long-term effects of radiation

rory
rory Member Posts: 30
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
When I was 21 I was diagnosed with Hodgkins. At that time the Drs. told me that I would have to undergo a splenectomy and mantle radiation. They didn't tell me that the treatment would damage my lungs, or cause hypothyroidism. I have now development heart atrial arrythymias requiring an AV Node ablation and pacemaker. What I don't know is whether the mantle radiation I received in 1974 caused the heart condition. Also, I am becoming concerned about other long-term complications and high risks from other cancers. What has been the experience of others? Has anybody ever researched this? Are there any studies or resources? Who do I go to for answers?
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Comments

  • mikek
    mikek Member Posts: 5
    #2
    Rory, I to recieved radiation of the mantle and had my spleen removed in 1974 at the age of 14. I have suffered from undergrowth of the chest and neck and have been told to be aware of possible heart problems. I came to this site in hopes of finding out what others like us have experienced.
  • rory
    rory Member Posts: 30
    #3
    mikek said:

    Rory, I to recieved radiation of the mantle and had my spleen removed in 1974 at the age of 14. I have suffered from undergrowth of the chest and neck and have been told to be aware of possible heart problems. I came to this site in hopes of finding out what others like us have experienced.

    Mike - I have done some research on medline for mantle radiation. Apparently, around the time you and I had treatment the radiation was more potent than it is today. Specific late effects appear to focus on lung damage, hypothyroidism, and heart problems. It is interesting the I have developed complications in all these areas. On Thursday this week I am going to see a Hemotologist regarding pain in my left upper chest. Apparently, my Doc believes I have an enlargement of the left breast. Maybe it is nothing, but I am a little stressed that it could be a second development of cancer - I pray that it isn't. What kind of complications have you had Mike?
  • mikek
    mikek Member Posts: 5
    #4
    rory said:

    Mike - I have done some research on medline for mantle radiation. Apparently, around the time you and I had treatment the radiation was more potent than it is today. Specific late effects appear to focus on lung damage, hypothyroidism, and heart problems. It is interesting the I have developed complications in all these areas. On Thursday this week I am going to see a Hemotologist regarding pain in my left upper chest. Apparently, my Doc believes I have an enlargement of the left breast. Maybe it is nothing, but I am a little stressed that it could be a second development of cancer - I pray that it isn't. What kind of complications have you had Mike?

    Good luck on your doctor visit. I hope that it is nothing. Sometimes the mental anguish is enough. All I have currently suffered from is the hypothyroid and lack of development of my chest/neck. I have had some minor heart problems but nothing to do at this time. I know that they radiated us with to much radiation but I think we were on the cutting edge of survival at the time and that is all they could do. Now,if the cure does not kill us.

    I try to live a fairly healthy life style. I move around alot, own a small farm so am always working outside there and bicycle when I can. I do feel a shortness of breath and my heart feels funny at times but again the doctor says keep take two aspirin and keep going. I wonder what the next few years will bring? Again Good Luck this week. Mike
  • rory
    rory Member Posts: 30
    #5
    mikek said:

    Good luck on your doctor visit. I hope that it is nothing. Sometimes the mental anguish is enough. All I have currently suffered from is the hypothyroid and lack of development of my chest/neck. I have had some minor heart problems but nothing to do at this time. I know that they radiated us with to much radiation but I think we were on the cutting edge of survival at the time and that is all they could do. Now,if the cure does not kill us.

    I try to live a fairly healthy life style. I move around alot, own a small farm so am always working outside there and bicycle when I can. I do feel a shortness of breath and my heart feels funny at times but again the doctor says keep take two aspirin and keep going. I wonder what the next few years will bring? Again Good Luck this week. Mike

    Mike: Keep aware of the heart stuff. I developed shortness of breath and thought it was my lungs since I knew I had some damage from the radiation scatter, but it turned out to be arrythymia's. It wasn't until my thyroid finally failed that I started to develop intense shortness of breath and realized it was my heart. Apparently, the atrial part of my heart was beating rapidly and screwing up the ventricle part which led to the loss of oxygen and shortness of breath. I went to a Dr. who tried to control the instances of the irregularity, but it didn't work. I had a stroke as a result of the atrial fibrillation. I have read recently that if the heart problem wasn't directly related to the radiation, it may have been caused by the hypothyroidism. From my point of view, working on a farm seems like it would be pretty relaxing. Although I live in the city, I own 44 acres of land that I inherited from my father. I have always dreamed of living there...
  • hawkl
    hawkl Member Posts: 1
    #6
    rory said:

    Mike: Keep aware of the heart stuff. I developed shortness of breath and thought it was my lungs since I knew I had some damage from the radiation scatter, but it turned out to be arrythymia's. It wasn't until my thyroid finally failed that I started to develop intense shortness of breath and realized it was my heart. Apparently, the atrial part of my heart was beating rapidly and screwing up the ventricle part which led to the loss of oxygen and shortness of breath. I went to a Dr. who tried to control the instances of the irregularity, but it didn't work. I had a stroke as a result of the atrial fibrillation. I have read recently that if the heart problem wasn't directly related to the radiation, it may have been caused by the hypothyroidism. From my point of view, working on a farm seems like it would be pretty relaxing. Although I live in the city, I own 44 acres of land that I inherited from my father. I have always dreamed of living there...

    Hi
    My name is Gavin I have went through Hodgkins disease and the treatment aswell as all the after affects. I have never talked to anyone about what I was going through or am going through.
    I was 20 when I first was diagnosed and had just became a Father. I had decided to be a man and get through it on my own. I'm just now finding out that this was not a great idea. I have just turned thirty and went through something worse than Chemo or Radiotherapy. My wife and I just lost a child. I was told after my treatment that I would never be able to have children ever again.
    This was devastating to us as we love children and hoped to have a brother or sister for my daughter. To our surprise 9 years later my wife became pregnant. "Unbeleivable". I got myself checked out yet again and found out that I was now able to produce children. My count wasn't great but it was enough. We were delighted. My wife got to nine weeks then we lost the baby. Totaly devastated. I beleive it is due to the radio or chemo perhaps both.
    Have you ever felt useless,pathetic,and a total burden to the people you love? If you or anyone else out there has any advice for me on this matter I would welcome it extreemly. Take Care.
  • mikek
    mikek Member Posts: 5
    #7
    hawkl said:

    Hi
    My name is Gavin I have went through Hodgkins disease and the treatment aswell as all the after affects. I have never talked to anyone about what I was going through or am going through.
    I was 20 when I first was diagnosed and had just became a Father. I had decided to be a man and get through it on my own. I'm just now finding out that this was not a great idea. I have just turned thirty and went through something worse than Chemo or Radiotherapy. My wife and I just lost a child. I was told after my treatment that I would never be able to have children ever again.
    This was devastating to us as we love children and hoped to have a brother or sister for my daughter. To our surprise 9 years later my wife became pregnant. "Unbeleivable". I got myself checked out yet again and found out that I was now able to produce children. My count wasn't great but it was enough. We were delighted. My wife got to nine weeks then we lost the baby. Totaly devastated. I beleive it is due to the radio or chemo perhaps both.
    Have you ever felt useless,pathetic,and a total burden to the people you love? If you or anyone else out there has any advice for me on this matter I would welcome it extreemly. Take Care.

    Gavin, I don't think you can blame yourself for the loss of your baby. I have heard that a miscarriage happens with a lot more frequency than you would think. I cannot imagine that making it any easier though. Sounds like you are only thirty years old and have time to continue your family.
  • rory
    rory Member Posts: 30
    #8
    hawkl said:

    Hi
    My name is Gavin I have went through Hodgkins disease and the treatment aswell as all the after affects. I have never talked to anyone about what I was going through or am going through.
    I was 20 when I first was diagnosed and had just became a Father. I had decided to be a man and get through it on my own. I'm just now finding out that this was not a great idea. I have just turned thirty and went through something worse than Chemo or Radiotherapy. My wife and I just lost a child. I was told after my treatment that I would never be able to have children ever again.
    This was devastating to us as we love children and hoped to have a brother or sister for my daughter. To our surprise 9 years later my wife became pregnant. "Unbeleivable". I got myself checked out yet again and found out that I was now able to produce children. My count wasn't great but it was enough. We were delighted. My wife got to nine weeks then we lost the baby. Totaly devastated. I beleive it is due to the radio or chemo perhaps both.
    Have you ever felt useless,pathetic,and a total burden to the people you love? If you or anyone else out there has any advice for me on this matter I would welcome it extreemly. Take Care.

    Gavin, I agree with Mike. Don't blame yourself. The Docs told me too that I may not have children. They also said that if I do have children that we had a high risk of them being retarded. Well..., my wife and I proved them wrong. Although, we had 3 miscarriages, we ended up with 5 normal sons. Early on, my wife and I discussed the possibilities as it was layed out by the Doctors, and decided to put in God's hands. Rory
  • tamis
    tamis Member Posts: 33
    #9
    hawkl said:

    Hi
    My name is Gavin I have went through Hodgkins disease and the treatment aswell as all the after affects. I have never talked to anyone about what I was going through or am going through.
    I was 20 when I first was diagnosed and had just became a Father. I had decided to be a man and get through it on my own. I'm just now finding out that this was not a great idea. I have just turned thirty and went through something worse than Chemo or Radiotherapy. My wife and I just lost a child. I was told after my treatment that I would never be able to have children ever again.
    This was devastating to us as we love children and hoped to have a brother or sister for my daughter. To our surprise 9 years later my wife became pregnant. "Unbeleivable". I got myself checked out yet again and found out that I was now able to produce children. My count wasn't great but it was enough. We were delighted. My wife got to nine weeks then we lost the baby. Totaly devastated. I beleive it is due to the radio or chemo perhaps both.
    Have you ever felt useless,pathetic,and a total burden to the people you love? If you or anyone else out there has any advice for me on this matter I would welcome it extreemly. Take Care.

    Gavin, I can relate to you with how you feel. You need to be strong and not put the blame on you. I am 28 with Hodgkins. I was diagnosed last July and under went several Chemo's and a Stem Cell Transplant and then radiation as well. I am now onto my second round of radiation. Anyway, the most devasting thing was I will now be infertile. I thank God everyday, that I was able to have my little girl who is only 2 when I did. If not, I would never have her. I always blame myself and feel so selfish that I can't not give my daughter a sibling, or my husband another child. It hurts the most. I have 2 sisters and brother and we have such a special bond and it makes me hurt more to know I can't do that for my daughter. I keep looking at my positives and what to be thankful for. I am so happy to have this little girl in my life and know that she's a blessing. There is nothing worse than to have something so precious taken from you. Don't give up on trying to have that baby! I am sorry to hear of your loss. don't ever blame yourself. Things happen for a reason, what those reason's are I'll never understand.
  • debraocn
    debraocn Member Posts: 1
    #10
    Rory:

    I've just joined this list but have some info on long term and late effects of treatment. If you know how to do medical research, look for articles by Steven Hancock, MD (Stanford University) or John Redman, MD (MD Anderson). They are both doing research on the consequences of treatment for HD. Dr. Hancock has done a study on the effect of radiation on the heart - damage to heart muscle, vagus nerve and valves. it is important to be followed by someone who knows about the long term effects of radiation therapy. Good luck

    Debra
  • rory
    rory Member Posts: 30
    #11
    debraocn said:

    Rory:

    I've just joined this list but have some info on long term and late effects of treatment. If you know how to do medical research, look for articles by Steven Hancock, MD (Stanford University) or John Redman, MD (MD Anderson). They are both doing research on the consequences of treatment for HD. Dr. Hancock has done a study on the effect of radiation on the heart - damage to heart muscle, vagus nerve and valves. it is important to be followed by someone who knows about the long term effects of radiation therapy. Good luck

    Debra

    Thanks alot Debra for the information. Apparently, the radiation I had appears to have been responsible for a lot secondary stuff. I didn't realize the long-term affects that the treatment would have, nor did the physicians. It is great that they have made a lot of changes in the treatment protocol since I was treated in 1974. But hey, if they hadn't treated me then I may not be here today to enjoy my wonderful family and grandchildren even though I have had some bumps in the road along the way. Rory
  • mindycarey
    mindycarey Member Posts: 4
    #12
    Hi Rory. I just joined the group and was reading your posting. I was treated for Hodgkins in 1986 with mantel radiation.I also recieved radiation to my abdomen to "sterilze" my lymph nodes there. I was 16 at the time. I have had no recurrence of the Hodgkins but have had several other problems associated with the treatment. I have had pneumonia several times, apparently from the spleenectomy during staging. I also have some carotid stenosis in my left carotid artery. I also have some mid sternal pulmonary fibrosis, though that has not really been causing me any problems thus far. I am currently 31 and have 2 children. A daughter(Samantha) 9 and a son (Nicholas) who will be 4 in March. I have just recently been diagnosed with breast cancer. I found the lump in my left breast New Years eve. Had a needle biopsy on 1/02/01. Mammogram with ultrasound on 1/04/01. Lumpectomy with lymph node dissection and port-a cath insertion 1/12/01. And I just recieved my first chemotherapy treatment on 1/25/01. I never recieved chemo for treatment for the Hodkins but I really had a bad time of it. I am hoping that the chemo dosen't do me in. It is really interesting to hear that there others out there who are suffering form the treatment for the Hodgkins and the long term effects of radiation. I guess I was feeling pretty "cocky" about not having the any re- occurence of cancer even though I have had other medical problems associated with the long term effects of the radiation and the spleenectomy. I guess I just never thought that I would come down with cancer again. I always just asumed that I would end up getting an infection or something that I could get rid of. I would appreciate any feed back that this group could give me. Thanks Mindy Carey
  • rory
    rory Member Posts: 30
    #13
    mindycarey said:

    Hi Rory. I just joined the group and was reading your posting. I was treated for Hodgkins in 1986 with mantel radiation.I also recieved radiation to my abdomen to "sterilze" my lymph nodes there. I was 16 at the time. I have had no recurrence of the Hodgkins but have had several other problems associated with the treatment. I have had pneumonia several times, apparently from the spleenectomy during staging. I also have some carotid stenosis in my left carotid artery. I also have some mid sternal pulmonary fibrosis, though that has not really been causing me any problems thus far. I am currently 31 and have 2 children. A daughter(Samantha) 9 and a son (Nicholas) who will be 4 in March. I have just recently been diagnosed with breast cancer. I found the lump in my left breast New Years eve. Had a needle biopsy on 1/02/01. Mammogram with ultrasound on 1/04/01. Lumpectomy with lymph node dissection and port-a cath insertion 1/12/01. And I just recieved my first chemotherapy treatment on 1/25/01. I never recieved chemo for treatment for the Hodkins but I really had a bad time of it. I am hoping that the chemo dosen't do me in. It is really interesting to hear that there others out there who are suffering form the treatment for the Hodgkins and the long term effects of radiation. I guess I was feeling pretty "cocky" about not having the any re- occurence of cancer even though I have had other medical problems associated with the long term effects of the radiation and the spleenectomy. I guess I just never thought that I would come down with cancer again. I always just asumed that I would end up getting an infection or something that I could get rid of. I would appreciate any feed back that this group could give me. Thanks Mindy Carey

    Hi Mindy ~ I have been learning alot about the late effects of the treatment we had. Unfortunately, secondary cancers is a reality. When I saw my onc recently, she listed leukemia, breast cancer, sarcomas, lung cancer, and NHL as known cancers related to radiation. I had a large mediastinal mass removed from my chest and radiation in 1974 (4660 rads to mantle ant./post. and 3000 abdomen ant./post.)and spleenectomy. Late effects are lung damage, heart damage, hypothyroidism, and just recently venous thrombosis of the left arm due to radiation fibrosis of the subclavian vein just above the heart. Currently, I have a small spot on the right lung that they are watching really close. Although it is not found to be PET active, I have to have CT scans every 3 months for the next two years. What a pit!!

    I am sorry to hear about your lastest challenge. You made it through this before, you can do it again. I understand that the chemo is not as bad as it use to be. How is it going with the chemo? Are you doing Okay? Many healing thoughts are sent your way.

    There are two lists that are pretty active and have provided me with a lot of information. The first list is: Listserv@listserv.acor.org - it provides alot information from others with active cancers and a digest of responses to questions like the effects of chemo.

    The second list that I review alot is LT-Survivors@listserv.acor.org. This list has about 300+, and growing daily, HD survivors who communicate with each other, support each other, and share information on late effects continuously. It is also monitor by Stanford MDs who respond to questions posed. They have really been a help to me. Linda Zame is the co-creator of the list and is extremely knowledgable herself.

    You hang in there. Join the two list above, you won't be disappointed. Good Luck!

    Rory
  • 36walter
    36walter Member Posts: 5
    #14
    I have a whole in the sac that holds the heart and I understand that yes, the radiation causes this type of damage. I also have a heart murmur that they are not sure whether radiation caused it. The thing is, I have had a lot of the 'long term' side effects since remission in 1978, but I pause and think, okay, so if I didn't have the treatment would I even be alive? I think no.. so I try to bear with the side effects and enjoy my 'borrowed time'.
    RE: Long term side effects, I go to Dana Farber in Boston for follow up appts. and they are great resources of info. Does the place where you were treated have a survivor's clinic? Personally, I find so much comfort in knowing that all my symptoms are real and legitimate and that usually outweighs the severity of them. (thyroid, premature menopause, the heart thing) etc.
    Hope this helps and I don't sound preachy!
    :-)
  • chris9655
    chris9655 Member Posts: 2
    #15
    mikek said:

    Good luck on your doctor visit. I hope that it is nothing. Sometimes the mental anguish is enough. All I have currently suffered from is the hypothyroid and lack of development of my chest/neck. I have had some minor heart problems but nothing to do at this time. I know that they radiated us with to much radiation but I think we were on the cutting edge of survival at the time and that is all they could do. Now,if the cure does not kill us.

    I try to live a fairly healthy life style. I move around alot, own a small farm so am always working outside there and bicycle when I can. I do feel a shortness of breath and my heart feels funny at times but again the doctor says keep take two aspirin and keep going. I wonder what the next few years will bring? Again Good Luck this week. Mike

    my god, i am just finishing up with abvd chemo, 16 treatments, and my doctor said there is a possibility of radiation when i'm done. i didnt know so many things can go wrong from radiation but i definitely will tell my doctor that i won't go through it. am i being rediculous?? can someone put my mind at ease please. i apologize, i am a little freaked out. i'm 24 and this has been a really long and arduous road for me. i'm sure you all understand.
    thanks
    chris
  • becca12056
    becca12056 Member Posts: 10
    #16
    mikek said:

    Rory, I to recieved radiation of the mantle and had my spleen removed in 1974 at the age of 14. I have suffered from undergrowth of the chest and neck and have been told to be aware of possible heart problems. I came to this site in hopes of finding out what others like us have experienced.

    Mikek...What do you mean "undergrowth to the chest and neck"? I had HD 27 years ago.
    Becky
  • becca12056
    becca12056 Member Posts: 10
    #17
    hawkl said:

    Hi
    My name is Gavin I have went through Hodgkins disease and the treatment aswell as all the after affects. I have never talked to anyone about what I was going through or am going through.
    I was 20 when I first was diagnosed and had just became a Father. I had decided to be a man and get through it on my own. I'm just now finding out that this was not a great idea. I have just turned thirty and went through something worse than Chemo or Radiotherapy. My wife and I just lost a child. I was told after my treatment that I would never be able to have children ever again.
    This was devastating to us as we love children and hoped to have a brother or sister for my daughter. To our surprise 9 years later my wife became pregnant. "Unbeleivable". I got myself checked out yet again and found out that I was now able to produce children. My count wasn't great but it was enough. We were delighted. My wife got to nine weeks then we lost the baby. Totaly devastated. I beleive it is due to the radio or chemo perhaps both.
    Have you ever felt useless,pathetic,and a total burden to the people you love? If you or anyone else out there has any advice for me on this matter I would welcome it extreemly. Take Care.

    Hawkl,
    I don't think the loss of your child was due to the radiaiation. As I understand it...since a man produces sperm all the time and environmental factors don't affect their offspring as much as women who are born with all their eggs. I may be wrong, but I learned this in a college genetics class.
    Becky
  • becca12056
    becca12056 Member Posts: 10
    #18
    chris9655 said:

    my god, i am just finishing up with abvd chemo, 16 treatments, and my doctor said there is a possibility of radiation when i'm done. i didnt know so many things can go wrong from radiation but i definitely will tell my doctor that i won't go through it. am i being rediculous?? can someone put my mind at ease please. i apologize, i am a little freaked out. i'm 24 and this has been a really long and arduous road for me. i'm sure you all understand.
    thanks
    chris

    Chris, I will try to put your mind at ease. I am 47 and had HD 27 years ago. I had radiation at the time (when they use to really zap it to you). I have had no recurrence and no problems from the radiation except for a few thyroid nodules and a rapid heart beat. I live a very normal, hectic life. After HD I had two kids, graduated from college, and have been teaching very active 5th graders for 15 years! My kids are involved in everything and I am too! The rad. does have side effects but I figure it saved my life. I am cautious and keep myself checked, but live a very normal, full life. Email me anytime you like.
    Becky
  • Jazzie
    Jazzie Member Posts: 1
    #19
    becca12056 said:

    Mikek...What do you mean "undergrowth to the chest and neck"? I had HD 27 years ago.
    Becky

    Becca, you indicated you are longterm survivor who had radiation therapy. At 17 years, I have various minor but annoying health issues. What sort of health issues do you have now? thanks
  • mrosen
    mrosen Member Posts: 1
    #20
    36walter said:

    I have a whole in the sac that holds the heart and I understand that yes, the radiation causes this type of damage. I also have a heart murmur that they are not sure whether radiation caused it. The thing is, I have had a lot of the 'long term' side effects since remission in 1978, but I pause and think, okay, so if I didn't have the treatment would I even be alive? I think no.. so I try to bear with the side effects and enjoy my 'borrowed time'.
    RE: Long term side effects, I go to Dana Farber in Boston for follow up appts. and they are great resources of info. Does the place where you were treated have a survivor's clinic? Personally, I find so much comfort in knowing that all my symptoms are real and legitimate and that usually outweighs the severity of them. (thyroid, premature menopause, the heart thing) etc.
    Hope this helps and I don't sound preachy!
    :-)

    in addition to hypothyroidism, secondary cancers and heart issues, does anyone know if low hemoglobin/low energy and depleted immune function are also long term effects of mantle radiation or ABVD? I'm five years out.
  • dmrichardson
    dmrichardson Member Posts: 1
    #21
    36walter said:

    I have a whole in the sac that holds the heart and I understand that yes, the radiation causes this type of damage. I also have a heart murmur that they are not sure whether radiation caused it. The thing is, I have had a lot of the 'long term' side effects since remission in 1978, but I pause and think, okay, so if I didn't have the treatment would I even be alive? I think no.. so I try to bear with the side effects and enjoy my 'borrowed time'.
    RE: Long term side effects, I go to Dana Farber in Boston for follow up appts. and they are great resources of info. Does the place where you were treated have a survivor's clinic? Personally, I find so much comfort in knowing that all my symptoms are real and legitimate and that usually outweighs the severity of them. (thyroid, premature menopause, the heart thing) etc.
    Hope this helps and I don't sound preachy!
    :-)

    Hi there,

    Just registered at this web site and noticed your discussions. I thought it was me. Except that I have been in remission since 1982.
    I won't make the response long in the event you are no longer following this discussion board.

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