Has anyone had their Breast Cancer me... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Has anyone had their Breast Cancer metastasized to the breast skin (aka Skin Mets)?

gindifox profile image
10 Replies

Diagnosed with invasive lobular breast cancer in my right breast in 2015, estrogen and progesterone positive. I subsequently had a mastectomy followed by radiation with clean margins and with no evidence of disease. A couple years later, I had breast reconstruction and it was discovered that my breast cancer had metastasized to the mastectomy scar and to the skin in my breast only. I have clean pet scans, clean ultrasounds, and clean mammograms. All imaging still show no evidence of disease, yet biopsies of my breast skin show micro metastasis in my breast skin only. My medical team wants to treat me with systemic therapy only (exemestane/ibrance). Has anyone have a similar diagnosis to mine? Has anyone had a doctor that has treated skin metastasis? I need a second opinion to evaluate possible local treatments in addition to systemic therapy.

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Lolabazzle profile image
Lolabazzle

Will you also have an excision of the skin Mets? I have had recurrence in chest wall and on the skin after my mastectomy and had the tumors surgically removed first then changed oral therapies. Best wishes to you... (I went on femara first and now IBRANCE)

gindifox profile image
gindifox in reply to Lolabazzle

My oncologist/surgeon are reticent excise myskin mets as they are not certain as to the location of my tumors in my skin as my micro metastasis/tumors to the skin do not show up on any scans; they only appear on punch biopsies. Essentially, they tell me that do not know where to start and where to finish if they were to attempt to remove my skin in order to excise the skin mets. In your case, how was your surgeon able to determine where to remove your mets? Were your mets visable on any scans. Thank you for responding, I need all the advice I can get.

Lolabazzle profile image
Lolabazzle in reply to gindifox

Mine lit up on the PET/CT. I pray they come up with a plan for you...

gindifox profile image
gindifox in reply to Lolabazzle

Thank you!!!!!!!!!

Bubbles001 profile image
Bubbles001

I had them on my chest a year ago. Got them biopsied and they were triple negative and my tumors were always ER+. I would get a biopsy as it’s easy for skin mets. I was treated with immunotherapy (Tecentriq) and they are completely gone and have been for a year! Onc says he sees more skin mets now since MBC patients are living longer.

gindifox profile image
gindifox in reply to Bubbles001

Hi Bubbes001: How were you skin mets discovered? Did the met show up on a scan?

thanks!!

Bubbles001 profile image
Bubbles001 in reply to gindifox

They were visible to the PA and we didn’t need to scan for them. She had them biopsied and they came back as cancer. They were bubbly and oozing, so I knew something was off. Subsequent scans have not noted any skin mets and I can’t see any on my body. I mentioned they were triple neg. I think the Onc treats me as such even though we can’t see them.

gindifox profile image
gindifox in reply to Bubbles001

thank you kindly and my best to you!!!!

hdhonda profile image
hdhonda

I had bc in 2000 - stage 1. In 2017 I had clean mammogram report (but it wasn't). They just weren't reading the mammograms on reconstructed breast. It was in the little bit of skin left and very visible and had been there for at least several years. It was found by someone else on a cat scan for something else. A lymph node had gone to my other breast and in my right lung. Just like that I was stage 4. Moffitt checked several previous mammograms and it was there and very visible. I don't know when it showed up as Moffitt requested the last three and since then records have mysteriously disappeared. I am on Ibrance/Letrozole. Best wishes. Blessings Hannah

gindifox profile image
gindifox

Hannah: Thank you and blessing to you too!!!!

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