Radiation and arm pain

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Sun Whitey
Sun Whitey Member Posts: 36

I have just had my 11th day of radiation.  Had a modified radical mastectomy (left side), 16 rounds of chemo...and am now in the radiation phase.  I am experiencing horrible pain in my left arm that is constant and never ending.  I believe it is because of the radiation.  Ibuprofren is temporary but does not fix it.  My friend is a massage therapist and "pin pointed" the pain (so we think) to where the lymph nodes were that were removed...but even she is not able to relieve the pain.  I'm frustrated to the point of tears!  I have told my techs this at radiation but have not had much luck with support and/or suggestions.  Has anyone else experienced this?  If so, what did you do?  

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  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    That doesn't sound like

    That doesn't sound like radiation?  Are you sure it is not lymphedema or something else.  I would let my doctor know asap.  Also, if you have other symptoms, call 911: chest pressure, jaw pain, nausea, shortness of breath, etc. 

    I never want to frighten anyone, but I had extreme chest pressure with left sided arm and jaw pain, followed by nausea and vomiting.  I knew (beacuse I am an NP) that I was most likely having a heart attack and told my husband to call 911.  Because I am not overweight and had no history of cardiac problems (or family history), my husband had to google my symptoms...lol.  No healthcare professional thought I could be having a heart attack looking at me.  They didn't even start my IV in the ambulance.  Everyone kept saying esophageal spasm.  When my enzymes came back, they were all rushing around and I was in cath lab in ten seconds where the heart attack was unfortunately confirmed.

    My heart attack was cancer-related according to my cardiologist (undiagnosed metastasis which can cause clotting issues).

    If anyone has my symptoms (which I hope no one does), call 911 and chew a regular aspirin.  I kept throwing up the aspirin, so I held the aspirin under my tongue where some of it can be absorbed because of the many superficial blood vessels under the tongue.

    I am sure you are probably fine , but I just want to make sure that all cancer survivors know that their heart can be at risk from cancer and/or treatments.  More women die of heart disease than of breast cancer each year!

     

     

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
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    If you had lymph nodes

    If you had lymph nodes removed, it could be nerve damage as well. There are certain very specific descriptive words to describe the nerve damage pain. Many times nerves are nicked during the removal and causes certain kinds of pain.

    I have had it since I awoke from my BMX with node removal on 1/11/11 (and am the proud owner of NEW nerve damage pain from a left side thoractomy from July 2013).

    Lymphedema can present as pain as well. IF you have nerve damage pain and LE, the LE pain is most definitely worse.

    Radiation can cause pain as well.

    I am daily medications for nerve damage pain, breakthrough painmeds, and get IV Lidocain infusions for nerve damage pain about every 9 weeks and it is three years later! I also have bilateral LE in the arms, chest and sides of chest.

    Can you describe exactly how your pain feels? If the pain is that bad, you need to see a pain doctor (hopefully you get a good one, not an idiot). Unfortunately, many of our surgeons and doctors are clueless about LE and nerve damage pain following breast cancer surgeries and treatments. 

    Finding the right pain treatments is basically trial and error to find what works, what doesn't. It took a few months for my pain drs. and I to find what works best for me and how much medication I can handle.

    Please describe in detail what your pain feels like.

  • New Flower
    New Flower Member Posts: 4,294
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    If you had lymph nodes

    If you had lymph nodes removed, it could be nerve damage as well. There are certain very specific descriptive words to describe the nerve damage pain. Many times nerves are nicked during the removal and causes certain kinds of pain.

    I have had it since I awoke from my BMX with node removal on 1/11/11 (and am the proud owner of NEW nerve damage pain from a left side thoractomy from July 2013).

    Lymphedema can present as pain as well. IF you have nerve damage pain and LE, the LE pain is most definitely worse.

    Radiation can cause pain as well.

    I am daily medications for nerve damage pain, breakthrough painmeds, and get IV Lidocain infusions for nerve damage pain about every 9 weeks and it is three years later! I also have bilateral LE in the arms, chest and sides of chest.

    Can you describe exactly how your pain feels? If the pain is that bad, you need to see a pain doctor (hopefully you get a good one, not an idiot). Unfortunately, many of our surgeons and doctors are clueless about LE and nerve damage pain following breast cancer surgeries and treatments. 

    Finding the right pain treatments is basically trial and error to find what works, what doesn't. It took a few months for my pain drs. and I to find what works best for me and how much medication I can handle.

    Please describe in detail what your pain feels like.

    lymphedema

    hi 

    I am sorry for your pain. most likely you are having lymphedema, that has been accelerated by radiation. you need to see physical therapist to confirm or rule out lymphedema diagnosis. if you are having lymphedema you need to see a certified lymphedema therapist, to do manual drainage, massage ( a special suface touch) and wrapping. compression sleve could help too.

    please keep us posted

    hugs to you

  • Sun Whitey
    Sun Whitey Member Posts: 36
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    If you had lymph nodes

    If you had lymph nodes removed, it could be nerve damage as well. There are certain very specific descriptive words to describe the nerve damage pain. Many times nerves are nicked during the removal and causes certain kinds of pain.

    I have had it since I awoke from my BMX with node removal on 1/11/11 (and am the proud owner of NEW nerve damage pain from a left side thoractomy from July 2013).

    Lymphedema can present as pain as well. IF you have nerve damage pain and LE, the LE pain is most definitely worse.

    Radiation can cause pain as well.

    I am daily medications for nerve damage pain, breakthrough painmeds, and get IV Lidocain infusions for nerve damage pain about every 9 weeks and it is three years later! I also have bilateral LE in the arms, chest and sides of chest.

    Can you describe exactly how your pain feels? If the pain is that bad, you need to see a pain doctor (hopefully you get a good one, not an idiot). Unfortunately, many of our surgeons and doctors are clueless about LE and nerve damage pain following breast cancer surgeries and treatments. 

    Finding the right pain treatments is basically trial and error to find what works, what doesn't. It took a few months for my pain drs. and I to find what works best for me and how much medication I can handle.

    Please describe in detail what your pain feels like.

    details about my arm pain

    Hi cinnamonsmile,

    The pain pulsates and is constant...ALL the time.  It is between the top of my arm down to just above my elbow, almost like a bad muscle ache but it's not a muscle ache???  I'm not sore when I rotate my shoulder or anything like that, it's just this constant pain.  There is a little "socket" area, or "pocket" that lies kind of where my arm is connected to the rest of me (for lack of a better description).  This area hurts a lot, and it was explained to me that this is exactly where the lymph nodes were removed.

     

    This pain did not start until I started radiation.  I had my surgery last April...

    at a loss.

    Any ideas?

  • RE
    RE Member Posts: 4,591 Member
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    Lymphedema

    Lymphedema can happen anytime, sometimes years after treatment.  What you describe sound much like lymphedema which I have dealt with since 1998.  There are things that can be done to help you but lymphedema is usually a life time deal...the sooner you get care the better.  In regards to massage, deep massage is a bad idea as it can cause more pain.  I have a you tube video on the correct technique of massage for lymphedema.  If it is infact lymphedema you could wear a pressure sleeve which helps with the pain a bit and aids in protecting the arm from scatches and such thing.  Please do not wait on this, go see your doctor and tell them you suspect lymphedema. I'll attach the link to the you tube page regarding massage, you may have to copy and past it.  Wishing you all the best. 

     

    https://www.youtube.com/watch?v=q7PPhHqOsUg

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    I had lumpectomy and rads but

    I had lumpectomy and rads but NO pain at all...each of us react differently I KNOW..but I would check with DR-to see if maybe something else going on ..not just from radiation.

     

    Denise

  • Sun Whitey
    Sun Whitey Member Posts: 36
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    RE said:

    Lymphedema

    Lymphedema can happen anytime, sometimes years after treatment.  What you describe sound much like lymphedema which I have dealt with since 1998.  There are things that can be done to help you but lymphedema is usually a life time deal...the sooner you get care the better.  In regards to massage, deep massage is a bad idea as it can cause more pain.  I have a you tube video on the correct technique of massage for lymphedema.  If it is infact lymphedema you could wear a pressure sleeve which helps with the pain a bit and aids in protecting the arm from scatches and such thing.  Please do not wait on this, go see your doctor and tell them you suspect lymphedema. I'll attach the link to the you tube page regarding massage, you may have to copy and past it.  Wishing you all the best. 

     

    https://www.youtube.com/watch?v=q7PPhHqOsUg

    Thank you for the link, RE,

    Thank you for the link, RE, it most certainly will help!  Perhaps I am in the beginning stages of lymphedema...I meet my new doctor today.  She is from The City of Hope so I am positive she will know how to help.

    Have a wonderful day, and thank you so much for your feedback.  I really appreciate it!

     

    Susan

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    Thank you for the link, RE,

    Thank you for the link, RE, it most certainly will help!  Perhaps I am in the beginning stages of lymphedema...I meet my new doctor today.  She is from The City of Hope so I am positive she will know how to help.

    Have a wonderful day, and thank you so much for your feedback.  I really appreciate it!

     

    Susan

    Susan, we are all pulling for

    Susan, we are all pulling for you and the Pink Bus (magical invisible MB support) will be at your doctor's office, right on schedule.  I'll be there with cafe au lait and beignets.  Please let us know!