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Radiation

juliegljuliegl Member Posts: 31
edited February 2013 in General discussion
Just started radiation today. I really don't want to do it and was wondering if anyone else felt the same when they started. I just want to quit. I'm scared that it will leave me with lymphodema as the radiation goes all the way up to my neck targeting nodes in my neck and chest. Any one else felt like this?

Comments

  • Leonie MooreLeonie Moore Member Posts: 1,470
    edited March 2015

    Firstly let me welcome you to the site.  I hear your concerns.  The first time I was heading off for radiation treatment (8 hours drive and 7 weeks away from home) I felt so terrified.  This was in December 2006.  I had experienced surgery, pain, illness before in my life but this was something "unknown".  My surgeon at the time said to view the whole experience as an extended holiday.  As I had never had one of these I thought "Why not".  I did arm myself with loads of info from "someone who had gone before me".  Then when I had to return to Brisbane for a second round of radiation in Feb 2011, I felt okay with it all.  Yes second time around I was warned that I was at high risk of lymphodema as they were radiating the same area again.  I too had radiation to my neck and all of my left shoulder.  It is quite funny-  whenever I have a massage with a new service provider they are astounded with my left shoulder.  Not sure what they mean "Holy hell your left shoulder is a mess".  I figure it still works okay so that's alright.  It must be that all the muscle is "mutilated" or stiff or whatever who knows.  Yes I did prove them wrong with the lymphodema - for a while.  I now suffer with mild lymphodema - and I manage it.  Right from the beginning I have had regular lymphatic drainage massages - to keep "it" at bay.  Now I manage the problem with regular self massages, compression sleeve and more regular lymphatic drainage massages.  It can be a nuisance with fitting clothes etc.  There are people worst off than myself so I am grateful that I can manage it.  If I feel self conscious then I just camoflauge the arm with my compression sleeve and long sleeved clothes.  What helped me through radiation therapy was : taking really good care of myself through diet, moisturising, rest and saying NO to whatever and whoever when I got tired.  Wearing only cotton clothing whilst having radiation therapy and until the "burns" heal will make your life much more bearable.  Each day I put a smile on my face, some nice colourful clothes and a bright lipstick before heading off to the clinic.  It made me feel good and I like to think that I brightened up someone else's day as well.  Take care and before you know it - finished!!!!!!   Yah!!!XLeonie

  • juliegljuliegl Member Posts: 31
    edited March 2015
    Thanks, I just was a borderline case and wished I'd refused it now. I can't believe you had to endure this twice Leonie. It makes me think what's the point. I've already had a mastectomy and 24 weeks of chemo. I wished I'd said no.

    Will meet with the oncologist next week and see if there is any risk in stopping.

    thanks again
  • jandy23jandy23 Member Posts: 234
    edited March 2015

    Julie, I know what you mean. It feels so counter intuitive doesn't it - being zapped with radiation when we've already had cancer. I used lay there under the big machine wondering whether the buzzing radiation was doing me more harm than good. However, I did complete my 30 sessions. It was a drag but I was lucky I didn't suffer any major side-effects. I only had my lump removed though so I expect your case is different. I would ask the oncologist to give you some recurrance rates for if you do have it and if you don't. There is an online program oncologists use - Adjuvant online - to work this out. If the benefit isnt much you might want to stop. Ultimately it is your decision. But just make sure it is an informed one. Good luck. Janet

     

  • juliegljuliegl Member Posts: 31
    edited March 2015
    Just wondering what your side effects are adean? My specialist saw me today and was very comforting. She went over the numbers again and shed more light on why they think I needed it. So there is a suspicious looking lymph node in my chest and they can't operate on it. So radiation has a good chance of getting rid of any cancer cells in there that refused to succumb to chemo. The chance of recurrence goes from 15% to 5% and lymphodema from 1/8 to 1/7. So I feel much better about it all now.
    Thanks for your comments. If you could shed light on your radiation experiences and long term side effects that would be great.
    Thanks
    Julie
  • juliegljuliegl Member Posts: 31
    edited March 2015
    Just wondering what your side effects are adean? My specialist saw me today and was very comforting. She went over the numbers again and shed more light on why they think I needed it. So there is a suspicious looking lymph node in my chest and they can't operate on it. So radiation has a good chance of getting rid of any cancer cells in there that refused to succumb to chemo. The chance of recurrence goes from 15% to 5% and lymphodema from 1/8 to 1/7. So I feel much better about it all now.
    Thanks for your comments. If you could shed light on your radiation experiences and long term side effects that would be great.
    Thanks
    Julie
  • juliegljuliegl Member Posts: 31
    edited March 2015
    Just wondering what your side effects are adean? My specialist saw me today and was very comforting. She went over the numbers again and shed more light on why they think I needed it. So there is a suspicious looking lymph node in my chest and they can't operate on it. So radiation has a good chance of getting rid of any cancer cells in there that refused to succumb to chemo. The chance of recurrence goes from 15% to 5% and lymphodema from 1/8 to 1/7. So I feel much better about it all now.
    Thanks for your comments. If you could shed light on your radiation experiences and long term side effects that would be great.
    Thanks
    Julie
  • pisces_taspisces_tas Member Posts: 474
    edited March 2015

     Hi Julie,

    Such good advice from others and you have talked to the specialist again to get more facts.

    I had a lumpectomy on the right side in' 98 ( 11 nodes removed, one had cancer ), and a lumpectomy on the left side in 2003. ( sentinel node only removed and was clear ) I had radiation both times, and chemo the first time. So radiation to both sides of the chest and bottom half of the axillas.

    I have mild lymph drainage problems. I do self massage daily. There are different techniques slightly, but from what I know:

    The main drainage lymph duct  drains in the LEFT side of the neck, near the clavicle. It takes lymph from the lower body, (ie both legs), left arm  some abdomen and back left shoulder blade area, I think.

     The RIGHT lymph duct drains into the right side of the neck, and it takes drainage from the right arm and abdomen and back areas.

    SO, the left side takes more? Maybe that is because most people are right handed perhaps?

    You can google heaps on lymph anatomy, which, for me was important to understand HOW it works and drains etc.

    Gentle exercise, water therapy, tai chi.. etc all help to keep the lymph circulating also and not pooling in one spot. After surgery you can imagine it may pool..which in my case it did, although it was a " mild " case, to me it was still a problem to overcome and adjust to. In time the lymph vessels can  grow some new pathways to help drainage etc.

     I also had severe  flushing ( vasodilation of blood vessels ) after the first chemo. Doing too much when that is happening.. is in hindsight.. not a great idea.. LOL Take it easy for now especially.

    When travelling on a plane, or anywhere: I take it s l o w l y ..do self massage and breathing before flying. I have a bag on wheels..so I do not have to carry sustained weight; even 2 kilos can strain etc.. especially early on.

    To most people I look ok.. but I feel in my arm the lymph and swelling comes up if I do too much at once. There is still a lot of ignorance in the lay community and medical community about lymph issues I feel.

      I did feel somewhat " ignored and abandoned " by some of my concerns by " professionals" and consequently.. I feel I did TOO MUCH, when in hindsight I wish I had stopped and assessed things, and had more understanding and advice.. eg work issues.I think I was in DENIAL about some things also at the time. Anyway.. what is done is done.  The body tries to heal itself I think, but that may take some time, after surgery and then radiation on top of it.

    The more you strain and push the lymph system.. the worse it can be, so..learning to do things slowly, gently and carefully was not easy for me initially. Being overweight and your lifestyle may affect things. Also.. after menopause and the ageing process, may effect things slightly too.

    Using gloves when gardening etc.. and keeping skin moisturized etc.. can  help stop skin infections.

     I have had scanning laser also, which I feel has helped my scars to soften, and reduce discomfort and aches and pains, and some  swelling I had. I  do tend to get get thick keloid scars. I " pace " myself now and am good at pottering. I do a bit each day etc.. I have slowed down a lot..but am now soon to be 57. I was 42 and busy time of life then.

    Approximately 70% are superficial lymphatic capillaries located  just under, the skin. The remaining 30%, which are known as deep lymphatic capillaries, surround most of the body’s organs. The deep ones can be stimulated only by Yoga. Like veins, the lymphatic vessels, which are known as lymphangions, have one-way valves to prevent any backward flow.

    The lymphatic system drainage is organized into two separate, and very unequal drainage areas. The right drainage area clears the right arm and chest. The left drainage area clears all of the other areas of the body including both legs, the lower trunk upper left of the chest, and the left arm.


     I have BP taken on left arm, but I prefer manual not with the machine, to reduce amount of time arm is compressed.

    Any SUDDEN, SUSTAINED, PROLONGED, REPETITIVE movements.. can put a strain on the lymph, especially after surgery and radiation and depending on where it is too I guess. Everyone is different.

    So ..take it easy.. " slowly, gently, carefully " is my motto these days.

    Listen to your body, find a GOOD massage person to show you how to do manual lymphatic drainage and slow breathing. The lymph vessels pulsate   SLOWLY and have one way valves, like veins, I think.. They contract.. about 10 times a minute; where the blood vessels contract 70 or more etc.

    Maybe the radiation can be adjusted slightly..so the node  area is done.. but maybe not too far around the side ?..etc

    It is good you are asking questions and getting  answers. I think it helps with the huge emotional journey we  go on after a diagnosis.

     Keep searching,   all the best, Kathy.

  • pisces_taspisces_tas Member Posts: 474
    edited March 2015

     Hi Julie,

    Such good advice from others and you have talked to the specialist again to get more facts.

    I had a lumpectomy on the right side in' 98 ( 11 nodes removed, one had cancer ), and a lumpectomy on the left side in 2003. ( sentinel node only removed and was clear ) I had radiation both times, and chemo the first time. So radiation to both sides of the chest and bottom half of the axillas.

    I have mild lymph drainage problems. I do self massage daily. There are different techniques slightly, but from what I know:

    The main drainage lymph duct  drains in the LEFT side of the neck, near the clavicle. It takes lymph from the lower body, (ie both legs), left arm  some abdomen and back left shoulder blade area, I think.

     The RIGHT lymph duct drains into the right side of the neck, and it takes drainage from the right arm and abdomen and back areas.

    SO, the left side takes more? Maybe that is because most people are right handed perhaps?

    You can google heaps on lymph anatomy, which, for me was important to understand HOW it works and drains etc.

    Gentle exercise, water therapy, tai chi.. etc all help to keep the lymph circulating also and not pooling in one spot. After surgery you can imagine it may pool..which in my case it did, although it was a " mild " case, to me it was still a problem to overcome and adjust to. In time the lymph vessels can  grow some new pathways to help drainage etc.

     I also had severe  flushing ( vasodilation of blood vessels ) after the first chemo. Doing too much when that is happening.. is in hindsight.. not a great idea.. LOL Take it easy for now especially.

    When travelling on a plane, or anywhere: I take it s l o w l y ..do self massage and breathing before flying. I have a bag on wheels..so I do not have to carry sustained weight; even 2 kilos can strain etc.. especially early on.

    To most people I look ok.. but I feel in my arm the lymph and swelling comes up if I do too much at once. There is still a lot of ignorance in the lay community and medical community about lymph issues I feel.

      I did feel somewhat " ignored and abandoned " by some of my concerns by " professionals" and consequently.. I feel I did TOO MUCH, when in hindsight I wish I had stopped and assessed things, and had more understanding and advice.. eg work issues.I think I was in DENIAL about some things also at the time. Anyway.. what is done is done.  The body tries to heal itself I think, but that may take some time, after surgery and then radiation on top of it.

    The more you strain and push the lymph system.. the worse it can be, so..learning to do things slowly, gently and carefully was not easy for me initially. Being overweight and your lifestyle may affect things. Also.. after menopause and the ageing process, may effect things slightly too.

    Using gloves when gardening etc.. and keeping skin moisturized etc.. can  help stop skin infections.

     I have had scanning laser also, which I feel has helped my scars to soften, and reduce discomfort and aches and pains, and some  swelling I had. I  do tend to get get thick keloid scars. I " pace " myself now and am good at pottering. I do a bit each day etc.. I have slowed down a lot..but am now soon to be 57. I was 42 and busy time of life then.

    Approximately 70% are superficial lymphatic capillaries located  just under, the skin. The remaining 30%, which are known as deep lymphatic capillaries, surround most of the body’s organs. The deep ones can be stimulated only by Yoga. Like veins, the lymphatic vessels, which are known as lymphangions, have one-way valves to prevent any backward flow.

    The lymphatic system drainage is organized into two separate, and very unequal drainage areas. The right drainage area clears the right arm and chest. The left drainage area clears all of the other areas of the body including both legs, the lower trunk upper left of the chest, and the left arm.


     I have BP taken on left arm, but I prefer manual not with the machine, to reduce amount of time arm is compressed.

    Any SUDDEN, SUSTAINED, PROLONGED, REPETITIVE movements.. can put a strain on the lymph, especially after surgery and radiation and depending on where it is too I guess. Everyone is different.

    So ..take it easy.. " slowly, gently, carefully " is my motto these days.

    Listen to your body, find a GOOD massage person to show you how to do manual lymphatic drainage and slow breathing. The lymph vessels pulsate   SLOWLY and have one way valves, like veins, I think.. They contract.. about 10 times a minute; where the blood vessels contract 70 or more etc.

    Maybe the radiation can be adjusted slightly..so the node  area is done.. but maybe not too far around the side ?..etc

    It is good you are asking questions and getting  answers. I think it helps with the huge emotional journey we  go on after a diagnosis.

     Keep searching,   all the best, Kathy.

  • pisces_taspisces_tas Member Posts: 474
    edited March 2015

     Hi Julie,

    Such good advice from others and you have talked to the specialist again to get more facts.

    I had a lumpectomy on the right side in' 98 ( 11 nodes removed, one had cancer ), and a lumpectomy on the left side in 2003. ( sentinel node only removed and was clear ) I had radiation both times, and chemo the first time. So radiation to both sides of the chest and bottom half of the axillas.

    I have mild lymph drainage problems. I do self massage daily. There are different techniques slightly, but from what I know:

    The main drainage lymph duct  drains in the LEFT side of the neck, near the clavicle. It takes lymph from the lower body, (ie both legs), left arm  some abdomen and back left shoulder blade area, I think.

     The RIGHT lymph duct drains into the right side of the neck, and it takes drainage from the right arm and abdomen and back areas.

    SO, the left side takes more? Maybe that is because most people are right handed perhaps?

    You can google heaps on lymph anatomy, which, for me was important to understand HOW it works and drains etc.

    Gentle exercise, water therapy, tai chi.. etc all help to keep the lymph circulating also and not pooling in one spot. After surgery you can imagine it may pool..which in my case it did, although it was a " mild " case, to me it was still a problem to overcome and adjust to. In time the lymph vessels can  grow some new pathways to help drainage etc.

     I also had severe  flushing ( vasodilation of blood vessels ) after the first chemo. Doing too much when that is happening.. is in hindsight.. not a great idea.. LOL Take it easy for now especially.

    When travelling on a plane, or anywhere: I take it s l o w l y ..do self massage and breathing before flying. I have a bag on wheels..so I do not have to carry sustained weight; even 2 kilos can strain etc.. especially early on.

    To most people I look ok.. but I feel in my arm the lymph and swelling comes up if I do too much at once. There is still a lot of ignorance in the lay community and medical community about lymph issues I feel.

      I did feel somewhat " ignored and abandoned " by some of my concerns by " professionals" and consequently.. I feel I did TOO MUCH, when in hindsight I wish I had stopped and assessed things, and had more understanding and advice.. eg work issues.I think I was in DENIAL about some things also at the time. Anyway.. what is done is done.  The body tries to heal itself I think, but that may take some time, after surgery and then radiation on top of it.

    The more you strain and push the lymph system.. the worse it can be, so..learning to do things slowly, gently and carefully was not easy for me initially. Being overweight and your lifestyle may affect things. Also.. after menopause and the ageing process, may effect things slightly too.

    Using gloves when gardening etc.. and keeping skin moisturized etc.. can  help stop skin infections.

     I have had scanning laser also, which I feel has helped my scars to soften, and reduce discomfort and aches and pains, and some  swelling I had. I  do tend to get get thick keloid scars. I " pace " myself now and am good at pottering. I do a bit each day etc.. I have slowed down a lot..but am now soon to be 57. I was 42 and busy time of life then.

    Approximately 70% are superficial lymphatic capillaries located  just under, the skin. The remaining 30%, which are known as deep lymphatic capillaries, surround most of the body’s organs. The deep ones can be stimulated only by Yoga. Like veins, the lymphatic vessels, which are known as lymphangions, have one-way valves to prevent any backward flow.

    The lymphatic system drainage is organized into two separate, and very unequal drainage areas. The right drainage area clears the right arm and chest. The left drainage area clears all of the other areas of the body including both legs, the lower trunk upper left of the chest, and the left arm.


     I have BP taken on left arm, but I prefer manual not with the machine, to reduce amount of time arm is compressed.

    Any SUDDEN, SUSTAINED, PROLONGED, REPETITIVE movements.. can put a strain on the lymph, especially after surgery and radiation and depending on where it is too I guess. Everyone is different.

    So ..take it easy.. " slowly, gently, carefully " is my motto these days.

    Listen to your body, find a GOOD massage person to show you how to do manual lymphatic drainage and slow breathing. The lymph vessels pulsate   SLOWLY and have one way valves, like veins, I think.. They contract.. about 10 times a minute; where the blood vessels contract 70 or more etc.

    Maybe the radiation can be adjusted slightly..so the node  area is done.. but maybe not too far around the side ?..etc

    It is good you are asking questions and getting  answers. I think it helps with the huge emotional journey we  go on after a diagnosis.

     Keep searching,   all the best, Kathy.

  • juliegljuliegl Member Posts: 31
    edited March 2015
    Thanks everyone for your info. I feel much more at peace with it all. Thanks for sharing your experiences and showing me such wonderful support. You were all an answer to prayer.
    love
    Julie
  • juliegljuliegl Member Posts: 31
    edited March 2015
    Thanks everyone for your info. I feel much more at peace with it all. Thanks for sharing your experiences and showing me such wonderful support. You were all an answer to prayer.
    love
    Julie
  • adeanadean Member Posts: 1,036
    edited March 2015

    keep us posted on how you go.

    adean

  • Leonie MooreLeonie Moore Member Posts: 1,470
    edited March 2015

    Time does go fast whilst on treatment.  Get out there and grab handfuls of life. Best wishes XLeonie

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