Radiation after lumpectomy with pain alomost 2 yrs later

SJacques

I HAD SURGERY IN JAN AND FEB OF 08 FOR DCIS.  WENT THROUGH 33 TREATMENT OF RADS.  TILL THIS DAY THE AREA THAT WAS RADIATED IS STILL VERY SENSITIVE.  IT'S BEEN 11/2 YEARS.  HAS ANTONE ELSE EXPERIENCED THIS.  I FIND IT CONCERNING.

vlorsong

You are not alone with this one.  I have to admit I looked at your post last night and didn't post-I wanted to see if you did get any replies.  I'd like to think this is a common thing, but maybe not?  I'm almost 3 years post radiation and I can honestly say that not a day goes by that it doesn't hurt in some part of the treated breast.  I had lumpectomy w/33 rads.  Sometimes it's very sharp and needle like pain but most times it's just achy.  Mostly very achy where along the incision lines.  I gave up trying to speak to a doctor about it because they just brush it off and tell me I only had DCIS (only I did have some microinvasion so that makes it just a tad more than DCIS) and it's to be expected that it will hurt and be uncomfortable for some time. I do have very mild lymphedema in my hand but I sometimes wonder if it is in the breast as well.  I have just gotten so discouraged with trying to discuss this with any of the doctors that were part of the initial treatment that I just suck it up and move on.  I have done a lot of research on my own and I believe that what I am experiencing is normal.  Hopefully you have a doctor that you could talk to if the pain persists.  That's just my .02. 

Binney4

Viorsong, hello!

Do you have a lymphedema therapist yet for your hand? S/he would be the one to see for a diagnosis of breast lymphedema (it's called truncal lymphedema). If you don't have a therapist, or the one you have is not very knowledgeable, here's information on how to find a fully-qualified one near you:

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

Lymphedema is staged, like breast cancer is, so if your mild (Stage I) hand lymphedema is not treated it will progress. That doesn't necessarily mean more swelling, but the development of fibrosis in the tissues inside, which can lead to further lymph blockage or even strength or range-of-motion problems, as well as skin changes and a high risk of infection. Doctors are not much concerned about this sort of thing, unfortunately, so getting a referral can sometimes be a matter of insisting.

Here's a page on truncal (breast or chest, or even back or side) lymphedema:

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

Hope some of this helps. I just don't think we should have to struggle alone with these things.

Be well!
Binney

kpthfaith2

I also have the same symptoms going on 3yrs. I feel on the incision area is where I hurt the most. Lately I have felt like their is pain if I rub on a certain area above the incision. I even feel as though there are tiny round bead like spots but I am cancer free. My Drs. have told me it takes awhile for the area to "regenerate" after having radiation.

rasquel

 i too had a lumpectomy and 33 rads. has anyone else had pain that shoots in the chest area. or the arm.

tweetybird

I though I was the only one out there with this problem!  I had a lumectomy with 5 nodes removed, and 33 rounds of rads, which 5 of them were boosts. Surgery was in Aug of 2006, and radiation from the end of Sept 2006 to the middle of Nov 2006. Mine usually bothers me when there's a change in the weather. I don't see my radiologist any more, but both my radiologist and oncologist said it takes years for the area that was treated to get back to "normal".

desdemona222b

rasquel -

The pain you're describing is nerve pain, no doubt from scar tissue build up either from the surgery or radiation therapy.

Not trying to freak anyone out but I still have pain in my breast and it has been 8 years.  It's not constant, but I do have it.  I also have severe problems with muscle spasms to the chest wall - again, sometimes it is almost constant and other times it doesn't bother me.  I also ended up with a keloid on the underside of my breast from the radiation which keep growing - it is also very uncomfortable.  I basically just live with it and count my lucky stars that I am cancer free and don't have bigger fish to fry.

Liz08

Count me in too and I'm 1 1/2 years out from radiation.   Breast massage and underarm massage has helped those area but it doesn't always.  As far as the rib and chest pain I've tried using heat comprasses but not electric heating pads since there is controvery about them causing cancer b/c of the electronic magnetic fields they produce.  I've noticed that many times weather does play a role in this as well.

Liz08

I forgot to mention in my earlier post, that my oncologist had told me that she has many patients that are 10-15 years post lumpectomy and rads and still have ongoing pain in the scar,breast and arm pit areas.  

Liz08

I just found this new article talking about pain years after surgery and radiation.

http://news.google.com/nwshp?client=firefox-a&rls=org.mozilla:en-US:official&hl=en&tab=wn

You may have to copy and paste the above link into your browser. Go almost to the bottom of the page on the left side there are several links to support this pain that we are still feeling years later.

sara1d

had lumpectomy in March then 35 rad. treatments that ended June 11. Mid September started with breast pain and now have chronic arm/shoulder pain. Been to primary care doc, surgeon, both oncologists, everyone says nothing is wrong.  had a breat ultrasound that was negative. The pain is keeping me up at night, but I feel like I'm crazy - don't really know what to do next

Connie07

I am happy and sad to see the responses in here. I'm in your group with lump, rads 33x and the part that really bugged me the most was the 'boost'.  What? Super radiate the specific site? That made my skin sooo sensitive. The scar kept getting firmer and firmer and last month I had a mammogram that showed a cyst!!!  It was pretty big too. doc blew it off, Oh, it's from the radiation. But it hurt and I complained and she needled it and drew off milky white fatty stuff. But it still HURTS. Specially if I bump into something (brilliant), or try to carry too many things. Even the shower water is uncomfortable.

Not to mention the trauma to my thyroid gland and the worst of all the bones and disks in my spine are deteriorating rapidly and I can't seem to find a doc who will look at the whole me. They all want to concentrate on one site. "What hurts the MOST today?". Well, I'm here for my entire back. Oh, let's look at the lumbar. . . .  NO. Lets' look at the whole thing!!!! PLEASE. I can't keep paying co-pays for you to diagnose three or four times. FIND IT. FIX IT. But they don't and I'm in pain every day and looks like it's gonna be that way for a while.

Apologies for the rant. I just feel that that fateful random mammo that found DCIS, June 2007 has blown up my life. BLEW IT UP!!! I had a job I loved, active, dancing, gardening, reading, shopping, cooking. It was full and fun. Now, I'm disabled, look like I've aged another 20 years which SUX. And my job is gone, the garden is a disaster, the poor house is neglected. The dog died. I dance no more. 

~Connie