Longterm effects of radiation therapy

marycloe

Radiation Effects
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.

Mary

marycloe

mtiberio said:

What radiation has done to me
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.

Thanks,
Mike

Glad to be alive too
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.

Mary

cathyp

marycloe said:

Radiation Effects
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.

Mary

Breast Cancer, Cardiac Issues
Mary,

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,
Cathy

genek61

Long term effects of radiation
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,

Gene

UcanDOit

mtiberio said:

What radiation has done to me
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.

Thanks,
Mike

What radiation has done to me.....it kept me ALIVE!
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.

bluerose

HatTrick said:

Heart problems following radiation
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.

Check the chemo drugs you had for possible heart late effects
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

alpeaceh

Longterm effects of radiation therapy
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,

Andrea

2manyrads

marycloe said:

Radiation Effects
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.

Mary

Radiation 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.

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.

MarcyP

Bonebrake said:

Scheduled for Heart Valve Replacement and 3x bypass
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

Long term effect of radiation on the heart
Hi,
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

MarcyP said:

Long term effect of radiation on the heart
Hi,
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

Hi Marci
what are cobalt
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.

klas

longterm effects of radiation therapy
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.....

klas

mility

Radiation

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. 

Max Former Hodgkins Stage 3

UcanDOit said:

What radiation has done to me.....it kept me ALIVE!
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.

I'm With You

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.

max

.

slessurb

long term effects

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

delray16

radiation effecting my back

I had ovarian cancer 34 years ago and treated with 6 wks of radiation.  I now have been diagnosed with degenerative disc disease which is affecting my neck( with 5 discs) going down my right arm, also have 3 discs in my lower back with pain going down my right leg and also scoliosis.  The drs have treated me with injections in my neck and lower back and have tried all different types of medications for pain with no relief.   

When I first started seeing a Dr. about 2 yrs ago here in FL  I asked him if he thought it could be because of my radiation treatment way back when,  They told me no.

I think that all this started probably maybe 10yrs ago while working in a doctors office,  I thought it was just from working on the computer all the time.  

I would just like to hear if anyone else has had this or similiar problems after previous radiation treatment.

 

Max Former Hodgkins Stage 3

non-specific

Delray,

You don't give a lot of specifics, so I will respond only to generalities. Radiation, depending on where it is applied, seems to most often damage lung and heart tissue, and also breast. The most common radiation health questions that I have encountered during my time here is defenitely secondary breast cancers, hands down. Another common one is leukemia.

People (like me) get degerative spine problems from a lot of sources or reasons. I, for instance, have two collapsed disks, but have never received therapudic radiation, but my cause is known: traumatic injury. Sometimes it is spontanous: age related.

From learning radiation health in the Navy while a submariner, I would submit that your work computer had no role in it. You could sit on a desktop computer for 100 years and receive no significant radiation.

When doctors give a treatment, like chemo, or radiation, or a drug, or anything whatever, there is a statement applicable, such as is written on drug fact sheets:

Your doctor has perscribed this because the probable benefits outweigh the possible negative side-effects.

That is, doctors use the best tools available at the time.  No drug on earth,  just as no chemo and no radiation, has no negative potential side-effects. An asprin can kill some people (bleeding ulcers, etc), but it is one of the most wonderful drugs ever discovered in human history.

It was the same when you received the radiation you got:

You could have got no radiation and died 34 years ago, or have back problems today. Ovarian cancer, even today, is among the most deadly that there is. You were profoundly lucky to have been cured.

Prepping for prostate cancer treatment myself three years ago, I learned through study that radiation delivery has improved exponentially in the past 30 years, even in the last ten years. The machine and technology that was used on you then probably ceased to exist in the US decades ago, such that others needing radiation that you got then would have much more precise and less dangerous application.

My layman's, non-professional opinion,

max

mfurest

Follow up?

HI Gary, I was treated for HL in 93, six weeks of mantle field radiation. Other than my thyroid disappearing, I have had no long term effects than sinus issues, which everyone says is not related. Last October, I was told a small heart murmur was detected. They said it was a level 1 murmur. Today, I went to the Dr. with yet another sinus infection to be told my murmur is a 3 or 4 easily... Clearly this is a long term effect, and now I am having massive anxiety over the fact that it is getting worse and that it means I could need surgery. What ever happened with yours?

mfurest

mility said:

Radiation

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. 

update?

I'd love to know how this turned out...as I am recently diagnosed with the same.