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Topic: Bi-lat mastectomy & upper back pain?

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Jul 16, 2007 06:26PM

Chelee wrote:

For those women that have had a bi-lat mastectomy are any of you having pretty bad upper back pain?

My first mastectomy was 1-06 and then 4 months ago I had a prophylactic mastectomy and not long after that my upper back & spine started hurting! I was DX stage IIIA, her2/neu 3+++, 5 of 16 positive nodes so you KNOW where I am going with this. Do you think this back pain is normal since my bodies balance has been shifted and changed with both breasts removed...or do you think it might be mets?

Are any of you that have had bi-lat mastectomies having alot of *upper* back pain. Dead center in the upper back. The thought that its spread to my bones worries me. I don't know what to think...but it sure hurts. (Side note, I'm 1 yr & 6 months out from DX.) High recurrance rate.

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Jul 17, 2007 01:15PM Chelee wrote:

I guess I got my answer....now I'm really worried.

Chelee

Dx 12-05, Stage IIIA, Her2/Neu, 3+++, Er & Pr pos, 5 of 16 pos nodes.

Dx 12/20/2005, IDC, 3cm, Stage IV, Grade 3, 5/16 nodes, mets, ER+/PR+, HER2+
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Jul 17, 2007 01:26PM Erica wrote:

Chelee,

Don't jump to any conclusions just because no one answered. Not that many people seem to check the boards during the day. I didn't have that particular kind of pain, but I was thinking that it's notable that it occurred not long after your prophylactic mastectomy, which suggests that it certainly could be related.

So don't panic. But it does sound like something you should check out, for your peace of mind. Hopefully, it's nothing cancer-related, but just your body adjusting to it's newly breastless state.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Jul 17, 2007 03:22PM caaclark wrote:

Chelee,

Did you have rads? That made my ribs and back hurt and it was not immediately after rads. I think about 6 months after ending. I told my onc. and she said to call if it did not stop hurting after 2 weeks. I called her back and she sent me for an x-ray. Nothing showed up and the pain eventually went away. I only had a single mast. but I know my posture is different so I think that has something to do with it too. Call your doc and see what he/she says. We all can relate to your fears!

Carol Clark- Author of WHEN OUR MOM HAD CANCER Diag.1/06 at age 40, 1.6cm, 6+nodes, stage IIIa, er/pr+, her2-, chemo, mast. rads, no recon

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Jul 17, 2007 03:49PM beth1225 wrote:

Chelee,
I had a prophy bilat with recon back on May 7th. The upper back pain between the shoulder blades didn't even go away with percosets. I asked about it and they said it is because of the nerve endings being cut. I also have spots on the shoulder blades on both sides that nobody can touch at all or I jump through the roof! I still get pain there. Carol has a point, call the doc. I have the ps number on speed dial, LOL.

Love and hugs, Beth "Without Humor, life is a walk, not a joyride." PBM 5/7/2007 www.youravon.com/bethcohen www.freewebs.com/larryandbeth is our family website, please visit me!

Dx 1/3/2008, DCIS, Stage 0, 0/6 nodes, ER+
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Jul 17, 2007 05:30PM wallycat wrote:

I am going for Physical Therapy on Monday because I have shoulder pain on my left side. I don't know if it is mis-use of the left side after surgery, an old weight lifting injury, a combination of the above with Tamoxifen, which people say causes joint pain (I've had no other symptoms from it, which worries me), or I too worried about mets. My surgeon (who I trust and adore) and my oncologist both sort of chortled when I even asked. They said we need some time to heal.
I will mention it to my oncologist again when I see him in August...just to be sure. I was a stage 1, no nodes, er/pr+.
I say if you are worried, investigate because none of know until we know. Just from how you wrote it, it seems it did happen right after your proph. mast, which could easily be nerve endings or mis-use.
Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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May 22, 2008 11:00AM Blessed40 wrote:

I am a breast cancer survivor with upper middle back pain between the shoulder blades.  Had partial mast in 2006 and developed breast cancer in the other breast and had the mastect again.  Developed upper middle back pain a little before the first mastect.  I can relate to all of you.  I too, am concerned however I know that my posture was altered considerably after having this.  I used to have quite large breasts and feel that my balance has been thrown off with this thing.  I go to the doctor on the 27th and will definitely express my concerns regarding this.  At this point it's just aggravating.  I'll let everyone know how it turned out. 

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May 22, 2008 01:11PM Blessed40 wrote:

I forgot to add that the only thing that helps me is Advil and a heating pad.  The best!!  Lortab just makes me sleepy.  And that's a whole one.  It helped for a while but now I think my body is immune to it.

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Feb 20, 2012 09:04PM Mesheyl85 wrote:

Hello.. I too am currently experiencing upper back pain. I was diagnosed in April 2009, had my 1st mastectomy in Nov09, my second mastectomy in Nov2010, and I've had radiation and chemo. I'm not sure why my back is sore and I do get mild pain around the scar area. I'm hoping it's because my body is adjusting to not having breasts or my posture. I'm going to take up yoga and see my doc and try physical therapy. It could also be the way I sleep or my bed just sucks. Anyways, I hope it goes away as its intermittent right now. Any advice would be helpful. Thank you... ..-Mesheyl

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Feb 20, 2012 09:05PM Mesheyl85 wrote:

Chelee.. How are you doing now?

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Mar 1, 2013 04:10PM, edited Mar 1, 2013 04:19PM by HappyHanh

Hello Ladies,

I know this post is from 2007 but unfortunately, I know many more women will continue to ask  this question as they too embark on this part of the journey. Thus, I'm posting my experience to see if it will be of help for those seeking information on timing, onset and possible solutions. I had a bi-lat. mx  in May 2011, the severe upper back pain started in Nov 2012 (after chemo, 1 yr of Herceptin treatment and all the reconstructuve surgeries completed). The pain is very similar to those described by others on this post. It originates behind my left shoulder blade (this is where the largest tumor was removed), travels between the blades up towards my neck. It starts out as a sharp pain that is tolerable for me (of note, I have a high pain tolerance) but if left untreated, my entire back starts to hurt and spasm (due to compensation from other parts of my back). Like many of you, I automatically assumed the worse and asked my oncologist to order a chest CT, X-ray and bone scan. All came back negative. I saw a Physical therapist and a chiropractor. Both seemed to help with pain management but the source of the problem is still there as I still have flare ups. With pain medication and muscle relaxers, you can manage the pain as well and hope that it goes away. However, I've had enough flare ups to know that I need to get at the root of the problem. I'm currently seeking help from a doctor of osteopathic medicine (DO) to find a permanent solution. They are trained in osteopathic manipulation techniques that can either resolve the scar tissue that is causing the misalignment of my ribs or they can pop your ribs back in place when it does happen to circumvent the downstream impacts like chronic back pain and muscle spasms (which not all chiropractors are trained to do). I will re-post to give an update once I've explored a couple of options. Good luck ladies and if you've successfully found a solution, I would greatly appreciate hearing from you=) 

Dx 4/28/2011, IDC, 4cm, Stage I, Grade 3, 0/7 nodes, PR-, HER2+
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Apr 6, 2013 09:43PM Alynne61 wrote:

Thanks, Happy, for posting... I never had mid upper back pain... but lots of pain in neck, shoulders, etc.  started after left mastectomy in 1990  and continued after right mastectomy 2 years ago.  at this point, having been checked out and there is no cancer anywhere... I do yoga, stretching, see a chiropractor, and get an occasional massage.  I think nobody ever realizes what surgery does to your body.  after all, the surgeon must manipulate tissues and nerves, remove lymph nodes and interrupt normal lymph pathways, etc.  

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Apr 8, 2013 04:09AM Momine wrote:

Happy, I do not have what you describe, but the back edge of my armpit feels a bit funky, numb, tingly etc. The other day I was lightly massaging the area and there was one spot that was downright painful when pressed, like a muscle pain. So I started pressing and poking it, and when pressed a certain way, it triggered a very sharp pain near my spine, similar to what you describe. I am thinking it must be, as others have said, from nerves getting cut and rearranged.

I find that regular exercise, including some light weight work, is the only thing that keeps my back and shoulders relatively pain free. 

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Nov 19, 2013 01:13PM PeytonsMommy wrote:

Happy, do you have an update for us? I experience similar pain in my back & shoulder. My dr has ordered xrays & bone scans - all negative. I see a PT up to 3x/week & manage the flareups with painkillers/muscle relaxers as well. I would prefer to get to the root of my problem. I had a bi-lateral mastectomy in Oct 2012 with immediate reconstruction, then 6 rounds of C/T, then implants in May 2013. My PT & Chiro have both mentioned several times that my ribs always seem to mis-aligned/popped out.