Scared. Breast edema after mastectomy with reconstruction
Back on the forum after 1.5 years…
I was diagnosed with TNBC 2 years ago: 3cm, no lymph node invasion. I had 16 Chemo+6 Keytruda, double mastectomy with reconstruction, and PCR. All 23 nodes were removed, without infiltration signs. I had no Rads or other treatment since.
In January 2024 I had another surgery on the same breast, to reposition the implant because the skin was too thin.
Starting May-June I began feeling a diffuse thickening of the skin on the operated breast(not specifically on the scar) with 2 spots of about 2-3 cm where the skin feels a bit hard. I had an Echo that confirmed 7mm edema and a thickening of the skin of 4mm, without any discernable mass.
I had 2 doctors telling me it was just a benign change after surgery and a third one(the one that performed the ECO) who sent me for an MRI on Friday.
I am so scared.
Has anybody had this experience? I feel so alone and remember how much this forum helped me during my treatment.
XO
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Somewhat different circumstances, but, yes, I’ve had skin thickening on my treated breast which I believe was associated with my later diagnosed lymphedema. I did have radiation, but they said my issue was also related to the one removed lymph node. Mine occurred about 20 months post surgery. I had a negative mammogram. And since I’ve learned lymphatic massage, purchased compression garments, and have a compression pump, I’m much better. I definitely notice the skin thickening more when my lymphedema is flaring up. My arm was also affected somewhat, but my primary symptoms are in my breast. I don’t like it one bit, but it’s is manageable and not cancer. Hope you figure yours out. But my hunch is yours could also be related to the lymph nodes you had removed.
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Oh, thank you Sarahmaude for your reply!
It would be such a relief to find out it`s lymphedema.
My breast is somewhat bigger, I get marks if I wear a bra(only on the affected breast) and the color slightly turns to pinkish. It`s better in the morning. I can also feel two diffuse rubbery lumps(like a pronounced thickening), one in the interior section and one up above the implant. It started 15 months after the lymph node removal, 4 months after the second surgery.
The Echo states edema of 7-9mm was detected on all sections of the breast. They sent me for a MRI and possibly a biopsy.
Could you feel any lump? Does it turn pinkish if you wear a bra or massage it?
XO
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It did change color at times. I think the “lump” I noticed was my infra mammary ridge. My breast felt really weird! And if I squeezed the skin, it definitely had that orange peel look. I did have a punch biopsy and it showed thickened skin with basically spider veins.
Go through the diagnostic process, but know that post surgery breasts, original equipment or reconstructed can do weird things that aren’t cancer.
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Thank you so much, Sarahmaude!
I'll be waiting for the MRI results, which should return by Friday. One more week to wait… I hope no biopsy will be required. It's difficult when any change becomes frightening.
The IRM was horrible, worse than any I had before, it went on for 50min but the assistant was kind enough to tell me there was no mass, just fluid.
Did you manage to get rid of it completely?
XO
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@nume Lymphedema is chronic. It’s annoying, inconvenient, sometimes uncomfortable, but overall, for me, manageable.
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Sarahmaude, thank you so much!
I received the MRI report. I am ok; inflammation, post-surgical scarring and edema. BIRADS 2. It doesn`t say lymphedema but I guess that`s what it is. It`s great news!🤗
It`s been a tough month!
Thank you one more time!
XO
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