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Topic: Phantom 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: May 2, 2018 09:43AM

Merianneb1 wrote:

I am a little over two months post bilateral mastectomy without reconstruction and have started to experience what I assume is phantom pain, especially on the side where the breast cancer was. I am curious if anyone else has experienced it. I had DCIS and Padgets on my left side and before surgery at times the Padgets would get painful and now I am finding I am experiencing that same pain again although when I look down I realize there is nothing there.

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May 2, 2018 10:49AM ksusan wrote:

It's likely the nerves reattaching. Pretty common. Try lightly massaging the area.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 2, 2018 07:49PM Denise-G wrote:

I am 6.5 years out from UMX, and I still have phantom pain and phantom itch quite frequently.

All these years later, it is still weird to me when it happens - especially the itching nipple that has

been gone for so long! The only thing that seems to help the pain and or itch is to gently pat

my non-existing breast area and scar.

GOOD LUCK! my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/23/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)
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Oct 19, 2018 07:16PM Aussie-Cat wrote:

One thing that can help phantom pain is to massage the area while looking in a mirror, which gives the brain clearer signals that there's no longer anything there. I hope that helps.

Diagnosed with nerve pain (post mastectomy pain syndrome) July 2018. Twin sister died of breast cancer May 2019. Surgery 6/19/2018 Prophylactic mastectomy: Left, Right
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Oct 19, 2018 08:54PM MexicoHeather wrote:

I read it, then got itchy ghost nipple. Is that like watching somebody yawn? Yep. It happens to me and I usually go get moisturizer.

Dios es Amor. Dx 10/1/2016, IDC, Right, 3cm, Stage IIB, Grade 3, 3/17 nodes, ER+/PR+, HER2- Surgery 12/5/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 5/10/2017 Whole-breast: Lymph nodes, Chest wall Surgery 10/10/2017 Prophylactic ovary removal Surgery 12/6/2018 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole) Hormonal Therapy Arimidex (anastrozole)
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Oct 29, 2018 03:39PM sherrmue wrote:

8 years out from bilateral masts I still have the occasional phantom pain. They were daily and frequent at first and gradually lessened as the nerves healed and regenerated. I have sensation over my chest now and right axilla which I did not have at first.

Surprisingly, I continue to experience phantom breasts. Maybe more now than in past years when I had less sensation.It sometimes feels like they are still there, including as some have noted, the “itchy nipple”.

Dx 7/24/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 15/30 nodes, ER+/PR+, HER2- Dx 10/2010, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, ER+/PR+, HER2- Dx 10/2014, ILC, 6cm+, Stage IV, metastasized to bone/liver/other, Grade 2, 15/30 nodes, ER+/PR+, HER2-
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Feb 14, 2019 10:45AM mnsotamom74 wrote:

I’m 3 months post double mastectomy and I swear I feel tenderness across my chest close to when I’m getting my period. I always had sore breasts several days before I’d get my period and I’m still having that feeling, it’s definitely weird

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (IHC) Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/3/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Feb 14, 2019 05:41PM Kake wrote:

So weird! I am so frustrated by the breast pain (phantom). There is no stopping it and I don't think "pain" meds would do anything as it isn't truly "painful". It is just always in my face though. Tingling and itching and like little shocks of electricity. If my breast was still there I would swear it was in the nipple area. So many times I've reached down to give it a tweak or itch it.. haha.. but nothing there anymore! I did have pain in the breast before the mastectomy - probably the tumors growing - I had 4 in the left breast. I am a month out from double mastectomy. Massaging the area doesn't really help as it is still mostly numb plus it causes me to feel anxiety when I have too much sensation on the skin. Oh the bloody nerve of my nerves!!!

Dx 9/28/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 1/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Hormonal Therapy 2/6/2019 Surgery Prophylactic ovary removal
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Jun 9, 2020 02:02PM Earth_Sky wrote:

I had my total double mastectomy April 2020 and started getting phantom pain right away. Thought it would go away but still get it mostly at night. What was weird for me a few days ago was I kept seeing my breast in the mirror for a brief moment. It scared me. I then got very sad & put on my fake divas as I call them & did not look in mirror for several days. I am better but it was weird for a few days for me. I just assume I will forever have the phantom pain & usually wrap a soft blanket around my shoulders & focus on to something else. At night I keep a very soft blanket throw near my pillow just in case I get the sharp pains & place it on my chest. What a journey we walk. I will continue to keep a stiff upper lip through it all.

Dx 3/12/2020, DCIS, Right, Stage 0, Grade 3 Surgery 4/9/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right

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