Did your Radiation Oncologist tell you that where the radiation hit is now, essentially, 20 yrs olde

twowings19
twowings19 Member Posts: 3
in Long-Term Survivors #1

Fist time posting here. I recieved my 54th and last treatment of radiation for Hodgkins Disease on April 8th, 1986. So that would be about 27 years ago when I was 25 years old, newly divorced and the mother of two toddlers. I have not had many problems, actually, since the radiation. I did go into menopause about 3 years later, which was a tailspin for me and led to some rather trying years as by then I didn't have any regular doctor and we couldn't figure out what was the matter with me. Menopause at 28 isn't something I was told could happen from having both upper and lower mantles radiated. For years it was assumed that because my doctor didn't move my ovaries over the radiation had zapped them and made them sterile. Then when I was in my forties I finally had adequate insurance and a good endocrinologist who discovered problems with my thyroid. Once on hormone therapy I suddenly began having menses again, after a 20 year of not. LOL! A few years ago I had a second menopause. I was diagnosed with fibromyalgia in 2004, and about once every five years spend a night in the hospital when I get the flu so bad my hiatel hernia spasms out and won't stop so I become excisevly dehydrated. But the only other time I spent time in the hospital (after the initial removal of the tumor and splenectomy, etc to stage the cancer) was when I had my gall bladder removed, so I know I am very lucky, especially after reading so much on here about others.

My question, however, is if anyone else was told, after they received the radiation treatment, that those areas of your body that were zapped were, essentially, about 20 years older than the rest of your body? It was no big deal when i was in my 20s but now that I am in my 50s it is making me sweat. I know my heart muscle is thicker, I know I live on rantidine and eat it like candy because I have a very low toleration for any sort of acidity in my stomach but I am growing much more concerned regarding my heart and lungs. What has anyone else been told, if anything, regarding how radiation ages the internal organs? 

Thanks, and all the best to everyone.

Comments

  • cathyp
    cathyp Member Posts: 376 Member
    #2
    Hi twowings,
    It sounds that

    Hi twowings,

    It sounds that you are aware of long term effects from our treatments.  Did you know there are specialists who follow patients like us and there are survivorship guidelins to follow our care.  It list recommended screening for secondary cancers, cardiac and pulmonary issues to name a few.  Here are the links: http://www.survivorshipguidelines.org/ and http://www.ped-onc.org/treatment/surclinics.html.

    Regarding radiation and how it effects our bodies, there is a multitude of ways.  It never stops changing our internal organs including our skin (watch out for basal cell carcinomas).  Have you read the postings on this website under "Long Term Effects from Treatments".  As a survivor, you'll see in the guidelines I mentioned EKG's  and stress echos should be done since the ending of our treatments.  Lung Functions tests are done, mammograms and Breast MRIS's etc.  It's so helpful to see a LT Survivor Clinic and have them manage your followup care.

    Good Luck with everything,

    Cathy  HD 1989- RADS  HD 1994- ABVD   IDC 2007- DBL MX

  • Valjo06
    Valjo06 Member Posts: 17
    #3
    Hi twowings19

    I was 21 when I was undergoing rads, I don't remember a whole lot (memory is first to go...ha) but I DO remember my oncologist mentioning that this could cut 5 to 10 years off my life.  I thought that was strange.  I didn't see very many side effects until my early 30s and then it started slowly.  Cathyp is a "wealth of information" and she is right, look on long term survivors, etc.,  There is alot of info and you also see what alot of others have deal with.  I also see a heart doc every 6 months. I developed SVT.  And I got lucky that this cardiologist knows that rads can do heart damage so he wants to keep a 6 month recheck on me. It's wonderful if you find a doc that will acknowledge the damage rads can do and will help you with issues.  We don't have any long term docs in this area (I live near st louis over on the illinois side).  I do alot of exercising and yoga and deep tissue massages (once a month).  I think if I didn't do these things I would be in worse shape.  I have neuropathy, gerd, have a spinal fusion due to broken vetrabra (nuerosurgeon said it's not 100% positive but the rads could have caused this over time).  Thru tests, scans, etc., due to pains and from other docs who've done surgeries on me (gyn/ob and neurosurgeon believe that) they've told me I'm loaded with scar tissue; they believe it to be from the surgeries and the rads.  I've been to many docs over these last 30 years that don't know a thing about rad damage and don't much acknowledge it and act like I'm crazy. then I get lucky and find some that care and will check me out or send me to someone they think will.  My ent saw a lump on my throat at a checkup for sinuses, and immediately set me up to remove it. Thank God it was a cyst.  But docs like that are great; those that know the history and want to make sure it's not cancer returning.  I think you just have to get lucky to find those docs.  I also have had basil cell removed, so Cathy is right, you need to see dermatologist once a year; I had no idea I had it, was just doing a normal check.  The gerd has become much worse as I age; this week I get the test where they put the tube down the throat because my issues have become bad in the last 6 months, so he's checking to make sure it's nothing major.  My brother who was younger than me died of colon cancer about 3 years ago, so I need a colonoscopy too.  It's a pain doing all these tests, but I'd rather be safe than sorry.  I also dont' breathe as well as I used too.  I've become a very shallow breather.  Doc thinks its from all the damage from rads to my lungs. Capacity is very limited.  So as you can see, alot of same issues that you and lots of others have.  I wish you good health and keep constant on checking with your doc when you feel a concern.  I saw 14 docs in 7 years before anyone would catch that I had a broken vetebrae.  I knew something was wrong and I just kept pursuing it.  One doc told me I was nuts that there was nothing wrong and gave me a prescription for valium; I wanted to reach across and punch him.  LOL.  Take care, be well, be safe, healthy and happy. 

  • twowings19
    twowings19 Member Posts: 3
    #4
    cathyp said:

    Hi twowings,
    It sounds that

    Hi twowings,

    It sounds that you are aware of long term effects from our treatments.  Did you know there are specialists who follow patients like us and there are survivorship guidelins to follow our care.  It list recommended screening for secondary cancers, cardiac and pulmonary issues to name a few.  Here are the links: http://www.survivorshipguidelines.org/ and http://www.ped-onc.org/treatment/surclinics.html.

    Regarding radiation and how it effects our bodies, there is a multitude of ways.  It never stops changing our internal organs including our skin (watch out for basal cell carcinomas).  Have you read the postings on this website under "Long Term Effects from Treatments".  As a survivor, you'll see in the guidelines I mentioned EKG's  and stress echos should be done since the ending of our treatments.  Lung Functions tests are done, mammograms and Breast MRIS's etc.  It's so helpful to see a LT Survivor Clinic and have them manage your followup care.

    Good Luck with everything,

    Cathy  HD 1989- RADS  HD 1994- ABVD   IDC 2007- DBL MX

    Childhood cancer? Am I missing the point?

    Hi, thank-you so much for taking the time to reply to me. I did go to that site when I read on someone else's post you recommending it. I am not quite sure what it offers to people who were not children when they got cancer. I checked out the closest long term survivor clinic/support group and it was at Dornbecher Children's Hospital and specifically said "We provide comprehensive care and support to survivors of childhood cancer, including anyone under age 30 who has been cancer-free and off treatment for at least two years. The clinic is held Friday afternoons." So, it really didn't sound open to a 52 year old woman who got cancer in her mid 20s.  But thank-you for the other suggestions! It is greatly appreciated. 

  • twowings19
    twowings19 Member Posts: 3
    #5
    Valjo06 said:

    Hi twowings19

    I was 21 when I was undergoing rads, I don't remember a whole lot (memory is first to go...ha) but I DO remember my oncologist mentioning that this could cut 5 to 10 years off my life.  I thought that was strange.  I didn't see very many side effects until my early 30s and then it started slowly.  Cathyp is a "wealth of information" and she is right, look on long term survivors, etc.,  There is alot of info and you also see what alot of others have deal with.  I also see a heart doc every 6 months. I developed SVT.  And I got lucky that this cardiologist knows that rads can do heart damage so he wants to keep a 6 month recheck on me. It's wonderful if you find a doc that will acknowledge the damage rads can do and will help you with issues.  We don't have any long term docs in this area (I live near st louis over on the illinois side).  I do alot of exercising and yoga and deep tissue massages (once a month).  I think if I didn't do these things I would be in worse shape.  I have neuropathy, gerd, have a spinal fusion due to broken vetrabra (nuerosurgeon said it's not 100% positive but the rads could have caused this over time).  Thru tests, scans, etc., due to pains and from other docs who've done surgeries on me (gyn/ob and neurosurgeon believe that) they've told me I'm loaded with scar tissue; they believe it to be from the surgeries and the rads.  I've been to many docs over these last 30 years that don't know a thing about rad damage and don't much acknowledge it and act like I'm crazy. then I get lucky and find some that care and will check me out or send me to someone they think will.  My ent saw a lump on my throat at a checkup for sinuses, and immediately set me up to remove it. Thank God it was a cyst.  But docs like that are great; those that know the history and want to make sure it's not cancer returning.  I think you just have to get lucky to find those docs.  I also have had basil cell removed, so Cathy is right, you need to see dermatologist once a year; I had no idea I had it, was just doing a normal check.  The gerd has become much worse as I age; this week I get the test where they put the tube down the throat because my issues have become bad in the last 6 months, so he's checking to make sure it's nothing major.  My brother who was younger than me died of colon cancer about 3 years ago, so I need a colonoscopy too.  It's a pain doing all these tests, but I'd rather be safe than sorry.  I also dont' breathe as well as I used too.  I've become a very shallow breather.  Doc thinks its from all the damage from rads to my lungs. Capacity is very limited.  So as you can see, alot of same issues that you and lots of others have.  I wish you good health and keep constant on checking with your doc when you feel a concern.  I saw 14 docs in 7 years before anyone would catch that I had a broken vetebrae.  I knew something was wrong and I just kept pursuing it.  One doc told me I was nuts that there was nothing wrong and gave me a prescription for valium; I wanted to reach across and punch him.  LOL.  Take care, be well, be safe, healthy and happy. 

    Hello, Valjo06

    I have been very lucky. I do have a very, very good GP who looks out for me like a hawk. He researches extensively to make sure that we are on track with testing, etc, and has never poo-poohed any of my concerns. So, that is good. I just am getting to the age, now, when those few years that the radiation possibly cut off from the "end of my loife" are looming closer and closer! LOL! I guess I can sign on for another round of tests to see if I really do have a heart and lungs of a 70 year old in this 50+ year old body. But it is one of those things. My mom always cautioned me to be sure I want the answer before I ask the question.

  • sherry84
    sherry84 Member Posts: 16
    #6
    twowings19 said:

    Hello, Valjo06

    I have been very lucky. I do have a very, very good GP who looks out for me like a hawk. He researches extensively to make sure that we are on track with testing, etc, and has never poo-poohed any of my concerns. So, that is good. I just am getting to the age, now, when those few years that the radiation possibly cut off from the "end of my loife" are looming closer and closer! LOL! I guess I can sign on for another round of tests to see if I really do have a heart and lungs of a 70 year old in this 50+ year old body. But it is one of those things. My mom always cautioned me to be sure I want the answer before I ask the question.

    Hi twowings19

    I was diagnosed with hodgkin's at 26 in 1984 and received chemo and radiation as well. My onc Drs never told me anything about what I could look forward to in terms of delayed side effect except that I had a 50/50 chance of my period stopping (which never happened) and thyroid disease. 3 years later, I mysteriously developed difficulty swallowing for 6 months. That was such a scary time not knowing what was going on with my body. I went to every specialist under the sun but no one could figure out why, so of course, they wanted to send me to a therapist. I felt as Valjo felt when they wanted to give her valium. Years later, it was thought to be a delayed side effect from the radiation since my throat had been so compromised during treatment. My fiance then, since husband, reminded me that my cousin who went through much treatment for hodgkin's back aound the late 60's/early 70's told me that I will develop medical problems and no one will know what it is so try to remember, it is probably from the treatment. I think he had a wonderful progressive Dr who took time out to explain these things to him.

    It sounds like you are fortunate to have a good GP who will really listen to you and is on top of the reseach.

    In  1996, I developed hypo thyroid disease so that wasn't a shock. Then in 2000, that is when alot of the side effect started that I didn't know I was prone to. I think that's called baptism by fire. By 2003, I needed bypass and a new aortic valve. I since have developed other issues from radiation but am now informed and better prepared psychologically. I now go to a late effects clinic for adult survivors of pediatric cancers and am followed very carefully (which I learned about from others on this site). I believe CathyP's list provides survivorship guidelines probably similar to the clinic I go to. The tests can be tiresome but they are so important since whatever conditions you may develop in the future will be picked up at the earliest stage and addressed instead of progressing to where it becomes very serious and difficult to treat.

    Take care, Sherry

  • cathyp
    cathyp Member Posts: 376 Member
    #7
    twowings19 said:

    Childhood cancer? Am I missing the point?

    Hi, thank-you so much for taking the time to reply to me. I did go to that site when I read on someone else's post you recommending it. I am not quite sure what it offers to people who were not children when they got cancer. I checked out the closest long term survivor clinic/support group and it was at Dornbecher Children's Hospital and specifically said "We provide comprehensive care and support to survivors of childhood cancer, including anyone under age 30 who has been cancer-free and off treatment for at least two years. The clinic is held Friday afternoons." So, it really didn't sound open to a 52 year old woman who got cancer in her mid 20s.  But thank-you for the other suggestions! It is greatly appreciated. 

    Call the clinic!

    Two Wings,

    I meant to add to my post to not be put off by the pediatric cancer oncology term.  I was 29 when first dx'd.  On the MSKCC listing it said for survivors of childhood cancer, they agreed to see me. They see many survivors dx'd as a young adults.  If there is a clinic listed near you...call.  You never know until you ask them specicfically.  As you know HD hits many pediatric aged patients as well as young adults.  Most of the adult survivors I know are seen at these clinics. 

    Good Luck,

    Cathy

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