Pain from lumpectomy and arimidex

MMac · May 2012

I am 11 months out from a lumpectomy, 5 months out from a re-excision. I was diagnosed 11 months ago with Stage IIIc, 10+ lymph nodes, ER,PR,HERneu positive. My oncologist said I had probably had the cancer for nine years even though I had been getting mammograms yearly for 20 years. After the lumpectomy I had TCH for 5 months, then the re-excision, then 35 radiation treatments. I am still getting herceptin and started arimidex in December. My breast still hurts a lot and the arimidex has made my fibromyalgia more severe and more joints are hurting. Any advice for that pain? Also, how long does it take for the breast to stop hurting. How do you get a mammogram with such a sore breast?

thank you - this is my first time ever writing on a disussion board.

Jennt28 · May 2012

Mine hurts too Mary! BS even sent me off for an ultrasound but it showed nothing... The pain is constant and hard to ignore. Will watch here with interest to see what others say or suggest...

Jenn

MMac · May 2012

Thanks Jenn. Hopefully we'll get some more replies.

Lee7 · May 2012

Mary & Jenn,

I still have pain, a year out from my last rad. It started shortly after my lumpectomy and ALND surgery and I think it's from trapped nerves in scar tissue in my armpit. The pain goes from there down my arm but also shoots down into my breast.

I did have Physical Therapy for a couple of months until my insurance ran out. It seemed to help some. I'm hoping to go back again since I feel its tightened up more now and the pain has increased again. I take Arimidex and I think it contributes to the pain.

Aside from seeing a PT, I'm not sure what else to do either. I did have my mammo already and it wasn't taht bad. Just remember to tell them you hurt and they can go easy.

Lee

MMac · May 2012

Thanks Lee. I think some of my pain is from the ALND surgery too. I've had a lot of problems with my arm.

Mary

amritunjaykumar · May 2012

my wife has finished radiation of breast ca on 28th march12 now she is facing breast pain and the operated are become very hard.she became nurvous.ER(-) ,PR(-)cerbB+2(+)

HPR(6.01.12) auxillary nodes0/9 apical 0/1 all CM free LV(-)PN(-)PT =0.2cm scanty viable residual IDC

bluepearl · May 2012

Pain can also come from the rads and harming a very important nerve. However, most of the time it goes away, even two to three years later. I had mastectomy, no rads or chemo and ALND (7) and ended up 15 months later still with pain ...but it HAS decreased. Some ladies have had it go away within that time frame.

Jennt28 · May 2012

I'm now thinking my painful spot in the breast is the clip the surgeon left in to mark the tumour bed. I haven't had rads yet so it can't be brachial nerve damage, which is usually only a risk after supra-clavicular rads.

Jenn

camillegal · May 2012

I had all te chemo-(almost 3 ys+herceptin) rads and 38 lymphnodes out from different places????I guess it was all over the place--anyway I have more pain now than 4 surgeries and all that stuff. My legs, arms, (lymphodema) hips--LOL every place there's a bone or joint there is a pain. It's almost every day, on my better days there's still pain but more hurt than pain. My breasts are gone so that's mostly my none hurting parts--but even that hurts sometime it feels like pulling across and tightening.??? So alot of us are in that same boat we have to keep afloat.

I'm sorry u all have so much trouble, u'r younger and maybe have young kids or are working. I feel worse for u

Lee7 · May 2012

Jenn,

Two things you mentioned got me thinking because I did have rads to both my breast and super clav region,so maybe that nerve is what is bothering me and I know I have a ton of surgical clips in my armpit from surgery. I saw them when I saw the actual chest xray they did. I know they can't be too big but I have almost 40 in there and maybe some of them press on nerves. I will be seeing my Rad onc again and I'm going to ask.

bluepearl, its good to hear that the pain can gradually go away. I've been afraid at this point I was stuck with it. This gives me hope.

Jennt28 · May 2012

40 clips? WOW!

I've got 2 clips from having my gallbladder removed 3yrs ago and I know that I was able to feel them (hurting) when I moved for ages afterwards. Still can sometimes...

When my BS said before my lumpectomy that she was going to put a marker clip in so that the RO could locate the tumor bed I did tell her I wasn't keen on it because of my experience with clips previously. But she talked me into it with the whole "hypoallergenic" thing.

Damn do I regret it now. Specially since I met with the RO the other day and she said that most BS don't make it so easy for them ie: don't leave a clip in.

Jenn

Lee7 · May 2012

Jenn,

Maybe be glad the BS put the clip in. My BS didn't and when I went to rads, my RO insisted they had have clips in my tumor bed so they could see the correct area to do the boosts on. So that was an additional little procedure I had to have that wasn't much fun.

I'm glad the things are at least hypoallegenic. Hopefully they won't set off any metal detectors either. I'd hate to have to explain all this to an airport security person.

Lee7 · May 2012

MaryTex,

Have you checked out the threads on Arimidex? They have a lot of suggestions on things that help with the joint pain. There has been a mention of taking Clairitin daily. Don't know if it would help with breast pain or fibromyalgia.

MMac · May 2012

Thanks Lee. I'll check that out.

Believe777 · June 2012

I had my lumpectomy on May 1st, my surgeon also removed 3 lymph nodes that were clear. The first month was extremely painful, I bought so many bras! I never found one that didn't bother the incision under my arm. 2 months later and I am almost pain free from the surgery, my underarm scar looks good but still hurts, sometimes worse than others.

I have had 9 radiation treatments and have 11 more to go.

The techs at my facility are so kind. I don't have any trouble laying still during my zaps. They last 7 minutes. My arms over my head don't bother me. I usually count the length of the noise on the machine but the last couple of times I just close my eyes and pray that my heart and lungs are spared.

Rosemary1049 · June 2012

Hi,Believe777, your story is similar to mine.July 2008 I had a lumpectomy and a second surgery in August because of the margins showing more cancer and 6 lymph nodes removed showing clear. then 16 radiation treatments. Because the cancer was so small they gave me the choice to have chemo if I wanted to or not, it would onlly give me another 1% survival so I opted not to get it . My skin survived the radiation well as I used the cream they recommended faithfully. I have been using Arimidex since. After about a year, gradually I started noticing pain in my muscles and joints , worsening with excerise , some cramping in my feet and lower legs and sometimes in other muscles off and on. My breast (RIGHT) has been tender since the treatments and tender when the nurse does an examination. I try to do my own exams but I feel that my breast is more lumpy feeling especially under the breast against the chest wall . almost like fibres have develped there. My doctor dosent seem to be able to feel it and it doesnt seem to be showing up on mammograms. My last mammo was the most painful I have had but that could be the tech. I am hoping that the muscle problems will go away when I stop the meds in about a years time. I tried some anti inflammitory meds that my gp recommended and they really hurt my stomach then he gave me another precription for the stomach pain so I dropped both of those and I am tuffing it out. All in all the pain is tolerable, better than the alternative, like my Doctor said "Do you want Cancer". the answer was No. Anyway, keep a good attitude and you will get through it. Good Luck

Rosemary1049 · June 2012

Hi, your story is similar to mine.July 2008 I had a lumpectomy and a second surgery in August because of the margins showing more cancer and 6 lymph nodes removed showing clear. then 16 radiation treatments. Because the cancer was so small they gave me the choice to have chemo if I wanted to or not, it would onlly give me another 1% survival so I opted not to get it . My skin survived the radiation well as I used the cream they recommended faithfully. I have been using Arimidex since. After about a year, gradually I started noticing pain in my muscles and joints , worsening with excerise , some cramping in my feet and lower legs and sometimes in other muscles off and on. My breast (RIGHT) has been tender since the treatments and tender when the nurse does an examination. I try to do my own exams but I feel that my breast is more lumpy feeling especially under the breast against the chest wall . almost like fibres have develped there. My doctor dosent seem to be able to feel it and it doesnt seem to be showing up on mammograms. My last mammo was the most painful I have had but that could be the tech. I am hoping that the muscle problems will go away when I stop the meds in about a years time. I tried some anti inflammitory meds that my gp recommended and they really hurt my stomach then he gave me another precription for the stomach pain so I dropped both of those and I am tuffing it out. All in all the pain is tolerable, better than the alternative, like my Doctor said "Do you want Cancer". the answer was No. Anyway, keep a good attitude and you will get through it. Good Luck

Believe777 · July 2012

Rosemary,

I hope you are improving every day. I haven't had a mammogram since my surgery. I usually take an 800 Motrin before a mammogram, I will continue to do that. Thanks for the heads up!

I get leg cramps too, especially in the am, they wake me up, so much for sleeping in. I guess I can live with that.

I just re read that your surgery was in 2008! Congratulations. I was getting concerned that so many people have talked about reoccurances. Stay healthy!

purple32 · July 2012

No pain at all after May 1st LX ( knock on wood) No rads here so I am wondering if that may be the culprit (?)

Hope you find relief.

bluepearl · July 2012

I read a post from a fellow who had lung cancer removed and he said it took 3 years for the pain and nerve recovery to complete..now pain free. I also read that post mastectomy pain mostly goes away for the majority who get it...years down the pike sometimes....and I noticed it can happen fairly quickly once it happens. Strange. On lady thought she'd have it for the rest of her live...all kinds of pain killers...then, within a month, it disappeared! So, always keep hope alive! I have some still, after a year and a half but boy, every little improvement, I TAKE it!!!! Exercise helps too.

ruthevans41 · July 2012

Have cam across to a few more post on other boards where in persons without Rads have claimed to be pain free. Can we have some more comments from the folks who have gone through without rads..?

Lee7 · July 2012

Ruthevans41,

I did have the rads but I had the pain before I went to rads. I think the rads can make it worse, but I know my nerve and cording pain was already there from the surgery.

KS1 · July 2012

Two other possibilies are axillary web syndrome (aka "cording" - which can affect breast) and breast lymphedema. Do a search of the lymphedema board, or check out the step up/speak out website:

Breast lymphedema:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Axillary Web Syndrome:

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

Lee7 · July 2012

KS1 , that's a great website. It helped me to understand what cording is, and it has tons of info on Lymphedema.

dogsandjogs · July 2012

I had a mastectomy in 1982 so no rads. It has been so long, but I don't remember any pains to speak of; just a weird tingling and feeling of ants crawling under the skin. But I think that was because they cut a lot of nerves and I also had 17 nodes removed.

Then in 2011 I had a new primary - this time I had a lumpectomy. Decided against rads due to the SE's and my age. No pain at all in the breast . So maybe it IS the rads that is causing the pain.

I remember the first surgeon telling me that a mastectomy is not considered to be a painful surgery

Allagashmaggie · July 2012

I had a lumpectomy last October then once the path report came back and based on my onco-type score, I did chemo. Originally after the biopsy they thought I would just need radiation. I I had 36 treatments of radiation, which ended April 26th, 2012. I have absolutely no pain in the diseased breast (left) but after about 3 weeks on arimidex, I started having some pain and burning in my right breast. It seems to have subsided now but with my 6 month followup mammo on July 23rd, I feel anxious. Side effects listed in my info with Arimidex says painful and swollen breasts can be a se. Other than a few aches and pains that come and go in the joints, I am pretty much pain free.

purple32 · August 2012

You can look up kaara in the member search and try a PM. I know she did not have rads.

wendywoo · August 2012

Hi I had lumpectomy in 2009, chemo in 2010 but no rads, I had cord but with lots of stretching and exercise it has passed, i do though get pain in the breast where i had the lump removed, not excruating but enough to stop me doing what I am doing, all scans reveal nothing

Pain from lumpectomy and arimidex

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