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Topic: Radiation with Ehlers Danlos Syndrome and Implants

Forum: Radiation Therapy - Before, During, and After —

What to expect from treatment and ways to cope with side effects.

Posted on: Sep 19, 2021 05:02PM

Blessings2011 wrote:

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…

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant Hormonal Therapy 9/5/2012 Arimidex (anastrozole) Hormonal Therapy 10/22/2013 Femara (letrozole) Dx 7/15/2021, IDC: Papillary, Left, <1cm, Stage IA, ER+/PR+, HER2-
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Sep 19, 2021 05:29PM FGodmother wrote:

Blessings 2011,


I have Ehlers -Danlos Syndrome and have had radiation twice for IDC. My situation is a bit different from yours in that I had a lumpectomy and then radiation on my left breast and ancillary region. But I had Canadian protocol which is twice the dose in half the time. I will admit at the end I was pretty fried. But I recovered within a few weeks.


I had recurrence of IDC in my spine this past March. Because we only found on lesion, I decided that radiation on my spine would be a good idea, and the RO agreed. So I had two weeks of radiation on my L1. My back was tender for a few days after, but then the skin was just dry and itchy.


Radiation is a powerful tool in our battle against BC I wouldn’t stress too much about the EDS, but consider your heart and lungs. Even though very targeted, radiation will still impact heart and lungs if given on the left side.


I am wishing you peace in your decision,


Fairy Goodmother


Even Miracles take a little time. Dx 4/22/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/12/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/16/2016 Whole-breast: Breast Hormonal Therapy 8/3/2016 Arimidex (anastrozole) Dx 3/30/2021, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 0/3 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 4/2/2021 Femara (letrozole) Targeted Therapy 4/17/2021 Ibrance (palbociclib) Radiation Therapy 4/19/2021
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Sep 20, 2021 10:55AM Blessings2011 wrote:

Fairy Godmother -

Thank you so much for your kind reply. I was glad to hear that your EDS skin has recovered well from radiation.

I was sorry, however, to hear of the mets to bone.

You're right... radiation can be a powerful tool, and I do wish you well on continued successful treatments.

Blessings

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant Hormonal Therapy 9/5/2012 Arimidex (anastrozole) Hormonal Therapy 10/22/2013 Femara (letrozole) Dx 7/15/2021, IDC: Papillary, Left, <1cm, Stage IA, ER+/PR+, HER2-

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