 8 rounds of CHOP chemotherapy and 6 weeks of radiation to my chest. I had about a 40% chance of cure.

I am dealing still with after effects.

Today I am 36. I was just diagnosed with breast cancer-it doesn't run in my family. The radiation put my at high risk for breast cancer and I did my yearly mammograms faithfully. Right before this year's mammogram I found a lump. And so goes the story...

I have cardiomyopathy from the chemo and radiation both. I have to be on heart medication for the rest of my life. I also have scarring on my left lung and diminished pulmonary capacity.

So yeah, the after effects really suck.

I have been as active and healthy as I can be considering. And all I know is it was worth the last 14 wonderful years that I have had. Even with having to do this all again-which SUCKS. But I have two beautiful daughters and a good family.

I hope they are able to help you with your aorta. It sounds very serious. Just keep your chin up!

Posts: 1
Joined: Sep 2009

I had radiation to the stomach area more then 40 years ago and now have full blown side effects of the CURE!! From fibromayalgia to problems with my legs. I have had two femoral by passes and two back surgerys. When I was in my 40's a doctor told me my system was that of an 70 year old man. Hey! We are here so that is the most important thing. Keep moving and good luck!!

melrose's picture
Posts: 2
Joined: Oct 2003

Hi there- I was also treated w/ mantle radiation- there is a long term follow up dept. at Sloan Kettering in NYC Dr. Kevin Oeffinger I have also heard about aortic problems-

Best to you

hodgkoid2003's picture
Posts: 96
Joined: Apr 2009


Actually Dr. Oeffinger is the specialist, and he is very special, that I see up at Sloan Kettering. He is so knowledgable about late effects, what to look for, and how to manage them. I don't know where I'd be right now if it weren't for him.

Paul E. (Hodgkoid2003)

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Joined: Oct 2009

Hello, Gary.
I wonder how your heart valve problem turned out, whether you are able to have surgery or if there's anything else that can be done to help you. Doing the math, I figure you had radiation treatments in 1969, the same year I had full mantle radiation for Hodgkins.

I have just discovered a survivorship clinic and we're looking into heart problems now. I've known for a long time that something isn't right, but I thought it was all due to diminished lung capacity and/or normal aging. Now I know there's heart damage too.

I was afraid I might be headed for surgery again, but reading your comments, maybe I should be more worried that there's nothing to be done, which would be disappointing. On the other hand, I've had 40 pretty good years, and I may not have to save as much for retirement!

I hope you're doing well.

Posts: 2
Joined: Nov 2009

I have been looking for a doctor that knows about late effects of radiation for a long time. I had Hodgkins Lymphoma at age 3 in 1969. 66 radiation treatments to the full mantle field!! This was bitter sweet. I am alive after being told I was terminal. But the effects have been damaging. I just went through a secondary cancer, papillary thyroid, due to the radiation. I have diminished lung capacity. Although, I can't get one of my doctor's to understand what I am experiencing even the pulmonologist! Connecting with other people who have similar situations would be great. If you have any information about resources I would really appreciate it.

I hope you are doing well now and look forward to hearing from you.

hodgkoid2003's picture
Posts: 96
Joined: Apr 2009

I'm not sure where you are located, but at least from your name, you might look into a Dr. Rosoff, I believe at Duke University, at least for leads.

I have several more resources depending where you are.

I am in fact, seeing a new cardiologist this week for my own issues. As opposed to my last cardio, this one has studied late effects of rads and chemo.

Paul E (Hodgkoid2003)

Posts: 3
Joined: Nov 2009

Paul, do you know of any doctors or clinics interested in late effects of radiation in the DC area?

I was treated with mantle radiation for Hodgkins in 1972, and now have all kinds of chronic health problems, as well as pronounced weakness in the chest, shoulders and neck.


hodgkoid2003's picture
Posts: 96
Joined: Apr 2009


Johns Hopkins Cancer has a long term clinic. A little further north, University of PA. Further north than that, and age treated may be an issue, would be Sloan Kettering in NYC. Those would be the places to check first.

Paul E (Hodgkoid2003)

cher26bear's picture
Posts: 9
Joined: Nov 2009

Hi there,
I wish we had the long term clinic's here in Ontario....I had Hodgkins disease 1991 when I was 17. Treated with front mantel 30 gy and 50 gy. Then 30 gy lower abdomen. 2A stage.
Thyroid gave out immediately. Now I have searched to find out the late effects. I am 35 and have had 2 biopsys to date to check for breast cancer.(that was last year) I just went for a follow up mammogram and ultrasound for breast cancer again. My doctor sent me to a breast cancer specialist and although she is not 100%...feels my risk for breast cancer (lifetime risk) is around 40%. I feel like there is no follow up. My doctor admits not knowing the late effects from radiation....I just want to be educated and find this so frustrating!! I also am looking into getting a Subcutaneous mastectomy. The breast clinic doctor really didn't give a recommendation. Tamoxifen was a recommendation--but I hear that due to my radiation...I shouldn't be on that. (DR..didn't know) MRI's usually always end in biopsys...even though it may end up with nothing...If anyone know more about this...please let me know!! Thanks so much!!

Posts: 11
Joined: Dec 2009

I had Hodgkins at age 19, was treated with 5 weeks of front mantel radiation. At 48 I got breast cancer. I had a single masectomy March 31st, 2008. A mamogram did not show the cancer it was an MRI and then a MRI guided biopsy. I not have a mamogram and an MRI annually staggered so I have one every six months for the other breast. My understanding this is what is needed in our situation. Does anyone know the chances of getting breast cancer in the second breast?

cher26bear's picture
Posts: 9
Joined: Nov 2009

Hi there,
When talking to the breast cancer specialist, she told me with radiation treatment alone (30 gy to 50gy) I was looking at around 40% lifetime risk. Once you have had breast cancer, the risk does go up a bit in the second breast-she stated based on my history most likely around the 10% mark-being 50%. I hope that helps...I know how hard to is to find those types of answers. I am doing a preventative masectomy. It is the skin sparing one.
When talking to my specialist...she mentioned the drug you can take for 5 years--down fall for us---it can cause heart attacks/strokes--with us being radiated--it is not a chance that we should take. I have had several biopsys--looked at MRI's to stop the emotional roller coaster-but she stated MRI's almost always end up with a biopsy as they are so sensitive. (which thank heavens they did in your case!!!) I am having mammograms every six months as well..I was 17 when diagnosed and that was 18 years ago.
Hope this helps a bit!!

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Posts: 7
Joined: May 2005

I was treated for hodgkins disease at age 10 in 1974. High dose radiation to upper body, removal of spleen and Stage IIA. Thyroid removed in 91. Heart murmur detected three years ago. Aortic valve is in severe condition and two ca blocked. Heart damage due to radiation treatment. I have been in good health most of my life with symptoms progressing and escalating over past two years. Looking forward to mechanical valve and hope to go wilderness canoeing in late summer. Bruce

Posts: 3
Joined: Apr 2010

Interesting web site.

I had Hodgkins in my neck when I was 17 (1972, now 55, so 38 years ago).

I had radiation. 200 rems per day for 19 days (3800 total), mid chest to base of skull. In case your wondering, 800 rems whole body in one dose is enough to kill you.

They did a destructive inspection on my spleen and a general exploratory (no cancer down south).

I now have:
underworking thyroid, on thyroid pills for life

fibrosis around the edges of my lungs (where they didn't use plates of lead to protect me), no treatments, yet

I had a massive heart murmur due to calcification (aortic stenosis), 13 weeks ago I had a pig valve installed, and a triple bypass. Doc says there was more calcification in there than he expected.

I an experiencing some hearing loss, and I'm wondering if it isn't radiation induced.

I have general weakness of the bones and muscles in my upper chest. I have broken many ribs and collarbones racing motorcycles. Feel like my neck is arthritic, and have muscle spasms in my upper back often. Also had rotator cuff surgery, and I have a torn bicep tendon. Don't know how much of this I can blame on radiation.

Glad to be alive, but it's tough sometimes to maintain gratitude.


marycloe's picture
Posts: 3
Joined: May 2010

Hi Mike,

My passion is long distance bike riding. I discovered severe arthritis in my spine in 2005 while training for a century ride. It was recommended that I have cadaver discs implanted. I chose to strengthen my muscles and made a mechanical adjustment with my bike. I still have neck and shoulder pain, but stretching and pain killers help too.

In February I had a MRI of both breasts. After several mammograms, an ultrasound and another MRI, I finally had a biopsy and discovered that I have DCIS, ductal carcinoma in-suiti, basically calcifications of capillaries within milk ducts. This is a secondary cancer from the radiation for the Hodgkin's. My doctor considered a propholactic double mastectomy, but ruled that out as there is some doubt that my skin would heal. I will be monitored every six months via mammograms for further DCIS.

Tomorrow I go for stress test.

I have found that most doctors that I have dealt with thus far are unfamiliar with the long term effects of the radiation, and there is a serious lack of research on the topic. Talking to other survivors is, in my opinion, the only way to get through this.

I hope that you are better, that you are still glad to be alive, and thanks for listening.


Posts: 3
Joined: May 2010

I'm new to this network and find it a very valuable tool for all of us who deal with cancer. I will apologize right up front to anyone offended by my thoughts.

I am 55 and had Hodgkins,stage IV, treated with surgery, chemo, and radiation 25 year ago. And do you know what that radiation did to me? It kept me ALIVE! It gave me the opportunity to raise my kids and many other things, including to be here and type this message.

Paul (are you really a twin? me too) is right on...it is the FOLLOW UP care for long term effects of this life-saving treatment that we, and especially our doctors, need to monitor.

Every one on this page should have a 'marker' in their health care record to alert their doctor to watch for certain problems at intervals in our lives. For example, at 15 years post mantle radiation treatment, begin testing for thyroid cancer: physical exam, ultrasound every 3 years, etc. Order an echocardiogram, etc.

We all share similar fates, we have a high probability of developing another medical problem. I was diagnosed last fall with thyroid cancer. Of course, we find it's due to the chest radiation from the Hodkins treatment 25 years ago.

It' my own opinion but, as long as we are proactive in monitoring our health, I'll forego the complaining and just enjoy the fact that I'm still here!

Best wishes to all.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1902
Joined: May 2012

My sentiments are identical to what you express here, UCanDOit.   I got my share of side-effects from just chemo, never having received radiation (bad neuropathy, lung imparement from Bleomycin), but my only attitude and thought toward my doctors, and toward Oncology generally, is one of thanksgiving.

So few people know much science, which is especially weak in the realm of causality.  Hell, no one knows what causes lymphoma the first time. So, everyone knows what causes it to recur ?   Logicans, since Greek times, have known one of the most common fallacies in human thinking (given here in Latin) : Post hoc, ergo propter hoc ("After this, therefore because of this.") .

In other words: "I had that cancer, and now I have this cancer. Therefore, the first episode caused the second."  Medically, this is in most cases possibly linked, at the level of conjecture.  But it is almost always (there may be exceptions) light-years away from being "proven."  One reason lymphoma patients get secondary diseases as often as they do is that they have such long survival rates, compared to most other cancers.

Thanksgiving is a pretty much dead sentiment in our world. You will not see it on Dateline or Latenight or Ellen. 

I have a much older friend who is dying with prostate, whom I carry to the cancer center for most of his care.  He was diagnosed nearly 14 years ago. Most of that time, he has been vigorous and well, but has been Stage 4 for over two years now.  He was told three months ago that he could go on chemo for longevity, or die within about 4 weeks.  He has chosen (fortunately) the chemo, which has dramatically lowered his PSA, and has kept him alive a lot longer than he otherwise could have possibly lived.  His most common comments ? Complaining that he is tired !  He could have just died 14 years ago, and been spared the misery of being "tired !"

I have never heard him give a word of thanks for his decade-and-a-half of life. The whole process of treatment for him has been an "ordeal."   I love him as a dear friend, but I just don't get it. I cannot get it at all.



jan bear
Posts: 1
Joined: Apr 2010

My cardiologist doesn't believe I can have Aortic Stenosis valve replacement surgery due to the chest surgery, radiation,lung fibrousis,and Hep C. I live in Illinois, were are you getting treatment?? Anyone have ideas????

Posts: 1
Joined: Jul 2010

I was diagnosed with Hodgkins Disease in 1965. Had 20 cobalt treatments to the chest. Have been disease free since that time. Have 3 children. 18 years old when diagnosed, now 63 years old. Starting having heart issues when I was in my early 40's. Ended up with an Aortic replacement, triple bypass and eventually a pacemaker. I have recently been referred for a heart transplant workup. Also suffer from pulomnary restrictive disease.
Hypo thyroid and diabetic. So in essence, a mess. Fortunatley, I found a doctor at the University of Minnesota that runs a Long Term Care Clinic for people that had childhood cancers. He follows their problems in later years and seems to get the big picture.
Long term effects of radiation and chemo can be devastating. Enjoy each day! Marcy

m-star's picture
Posts: 444
Joined: Apr 2010

Hi Marci

what are cobalt treatments? Is that really harsh stuff? i worry more about heart problems now than anything else i think. I mean,your heart can just give out without warning and thats what scares me. I had a series of heart tests and scans last year but they said it showed "nothing significant"?????

I have been getting palpitations and sharp pains in my chest (especially on taking a deep breath) for yrs. When i finally got reffered to a cardiologist,i asked him if my problems could be stemming fron the mantle radiation i had for HL,and he said no!!! WTF!!!
Now i know from being on various sited and speaking to diff ppl,that heart problems are a very real risk. I am frustrated that the cardiologist thinks this and this,to me,feels like he is being dismissive as i am only 36 yrs old.

I think i will talk to my onc about it next year when i have my annual check up and ask her about the risks of heart problems. I may print off some info and take it with me as back-up!Failing that,i see no other option than to pay and get my heart checked privatley.

bluerose's picture
Posts: 1104
Joined: Jul 2009

I am a 22 year survivor of NHL and have many late effects from treatments. I never had any heart problems prior to the chemo but developed an arythmia after the first round of chemo and later when the cancer returned 2 years after regular CHOP treatment, chemo, I had a bone marrow transplant and went into congestive heart failure and nearly died.

Years later the atrial fibrulation as I found it was, arythmia, just got worse and worse and of course I felt it was the chemo. All doctors poo pooed the idea for years until the last 10 or so when it became clear that yes we weren't nuts and late effects did happen. Turned out the adriamycin I had in chemo was now known to be a big reason for the atrial fibrulaiton in many people. I had to have an emergency pacemaker implanted about 7 years ago in an emergency trip to the hospital where once again I nearly died.

Now I am on 3 drugs for my heart as well and since that first arythmia years ago have been in many ambulances with afib that takes me to near fainting when it gets super bad.

Lately there seems to have been some breakthrough in my afib, mysterious indeed, it seems to have almost disappeared and this is very strange as usually afib just gets progressively worse. I did change one heart medication about 7 months ago because my old heart drug went out of stock for a period of time so all on it were scrambling to get something to replace it. The new drug my cardiologist put me on was called Tiazac and apparently it was a little better for afib and also had a blood pressure componant and instinctively I think that I have had a hidden blood pressure issue for years that has gone undetected and just so happened that for me perhaps this simple med is my magic bullet.

I have mentioned this drug to others who have had similar afibs, just on the off chance that if they mention it to their doctor and it's appropriate for them they might too see the amazing results I had with my afib. My afib was debillitating, I couldn't plan anything, couldn't even get up to let ambulance drivers in when they were called to my home as the dizziness was so bad and that has gone in only one short year to nothing. It's a miracle and I think worth mentioning to anyone with afib. Of course everyone is different and this drug might not be appropriate for you or others but when I see this kind of result up close and personal I have to share the story.

Gone too with this disapperance of my afib is a flu-like feeling I have had since my bone marrow transplant and now all of a sudden after years I can start to plan outings and appointments. It really is a miracle. Hope and pray it lasts.

Now if I could get rid of all the other late effects like fibromyalgia, osteoarthritis, chronic fatigue, neuropathy, hair loss, facial sweating, chronic pain blah blah blah, that would be just peachy. lol.

All the best and I pray for miracles for you all. Blessings, Bluerose

Posts: 2
Joined: Nov 2009


I too have aortic stenosis. Sometime my cardiologist calls it sclerosis. They believe this is from the 66 radiation treatments I had 40 years ago for Hodgkins Lymphoma. Although, no doctor I have seen yet knows what to do or say about it. I have searched for a doctor, but have come up empty. I hope you continue to do well.

marycloe's picture
Posts: 3
Joined: May 2010

Hi Garyn.

My name is Mary. I am 51 years old now and had discovered that I had Stage 2A Hodgkin's Disease when I was 29. I had mantle radiation for five weeks or 3600 rads and prophlactic abdominal radiation for four weeks or 3000 rads.

I am a very active woman, and my passion is long-distance bike riding. I am still able to ride, although I do need to bring the inhaler with me.

Now I have discovered that I have DCIS, Ductal Carcinoma In Suiti. This is a very early stage breast cancer that is considered to be a secondary cancer from the radiation for the Hodgkin's. Tomorrow I go for a stress test.

I am just discovering the experience of the long term effects of the radiation, so please forgive me if my reply doesn't exactly fit your condition. Your condition is one of the long-term radiation effects. Thanks for listening and I sure hope that you are feeling better. Any replies are welcome.


cathyp's picture
Posts: 366
Joined: Dec 2009


So sorry to hear of you treatment side effects. I had rads in 1989 for Hodgkins and later was dx'd w/invasive ductal carcinoma, breast cancer. In jan 2008 I had a double mastectomy. There was some worry about healing but I had no problems. The doctors have recommended against reconstruction because of another major surgery and the healing issue. I am also in middle of figuring out the extent of radiation damage to my heart, valves and arteries. Do you have a long term effect specialist that you see? Best wishes,

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. 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 ho****e 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.

I am currently working on a book about the history of radiation for benign conditions, especially on children, and would be very interested to hear other’s stories.

Posts: 3
Joined: Jan 2010

Hi Garyn, I was treated with a month of radiation in 1967 and 2 chemo injections to follow. I too have a heart valve issue and the Dr's seem to be fine with doing a replacement. My concern is my chest is small and inward. There was a Dr in Abbington, PA that did a mechanical valve replacement a few years ago through the rib cage. I suffer with stenosis as well. I am 49. I was involved in sports and very active into my late 30's. I have had my thyroid removed, recovered from prostate cancer (removed) when I was 47. I have a long list of health issues, most worrying is asthma like episodes due to weight gain and my small lungs. We have alot to teach others and even Doctors. I was in the hospital for a blood clot last year, they could not figure why. They put me on Coumadin which iI have since stopped due to lack of health insurance.

My advice to you is to seek out as much information on a valve replacement and be positive in your daily routine, diet, exercise when you can and FAITH!

I hope to start a program with a local hospital to encourage cancer survivors to be active, I believe prayer from family, friends anddrive to be able to be normal and play sports has gotten me trhu so far.

God Bless,


Posts: 6
Joined: May 2010

Hi Garyn,

I had radiation/surgeries/chemo at 25 in 1992-95. I just found out that I also have heart issues, but from both the chemo & radiation. I have to have my mitral valve replaced. They told me my damaged valve was causing my "squeeze" of the heart to be reduced, Nonischemic cardiopathy is what he called it. The regurgitation of the valve puts too much blood back on the other side, which causes the scar tissue to form. My cardiologist put me on Coreg about 3 weeks ago to help with that issue.

Good Luck,


Posts: 3
Joined: Nov 2011

good luck Garyn,

I also had radiation in 1972, and needed a triple bypass and aortic valve in 2006 Congestive heart failure. Also a pacemaker in 2009. I feel great. I was 21 when went thru radiation upper mantle and inverted Y.

I am waiting for the "next" ordeal. lol

Gary, I hope you are doing well. If you have questions, please let me know. I have been though lots of stuff . Have 2 hearing aids because of radiation. I am 60....but don't yet feel it.....


Posts: 1
Joined: Jul 2013

I am 41 years old and have recently been told that I have severe aortic stenosis.  I had Hodgkins when I was 18 and also received chemo and radiation. Like you I am also being told that open heart surgery may not be a option for me and the Dr's are now exploring other surgery options including a fairly new procedure where they will enter through the groin area. 

Posts: 5
Joined: Sep 2009

Nice to meet everybody.  

I have aortic stenosis. going to need valve replacement in the near future.  doctor didnt say anything about NOT being able to do it.

I heard him mention alcification and arterial blockage, but most of the discussion centers around the valve.

i've also had schwanoma and renal carninoma.

very large thyroid nodules but non-cancerous so far, taking synthroid

numerous other aches and pains, wouldnt be surpirsed if more things develop

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