Anybody Still Getting Pains 15 months post-lumpectomy??

missrenee
missrenee Member Posts: 2,136 Member
For those who do not know, here's my story:

Lumpectomy-Dec. '09, Re-excision-Dec. '09
TAC Chemo-Jan. '10-May'10
RADS - June '10-Sept. '10

Slight lymphedema-breast/trunk/axilla
Still have swelling--some days more than others. Big lump of scar tissue/seroma.

Still have shooting pains (kind of like a bar-b-que skewer going through) occasionally
with a burning/searing sensation occasionally in that breast. Not enough to take an Ibuprophen, but just enough to remind me "You've had breast cancer!"

I will ask my onc. and surgeon whom I see soon. I love both docs, but sometimes my surgeon looks at me like--"Stop being a baby!" or "No, I've never seen this before". Thought I'd go to my experts. Has anyone else here had this experience?

Thank you, oh knowledgable warriors!

Hugs, Renee
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Comments

  • aisling8
    aisling8 Member Posts: 1,627 Member
    Yes
    Sometimes the breast aches and pulls. Did it just last night in yoga. And the sentinel node biopsy incision site feels like it "sticks."

    But the weirdest thing is the radiated breast heats up when I exercise. The rads onc says no, she's never heard of that. Makes me feel weird -- that it does that and that she's never heard of it. I'm not complaining, I told her. I'm just saying:)

    Whatever. As long as everything stays where it's supposed to, and cancer doesn't return, I don't care. Oh, yeah, I'm a year and a month past surgery.

    xoxo
    Victoria
  • MAJW
    MAJW Member Posts: 2,510 Member
    aisling8 said:

    Yes
    Sometimes the breast aches and pulls. Did it just last night in yoga. And the sentinel node biopsy incision site feels like it "sticks."

    But the weirdest thing is the radiated breast heats up when I exercise. The rads onc says no, she's never heard of that. Makes me feel weird -- that it does that and that she's never heard of it. I'm not complaining, I told her. I'm just saying:)

    Whatever. As long as everything stays where it's supposed to, and cancer doesn't return, I don't care. Oh, yeah, I'm a year and a month past surgery.

    xoxo
    Victoria

    YES, YES AND YES!!!!!!!!
    Oh boy do I have pain! Been waiting, why I don't know, for someone to post this...here's the story..
    Dx April 2009...Invasive ductal carcinoma...triple negative. Stage IIa...no lymph node involvement..lumpectomy May 2009...(two years ago this month, time flies!). Chemo, rads...I'll try to make this as short as I can....

    I started yoga in Jan of this year...middle of Feb started experiencing a "soreness" right between my breasts, on my sternum..gradually got worse...took Advil...became so sore I could hardly stand to touch it....then I started to feel some discomfort in the bc boob....I was eating Advil...then I started getting sharp, sharp shooting pains in the breast and numbness next to the sternum in the breast...fast forward...made an appt with my oncologist...went 3 weeks ago...needless to say, my imagination was running away with me....complete check up....was diagnosed with Costochronditis...(google it)....then, of course, I got the "but"...just to be safe and make sure there were no lesions on the sternum, they sent me for x-rays...all clean! Ok then my mammo and ultrasound...all clean! My radiologist that I have gone to for 20 years for my mammos, who herself had bc 8 years ago explained everything....( she, too, had the same thing happen to her....) during yoga I have pulled muscle and cartilage away from the sternum....ouch! Didn't feel it at the time and also probably pulled scar tissue...Then she explained what part of radiation played in this...Had I never had the radiation, she said, the sternum would have been stronger and most likely this never would have happened...plus I had always been in good shape...in my younger years, I was a gymnast...even taught it....anyway, I'm getting off topic...she and my onc said this can take a very long time to heal....the numbness and sharp shooting pains are nerves trying to regenerate themselves from the lumpectomy...and , oh joy, that could take as long as 5 years!!! She said to continue the Advil and give it time....my mammogram and ultrasound were fine! So now I'm on the yearly schedule...like Traci! I've tried both heat and ice...ice feels pretty god...
    My breast bothers me far more now then it did after the lumpectomy...seems I'm always "aware" of it, once again...even back to using my boobie pillow when wearing my seatbelt......
    So there's my story of post treatment breast pain...It's rather disheartening considering the boob felt fine 4 months ago!

    Hugs to all,
    Nancy
  • aysemari
    aysemari Member Posts: 1,596 Member
    you got some great info here, the ladies always deliver.

    As you know I have no boobs so I can't relate. But I just wanted
    to say I hope it gets better for you.

    Hugs,
    Ayse
  • gagee
    gagee Member Posts: 332
    I also have pain
    It has been 9 months since surgery and 6 months since rads. I still have shooting pain and burning in both breast and nodes. Onc said it could last forever and then again not. Depends on the person. I am praying this will all get better. My prayers are with all. Diana
  • sbmly53
    sbmly53 Member Posts: 1,522
    Me, I do, I do!
    Yikes! It's why I was so scared about what the mammo would show. My surgery was 12/7/09 and rads finished 3/05/10. I hurt most of the time. But not 'real pain' - except those skewer like attacks you described, just an 'I'm here! don't forget me! kind of pain. Almost every night in bed when I roll over to my left (surgery) side - OMG!

    And not only that, but now I've got a more marked shape difference. Doc said it's still the surgery and radiation doing their thing. I'm sure gravity helps the pulling feeling.

    Oh, well.

    Sue
  • Angie2U
    Angie2U Member Posts: 2,991
    gagee said:

    I also have pain
    It has been 9 months since surgery and 6 months since rads. I still have shooting pain and burning in both breast and nodes. Onc said it could last forever and then again not. Depends on the person. I am praying this will all get better. My prayers are with all. Diana

    I also have some pain, like
    I also have some pain, like you said, not enough to take anything for it, but, I notice it. I especially notice it when I reach up high for something. I've never mentioned it as I thought it was just part of the nerve endings still trying to heal from the lumpectomy and rads.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I had mastectomy and get the
    I had mastectomy and get the skewers too, more on the left (cancer side, a little more taken away) than on the right. Sometimes they're sharp enough to take my breath away for a moment. The PT says it's the nerves healing.

    Hugs,

    Linda
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member

    I had mastectomy and get the
    I had mastectomy and get the skewers too, more on the left (cancer side, a little more taken away) than on the right. Sometimes they're sharp enough to take my breath away for a moment. The PT says it's the nerves healing.

    Hugs,

    Linda

    Hi Renee,
    I also had


    Hi Renee,
    I also had lumpectomy w/ re-excision. Had ACT/33 rads. So very similar to you. Yes, I still get shooting pains that I and my surgeon call phantom pain. She explained that it is real pain but phantom meaning they come and go for no reason.

    They don't last long but like you say, just enough to remind you of the cancer. Sometimes my scar under the armpit for the lymph node removal gets tender too. I find that when that happens I use less deodorant in that area for a few days. I only use Tom's on that side too. I use regular deodorant on the "good" side. Now I just use two different kinds. :)

    These things are just part of the new normal. LOL

    Huge Hugs,
    Wanda
  • mjjones453
    mjjones453 Member Posts: 155

    Hi Renee,
    I also had


    Hi Renee,
    I also had lumpectomy w/ re-excision. Had ACT/33 rads. So very similar to you. Yes, I still get shooting pains that I and my surgeon call phantom pain. She explained that it is real pain but phantom meaning they come and go for no reason.

    They don't last long but like you say, just enough to remind you of the cancer. Sometimes my scar under the armpit for the lymph node removal gets tender too. I find that when that happens I use less deodorant in that area for a few days. I only use Tom's on that side too. I use regular deodorant on the "good" side. Now I just use two different kinds. :)

    These things are just part of the new normal. LOL

    Huge Hugs,
    Wanda

    Lumpectomy
    I just realized after seeing this post, that yesterday was a year ago that I finished radation therapy. I do have pain in my breast quite often. I lift weights, and cannot lean heavily on that breast as it is uncomfortable. I did ask the radation oncologist, and he told me it was nothing to worry about, that it is may be that way for a couple of years. Don't you always wonder though if everything is all right? I do. mary
  • cahjah75
    cahjah75 Member Posts: 2,631
    June will be one year since bilateral mastectomy. I still get the occasional stabbing pain near the incision. It does go away in a short time though. My surgeon told me that it can last a year or more.
    {{hugs}} Char
  • new2me
    new2me Member Posts: 177 Member
    cahjah75 said:

    June will be one year since bilateral mastectomy. I still get the occasional stabbing pain near the incision. It does go away in a short time though. My surgeon told me that it can last a year or more.
    {{hugs}} Char

    Yes, me too!!
    I had a lumpectomy a year ago yesterday - finsihed radiation in March. Sharp stabbing pains just like everyone described - a reminder of the cancer. My incision is still tender and my whole underarm is very numb and sore. I expect to live with it the rest of my life. Anything better is gravy :)

    Kelly
  • missrenee
    missrenee Member Posts: 2,136 Member
    new2me said:

    Yes, me too!!
    I had a lumpectomy a year ago yesterday - finsihed radiation in March. Sharp stabbing pains just like everyone described - a reminder of the cancer. My incision is still tender and my whole underarm is very numb and sore. I expect to live with it the rest of my life. Anything better is gravy :)

    Kelly

    Thanks for chiming in, girls
    Sounds like pain is a pretty "normal" thing in varying degrees for most of us. I'm hoping things get better in time, but if this is what it is from now on--like Kelly says--anything better is gravy.

    Happy weekend everyone.

    Hugs, Renee
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    missrenee said:

    Thanks for chiming in, girls
    Sounds like pain is a pretty "normal" thing in varying degrees for most of us. I'm hoping things get better in time, but if this is what it is from now on--like Kelly says--anything better is gravy.

    Happy weekend everyone.

    Hugs, Renee

    bumping up
    bumping up ..
  • steffke0104
    steffke0104 Member Posts: 2
    MAJW said:

    YES, YES AND YES!!!!!!!!
    Oh boy do I have pain! Been waiting, why I don't know, for someone to post this...here's the story..
    Dx April 2009...Invasive ductal carcinoma...triple negative. Stage IIa...no lymph node involvement..lumpectomy May 2009...(two years ago this month, time flies!). Chemo, rads...I'll try to make this as short as I can....

    I started yoga in Jan of this year...middle of Feb started experiencing a "soreness" right between my breasts, on my sternum..gradually got worse...took Advil...became so sore I could hardly stand to touch it....then I started to feel some discomfort in the bc boob....I was eating Advil...then I started getting sharp, sharp shooting pains in the breast and numbness next to the sternum in the breast...fast forward...made an appt with my oncologist...went 3 weeks ago...needless to say, my imagination was running away with me....complete check up....was diagnosed with Costochronditis...(google it)....then, of course, I got the "but"...just to be safe and make sure there were no lesions on the sternum, they sent me for x-rays...all clean! Ok then my mammo and ultrasound...all clean! My radiologist that I have gone to for 20 years for my mammos, who herself had bc 8 years ago explained everything....( she, too, had the same thing happen to her....) during yoga I have pulled muscle and cartilage away from the sternum....ouch! Didn't feel it at the time and also probably pulled scar tissue...Then she explained what part of radiation played in this...Had I never had the radiation, she said, the sternum would have been stronger and most likely this never would have happened...plus I had always been in good shape...in my younger years, I was a gymnast...even taught it....anyway, I'm getting off topic...she and my onc said this can take a very long time to heal....the numbness and sharp shooting pains are nerves trying to regenerate themselves from the lumpectomy...and , oh joy, that could take as long as 5 years!!! She said to continue the Advil and give it time....my mammogram and ultrasound were fine! So now I'm on the yearly schedule...like Traci! I've tried both heat and ice...ice feels pretty god...
    My breast bothers me far more now then it did after the lumpectomy...seems I'm always "aware" of it, once again...even back to using my boobie pillow when wearing my seatbelt......
    So there's my story of post treatment breast pain...It's rather disheartening considering the boob felt fine 4 months ago!

    Hugs to all,
    Nancy

    Exercise and Lumpectomy
    I had my lumpectomy in '05 and I've always felt twinges in the breast. Lately, though, I ramped up my exercise because of some arthritis, and suddently my breast tissue went into overdrive. Sore, lifting my arm causing pain...I too do yoga and I've been holding off concerned that exercise had been contributing to it. I have my annual MRI sked in two weeks, but reading your story has made me feel better. Everything you've said makes sense with my sypmptoms. Thanks for the reassurance.
  • mruczko
    mruczko Member Posts: 110
    Pain
    Renee:
    Do I ever have pain! I had a lumpectomy plus removal of 18 lymph nodes in May 2010 and pain ever since, albeit different from yours. Mine is under the armpit, along the truck and towards the back. Hurts like h..ll, like someone lit a blow torch below my armpit. Also a sensation of muscles pulling. I, too, got a blank look from the good doctors. A thorough study had been done on the subject way back in 2002. My oncologist still can't get over how my armpit looks, he says he has rarely seen a woman who had that deep a depression under the arm. The surgeon is not interested in seeing me, he has no answers. I did all the necessary stretches, exercises, and signed up for massages, which help. Arm movement is good, but the only answer the docs have for my pain are drugs, Gabapentin and/or Lyrica, which take the edge of the pain, but it's still pretty bad. If all fails, nerve blocks. My internist advised me against those because of the location of the pain. Interesting about Yoga, I do a modified form of it, but when I twist to the side I have pain along the upper part of the breast. I gritted my teeth, thinking this is good, but from now on I am going to omit that part! Another option I have been given is having a compounding pharmacy work up pain ointment for me, this is very expensive. We need to get some of the monies collected during this Pink everywhere month of October to help us and fund research into post-operative complications.
    Marlene
  • SIROD
    SIROD Member Posts: 2,194 Member
    Pain is the Body's Alarm System
    Please see someone who will do something about your pain. It isn't normal to feel that kind of pain after that length of time. Ask to see a pain specialist who can help you or direct you to someone who can.

    Whenever, I had unexplained pain in due time, it always revealed itself. It was never a figment of my imagination. No ever! No one makes up pain because they have nothing better to do.

    Best in finding a source and a fix.

    Doris
  • mruczko
    mruczko Member Posts: 110
    SIROD said:

    Pain is the Body's Alarm System
    Please see someone who will do something about your pain. It isn't normal to feel that kind of pain after that length of time. Ask to see a pain specialist who can help you or direct you to someone who can.

    Whenever, I had unexplained pain in due time, it always revealed itself. It was never a figment of my imagination. No ever! No one makes up pain because they have nothing better to do.

    Best in finding a source and a fix.

    Doris

    Pain
    Doris:
    I have gone round and round with the docs. PET scans and blood tests all negative. Wednesday got checked out again thoroughly by the oncologist, prodded and poked. The research I am referring to is called Post Breast Therapy Pain Syndrome and describes me to a T. Prescription - NSAIDS, Neurontin, lidocaine gels, and, if all fails, nerve blocks. I saw a pain guy and never went back! The nerves were severed/traumatized under the arm and I am one of the 25% who have continued pain. The study says - in part "Quality of life issues have prompted us to look at this recently acknowledged condition." With a trend towards more and more sentinel lymph node removals only, this percentage will drop. Asked the surgeon why it was not done in my case - his reply - my cancer was too agressive and my oncologist concers. On top of it all in March 2011 I had to have a large infected cyst removed under the same arm (no cancer), traumatizing the tissue even further! It's me who educated the good docs by waiving this study under their noses and its hard for us to realize that there are limits to what they can do. The pain guy told me he can't help with the burning sensation under the arm, only with the periphial (sp?) pain, since there is a danger of being unable to move the arm at all! So, Doris, here I am!
    Marlene
  • Tux
    Tux Member Posts: 544
    mruczko said:

    Pain
    Doris:
    I have gone round and round with the docs. PET scans and blood tests all negative. Wednesday got checked out again thoroughly by the oncologist, prodded and poked. The research I am referring to is called Post Breast Therapy Pain Syndrome and describes me to a T. Prescription - NSAIDS, Neurontin, lidocaine gels, and, if all fails, nerve blocks. I saw a pain guy and never went back! The nerves were severed/traumatized under the arm and I am one of the 25% who have continued pain. The study says - in part "Quality of life issues have prompted us to look at this recently acknowledged condition." With a trend towards more and more sentinel lymph node removals only, this percentage will drop. Asked the surgeon why it was not done in my case - his reply - my cancer was too agressive and my oncologist concers. On top of it all in March 2011 I had to have a large infected cyst removed under the same arm (no cancer), traumatizing the tissue even further! It's me who educated the good docs by waiving this study under their noses and its hard for us to realize that there are limits to what they can do. The pain guy told me he can't help with the burning sensation under the arm, only with the periphial (sp?) pain, since there is a danger of being unable to move the arm at all! So, Doris, here I am!
    Marlene

    pain
    It has been over 2 years & I still have pain. I am a very
    active person & I had no idea that the pain would continue
    this long. I am usually able to bounce back from any type
    of surgery rather quickly.

    Docs do not seem to think it is anything significant. What really helped
    was at my mammo, the rad techs (who are excellent) said that
    they find this to be a common problem post-bc. So I am not worrying
    quite so much.
  • SIROD
    SIROD Member Posts: 2,194 Member
    mruczko said:

    Pain
    Doris:
    I have gone round and round with the docs. PET scans and blood tests all negative. Wednesday got checked out again thoroughly by the oncologist, prodded and poked. The research I am referring to is called Post Breast Therapy Pain Syndrome and describes me to a T. Prescription - NSAIDS, Neurontin, lidocaine gels, and, if all fails, nerve blocks. I saw a pain guy and never went back! The nerves were severed/traumatized under the arm and I am one of the 25% who have continued pain. The study says - in part "Quality of life issues have prompted us to look at this recently acknowledged condition." With a trend towards more and more sentinel lymph node removals only, this percentage will drop. Asked the surgeon why it was not done in my case - his reply - my cancer was too agressive and my oncologist concers. On top of it all in March 2011 I had to have a large infected cyst removed under the same arm (no cancer), traumatizing the tissue even further! It's me who educated the good docs by waiving this study under their noses and its hard for us to realize that there are limits to what they can do. The pain guy told me he can't help with the burning sensation under the arm, only with the periphial (sp?) pain, since there is a danger of being unable to move the arm at all! So, Doris, here I am!
    Marlene

    To Marlene In Regards to Arm Pain
    Dear Marlene,

    I had two lymph node dissections. The first was with my mastectomy. Four and a half years later, I asked that the large tumor which wrapped around the auxiliary vein to the arm and sucked in two nerves be removed. A second lymph node surgery on level two nodes and my surgeon removed some nodes from level three. The tumor was so stuck to the vein that only some of it was peeled off, the nerves were cut. I did have radiation to kill the remaining cells.

    Osteoarthritis is every where through out the skeleton system. That shoulder has a torn supraspinatus tendon and chronic bursitis. I have a lot of pain in that arm and chest wall area. I have no arm pit, there is my arm and the chest area.

    I do have a lot of other medical issues and often refer to it as my list of eight. Not all are active at once, that only happens occasionally. I have medical specialist who I see on an ongoing basis. One of my condition is fibromyalgia and when that hits, pain pills are worthless. It took a year before I was diagnose with it and the test was so easy, pressure points.

    My recommendation to you is a fentalyn patch. I wear one after refusing over a two year period. Finally, I was in so much pain that I could barely function, so I wear them. I need to function as I continue to work (my choice). I do have pain, but it is tolerable. I found the patch gives continued pain relief where as pills don't.

    Perhaps a patch will help you.

    Best to you Marlene in finding a solution,

    Doris
  • jag755
    jag755 Member Posts: 1
    SIROD said:

    To Marlene In Regards to Arm Pain
    Dear Marlene,

    I had two lymph node dissections. The first was with my mastectomy. Four and a half years later, I asked that the large tumor which wrapped around the auxiliary vein to the arm and sucked in two nerves be removed. A second lymph node surgery on level two nodes and my surgeon removed some nodes from level three. The tumor was so stuck to the vein that only some of it was peeled off, the nerves were cut. I did have radiation to kill the remaining cells.

    Osteoarthritis is every where through out the skeleton system. That shoulder has a torn supraspinatus tendon and chronic bursitis. I have a lot of pain in that arm and chest wall area. I have no arm pit, there is my arm and the chest area.

    I do have a lot of other medical issues and often refer to it as my list of eight. Not all are active at once, that only happens occasionally. I have medical specialist who I see on an ongoing basis. One of my condition is fibromyalgia and when that hits, pain pills are worthless. It took a year before I was diagnose with it and the test was so easy, pressure points.

    My recommendation to you is a fentalyn patch. I wear one after refusing over a two year period. Finally, I was in so much pain that I could barely function, so I wear them. I need to function as I continue to work (my choice). I do have pain, but it is tolerable. I found the patch gives continued pain relief where as pills don't.

    Perhaps a patch will help you.

    Best to you Marlene in finding a solution,

    Doris

    Yes!!

    I had stage 1b no mo estrogen positive diagnosed in Dec. of 2010.  Had a lumpectomy in Dec of 2010, rads Feb-March 2011.  I have weird stinging sensations in the lumpectomy and radiated breast.  Didn't have it the first two years, have also noticed when doing exercises involving my arms, like lifting small weights, it bothers me more.  Also had a problem with upper back area, had it x-rayed to make sure it wasn't cancer, it wasn't, just muscle pulling away.  I'm so relieved to know others have that stinging pain, it was really scaring me, even though my mammo, ultrasound, and MRIs have all be clear for two years now.