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Topic: Pain in lumpectomy site years later

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Dec 18, 2012 04:49PM

Rachel1 wrote:

Hi all,

I was dx in May of 2010. I had a lumpectomy was stage 2, grade 3 er/pr+, 7+nodes and brca2+. I did chemo, rads and had a mastectomy a year ago with diep reconstruction. Off and on I get pain in the scar area from the lumpectomy. They took muscle from the area -- lump was on the right at 5 o'clock -- very unusual area. No bc in muscle and clear margins.  My scar in that area is very tight and that changes with how much salt I eat, weight gain, lymphodema, etc.  But does anyone else get stabbing or shooting pain in their original scar area?  Thanks, I'm trying not to freak, but you know how that goes. Reaching for my xanax unfortunately. Rachel

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Jan 4, 2013 12:11PM GmaFoley wrote:

Rachel, yes I do and it has been constant since lumpectomy & radiation in 2011. Pain management doc says it is nerve damage. Have me on nerve pain drugs. Seems to help, it also gets worse with activity.

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Jan 7, 2013 06:51PM Rachel1 wrote:

Thanks, GmaFoley. It helps to know I'm not alone.

Hugs,

Rachel

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Jan 7, 2013 09:52PM ruthbru wrote:

stabbing, shooting pains could be nerve damage or it coulc be the nerves growing back. My doctor says it can take years for nerves to grow back. I started out with sharp 'zings' but very rarely have them now....I am a couple years ahead of you, so things still may settle down.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jan 8, 2013 03:40PM bluepearl wrote:

I had mastectomy and am almost 2 years out and pain is subsiding..but yes...you get those sharp pains. Don't worry..or try not to anyways. I have the ativan always near too. You are over 2 years out too which is a milestone +!!!

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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Jan 8, 2013 03:58PM - edited Jan 8, 2013 04:01PM by JO-5

I'm going to be 9 years out this coming April. I STILL have some pain in the scar area, inside top and where 16 nodes were removed. Had 36 rads with boosts. It has gotten better over the years and seldom have stabbing pains anymore... more like and ache, and soreness. I still cannot take much pressure on that breast and mammograms are awful.... Thank goodness they only last seconds.

My Dr. told me I would always have some discomfort in those areas. I do have breast, arm and truncal LE, but not anything like stage 3 or 4 (more like 1 or 2.)

Drink lots of water, be easy on that arm.. stop when it hurts, and watch the salt. A really good fitting bra helped me as much as anything, plus I wear a snug fitting sports bra when at home. See an LE therapist. You don't have to have a grossly swelled arm to have breast or truncal LE.

It is normal (a new normal) for you to have pain in that area. My Dr. says most likely nerve pain.

JO-5

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Jan 25, 2013 10:46PM bluewillowskys wrote:

yes i have stabbing and burning pain almost 2 yrs later after lump./radiation and tamox. SInce i stopped tamox the pain has gotten worse....posted in the Pain forum just now about it.

Yippy Skippy ! Dx 4/7/2011, DCIS, Right, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Radiation Therapy 6/1/2011 Breast Hormonal Therapy 8/1/2011
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Feb 6, 2013 10:32AM desdemona222b wrote:

I had a lumpectomy in January, 2002 and I still have pain on occasion, sometimes very sharp.  I also have muscle spasms in that area regularly, and I have a keloid scar from the rads on the underside of the breast that just keeps getting bigger and more painful.  Having said all that, I have learned to deal with the pain and I am grateful to be alive and in only moderate pain on occasion.

Dx 11/17/2001, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2-
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Feb 6, 2013 10:51AM AnnieBear wrote:

Yep - almost three years out I still have pain where I had the lumpectomy.  If one of my cats jumps up while I'm lying down and hits my boob, the pain is excruciating.  I'll get sharp pains through there sometimes, sometimes it's a dull ache.  There are so many things that we aren't told when we get cancer - you really have to research everything to know what might happen.  I had a ductal excision last year and no one told me the scar tissue would pull my nipple into my body - if I'd know scar tissue was going to build up I would have tried to prevent that.  It's sad....

Dx 4/2010, DCIS, Stage 0, ER+/PR+, HER2-
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Feb 21, 2013 09:55AM cfdr wrote:

I'm about a year and a half out from lumpectomy and radiation. The "zings" have mostly subsided, but every now and then a few will come back and surprise me. I have truncal lymphedema and costochondritis. The lumpectomy area and the ribs around it are sore to the touch, like they are bruised. It hurts sometimes when I lie flat on my back...so bad at times that I had to go to PT. I keep it at bay now with MLD massage, massaging the scar to break up the adhesions, and doing costochondritis exercises the PT gave me.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Feb 21, 2013 11:51AM GmaFoley wrote:

cfdr - what exercises for costochondritis?? I never received any...

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Feb 22, 2013 07:29PM ktab96 wrote:

I had my lumpectomy and radiation in 2011.  I still have more of an ache in that breast.  The soreness seems to come and go.  Both my Onc and Radiologist tell me this is normal and is still part of the healing process.  Fluid is being reabsorb and my breast is contracting at the surgical site.  My Onc indicated I may always experience tenderness at the surgical site.

During the first six months after surgery and radiation, I experienced chills and a stroking sensation.  I was told that was my nerves healing.  I no longer experience that kind of discomfort.

ONCO Score 18 Dx 5/23/2011, IDC, 1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2- Radiation Therapy 7/17/2011 Multi-catheter: Breast Hormonal Therapy 7/31/2011 Femara (letrozole) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 12, 2014 12:53PM tchinn wrote:

I know this is a year later than the last post, but I am SO relieved (with a quick Google search) to have found a forum like this.  I now feel reassured that the pain that I'm feeling is not abnormal and can be tracked to various changes that I've made recently...like working out more and salt intake. 

I also realize that it wouldn't be a bad idea to get a prescription for anti-anxiety meds. Smile  I guess for someone like me, the anxiety/fear never completely goes away.....

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Mar 12, 2014 09:06PM Lee7 wrote:

I'm glad you posted! It bumped this thread up to where I read it again and it reminded me that , yes, we can still have nerve pain and tenderness years after as things heal and change due to the surgery and radiation. I am still experiencing it but have found too that limiting salt, continuing to do gentle stretching exercises, and resting my arm on that side when it flares up has helped some.  I agree that the anxiety/fear is hard to get over.  I'm still working on that one!

Dx 10/2010, IDC, Stage IIA, ER+/PR+, HER2-
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May 21, 2015 01:08PM DianaJoP wrote:

What a relief to hear so many others experiencing the same issues I am having. I had a lumpectomy in 2003. Still feeling the "zings" and have more than occasional tenderness in the area of the lumpectomy. I mentioned this to my doctor a few months ago and was just told "not to worry about it." I would have liked to have known that this is not uncommon. I was starting to feel like I was "just a baby" or imagining the continued discomfort. Don't get me wrong, I am grateful that this is just discomfort and feel blessed to be alive. Thank you to all of you strong women for your posts. You have given me peace.

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Jun 15, 2015 09:31AM chriztene wrote:

i am five years out and breast above scar is very sore/lumpy...and under my arm where lympnodes were removed...scares me even tho is scar tissue <3

Dx DCIS, 2cm, Stage I, Grade 1, ER+/PR-
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Jun 24, 2015 10:37PM Pbrain wrote:

WoW! I love this thread, and think that BC.org should put some of this information up on their lumpectomy section. I had a lumpectomy in 2012 with rads in 2013, with the boost. My breast ached, off and on for about a year and a half. My BS actually asked me if it ached at my last appointment and I said yes, here and there. She said it would probably ache the rest of my life, don't get worried. But about a month ago, it started to be sore to the touch. It feels like there is a giant lump there and I'm a month or so away from my next mammo. I was freaking! You guys have helped me so much. I guess I thought that if it only ached on its own that would be ok, but to ache to the touch is new and different.

Thanks for the calming info. It does seem to ache to the touch more when I'm not wearing a bra...

Jane~**~***~**~Put your head down and run like Walter Payton! And for those in treatment, this was my fight song www.youtube.com/watch?v=1q3LEa... Dx 9/26/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/16/2012 Lumpectomy: Left Targeted Therapy 11/9/2012 Herceptin (trastuzumab) Chemotherapy 11/9/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 11/30/2012 Taxol (paclitaxel) Radiation Therapy 3/11/2013 Breast Hormonal Therapy 6/14/2013 Arimidex (anastrozole)
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Sep 11, 2015 09:49AM Carriek30 wrote:

oh how I love this site. I've been having pain at my incision site and sore ribs. Glad to hear it is common. Thank you ladies.

Dx 12/18/2014, DCIS, 1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+ Surgery 1/26/2015 Lumpectomy: Right Surgery 2/24/2015 Lumpectomy: Right Radiation Therapy 3/25/2015 Breast
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Sep 18, 2015 02:13PM - edited Sep 18, 2015 02:14PM by GmaFoley

Hey ladies - thought you would like to know - after suffering with rib/breast pain for 4 years, I decided to try something - it was major... I had a breast reduction. The movement in my breast stopped and so did the pain... If you want to know the whole story let me know and I will write it all out. The only pain med I take now is an occasional tylenol...

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Sep 19, 2015 07:18PM - edited Sep 19, 2015 07:19PM by crystalphm

I am relieved to see this topic. I am five years out with pain in the area where the lymph nodes were removed as well as the incision. My doctor feels nerves didn't heal correctly so in my case pressure tells my brain it is pain. I did not have reconstruction, thank goodness.

I have the doctor check these areas every time I go and so far, it is "just pain" and he feels I will have it forever. I am sorry you are all having pain, but also good to know I am not the only one.

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Oct 1, 2015 03:54PM Pbrain wrote:

News flash--I saw my breast surgeon about a month ago and asked if it was normal to have my lumpectomy site be sore to the touch. She pulled up all of my mammograms since the lumpectomy and showed me how the scar tissue was changing (it really was, even I could see that). She said that the tissue was extremely insulted by the surgery and the radiation and that over the years it would slowly heal into a pretty deep scar. She said pain in that area, off and on, changing over time, etc. was absolutely normal and nothing to get too freaked out about. She did say if I was worried to always call her office, but that I should just expect these things as the pissed off tissue heals.

So hopefully that helps others put their minds to rest. It sure helped me.

Jane~**~***~**~Put your head down and run like Walter Payton! And for those in treatment, this was my fight song www.youtube.com/watch?v=1q3LEa... Dx 9/26/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/16/2012 Lumpectomy: Left Targeted Therapy 11/9/2012 Herceptin (trastuzumab) Chemotherapy 11/9/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 11/30/2012 Taxol (paclitaxel) Radiation Therapy 3/11/2013 Breast Hormonal Therapy 6/14/2013 Arimidex (anastrozole)
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Oct 2, 2015 09:30AM Sannoliver1 wrote:

yes gmafoley, please share your whole story of you don't min. Thanks

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Oct 2, 2015 11:05AM GmaFoley wrote:

Sannoliver1, I had a lumpectomy and radiation. I had a bad burn, lost all my skin on my breast. I was around a 44G bra size and the scar tissue was bad. I started having nerve pain on the side under the arm. Any movement keeled me over in pain. I was so sensitive I couldn't wear a bra so opted for a cotton tank under a compression tank. About a year later, I ended up with a lump that they couldn't verify it was just scar tissue. They again did another lumpectomy that showed it was necrosis and no tumor. I ended up with a large seroma that burst the scar open and leaked for 3 months before the surgeon decided to fix it. We both agreed to start over and put a drain in. That worked.. But I was still going through severe nerve pain. Went to a pain management doctor who put me on gabapentin. After 3 years, I started losing my memory and was still in pain. With all my drug allergies the only other things I could take were Tylenol #3/4s and Tramadol. My DH got fed up with this and did some research on Acupuncture and nerve pain. He sent me to an Acupuncturist. Within 3 treatments the nerve pain was gone, BUT any time I walked or exercised the pain would return. We narrowed it down to my large breast size. I then went to a PS and asked, "If I had a breast reduction, would that help the pain" He cautioned me that nerve pain is unpredictable, but my neck and shoulder pain would definitely be better. PS and I decided to go forward.. Took 2 months to get insurance approval and I had the Breast reconstruction/reduction done in Dec. 2014. I had one revision done this past July. Now, I have minor nerve pain from the surgery in a different spot, I am exercising and off all pain meds. It was a major surgery and a very long healing process but it all was well worth it for me.

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Oct 18, 2015 01:38AM 614 wrote:


Thanks to all of you.  This information is very helpful to me.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/21/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)
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Nov 30, 2015 06:27PM Dealite wrote:

Thank you all so much. I try not to live my life in fear of recurrence, but recently the sharp mild pain at the lumpectomy site was working on my fears. ThumbsUp

Dx 10/8/2012, IDC, Left, 1cm, Stage IB, Grade 1, ER+/PR+, HER2- Radiation Therapy 3DCRT: Breast Surgery Lumpectomy: Left
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Dec 1, 2015 12:07AM Moderators wrote:

Dealite-

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Dec 1, 2015 10:25AM GmaFoley wrote:

It is hard not to worry Dealite, but the people here will help you get through those moments!

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Dec 2, 2015 10:35AM Annette47 wrote:

Hi Dealite - looks like we are on a similar time frame (I had my surgery just a couple months after you) and after probably at least a year if not more of no real pain, last week I had some sharp shooting pains at the lumpectomy site too. I’m pretty sure it’s just nerves regenerating, but I wasn’t expecting it to come 3 years later. Just wanted to reassure you that yet another person in your boat is having similar experiences.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Jan 6, 2016 12:07PM msbuck wrote:

Hi I had my lumpectomy 6 mo ago & feeling sharp pains near incision site but also just a slight touch on the incision gives me a weird kind of pain ... It's tolerable but not going away.... Feeling worried & concerne

Dx 6/26/2015, IDC, Left, 2cm, Stage IIA, Grade 2, HER2+ (DUAL)
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Jan 6, 2016 09:39PM GmaFoley wrote:

Don't worry, it is part of the healing process and takes awhile to settle down. The nerves are starting to heal so you might have zingers for up to a year or so.

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Jan 7, 2016 11:41AM Manu14 wrote:

So glad this thread exists. I'm a little over 2 years out from surgery and have had a seroma and scar tissue following a lumpectomy and SAVI radiation. Just this past week or so the aching and occasional shooting pain has been more of a problem. And yes, the mind sure can make you very uneasy about any changing side effects.

I have regular appointments with both my med onc and radiation onc later this month and hoping for reassurance that this may all just be further healing signs.

Dx 9/26/2013, IDC, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 10/22/2013 Lumpectomy: Left Hormonal Therapy 10/28/2013 Hormonal Therapy 1/20/2015 Arimidex (anastrozole) Radiation Therapy Breast

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