Backstory: ten years ago I had a bilateral mastectomy with implant reconstruction after being diagnosed with multifocal IDC and DCIS.
I was able to avoid chemo and radiation, and tried aromatase inhibitors for 18 months before discontinuing due to extreme side effects.
I would have celebrated my 10th anniversary of survivorship this month, but a few months ago, I felt two tiny lumps. An in-clinic removal showed positive for papillary carcinoma with a micro invasion.
A larger surgery two weeks ago (wide excisional biopsy) turned up two more lesions, both papillary carcinoma with microinvasion.
Papillary carcinoma is rare, but does show up in post-menopausal women who had DCIS.
At the recommendation of my hospital's Breast Cancer Tumor Board, I consulted with the Radiation Oncologist. Initially, neither the Medical Oncologist nor the RO was advocating for rads.
Now we are discussing possible 3 weeks of left breast and chest wall radiation.
At issue are the following:
1) The concern that radiation of my saline implant would most likely cause capsular contracture. Should this happen, the PS says we start all over.
2) The concern that my fragile, Ehlers-Danlos skin would not tolerate radiation. Some EDS patients have reported severe burns that never healed or faded even after 5 years.
3) Concern regarding cardiac issues: I have atherosclerosis and two heart arrhythmias.
If I decline radiation, I will start Tamoxifen.
Has anyone here had radiation after a mastectomy and saline implant reconstruction?
Does anyone here have Ehlers-Danlos Syndrome, who has gone through radiation?
Just looking for anecdotal stories to add to my research! I want to make an informed decision.
Thanks so much for any insights…
9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
8/21/2012 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
9/5/2012 Arimidex (anastrozole)
10/22/2013 Femara (letrozole)
7/15/2021, IDC: Papillary, Left, <1cm, Stage IA, ER+/PR+, HER2-
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