Hi yall my name is Kaleigh I have an autoimmune disorder a blood clotting disorder and I’m Barca positive and I’m...
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For informational purposes only
This answer was generated by AI grounded in NCCN guidelines and published medical literature. It is not medical advice. Always consult your oncologist or care team before making treatment decisions.
Sources & medical oversight
- Built by OpenCancer’s team of physician-scientists and cancer survivors.
- Last updated October 3, 2026. Informational only — not a substitute for your oncology team.
Question asked:
Hi yall my name is [removed] I have an autoimmune disorder a blood clotting disorder and I’m Barca positive and I’m really struggling with the decision to have a double mastectomy now or waiting any advice,thoughts or suggestions
Hi Kaleigh! I'm glad you reached out, and I can hear this is a really challenging decision you're facing. Let me help you think through this more clearly.
First, I want to understand your situation better so I can give you the most relevant information:
A few clarifying questions:
- When you say "Barca positive," do you mean BRCA positive (a genetic mutation that increases breast cancer risk)? This is really important context.
- Do you currently have breast cancer, or are you considering preventive (risk-reducing) mastectomy?
- Have you had genetic counseling to discuss your specific BRCA status and risk level?
Why This Matters for Your Decision
Your medical complexity—autoimmune disorder, blood clotting disorder, AND BRCA status—means your surgical timing and approach need careful coordination between your oncologist, surgeon, and other specialists. This isn't a one-size-fits-all decision.
General framework doctors use for BRCA-positive patients:
According to NCCN Guidelines for Hereditary Breast and Ovarian Cancer, BRCA-positive individuals have significantly elevated lifetime breast cancer risk. The guidelines discuss both:
- Surveillance approaches (regular screening with MRI and mammography)
- Risk-reducing mastectomy (preventive surgery)
However, your autoimmune and clotting disorders add complexity that affects:
- Surgical timing and safety
- Wound healing
- Anesthesia considerations
- Post-operative management
Key Questions to Ask Your Healthcare Team:
-
"Given my autoimmune disorder and blood clotting disorder, what are the surgical risks and benefits specific to MY case?"
-
"If I'm BRCA-positive, what is MY individual risk level, and does that change the urgency of surgery vs. surveillance?"
-
"What pre-operative optimization would my rheumatologist and hematologist recommend to make surgery safer?"
-
"What's the timeline? Is there a medical reason to do this now versus in 6-12 months after optimizing my other conditions?"
-
"What does surveillance look like if I choose to wait, and how often would I need imaging?"
-
"How will my autoimmune medications affect healing, and do any need to be adjusted?"
Why Coordination Matters
Your autoimmune disorder and clotting disorder aren't minor details—they directly impact surgical safety and recovery. The American Cancer Society emphasizes that risk-reducing surgery decisions should be individualized based on personal risk, medical history, and patient preference.
This means: You need your full care team talking together—not just your surgeon, but also your rheumatologist and hematologist—to determine the safest timing and approach.
This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.
Would you like to clarify whether you meant BRCA positive? That would help me give you more specific educational information about your options.
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