IDC & Scleroderma
Hi, I was wondering whether anyone dealing with both IDC and scleroderma has any words of wisdom for me. I recently had a partial mastectomy and now am trying to assess the risks and benefits of chemo/radiation therapy while also coping with scleroderma sine sclerosis. I'm told that scleroderma is a "relative contraindication" to adjuvant therapies but my doctors don't have a lot of experience in this area, nor is there much research.
Any recommendations, insights, etc., would be greatly appreciated.
Comments
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I don't have scleroderma but have mixed connective tissue disease with skin involvement and did a bit of research when I was diagnosed. The RO I spoke to was hesitant to give me radiation, and studies show a tendency towards late complications when given radiation. (I ended up with a BMX and no node involvement so didn't have to have radiation.) I haven't read about any additional issues with chemo, though. Example study: https://www.ncbi.nlm.nih.gov/pubmed/11769860
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I am bing tested now for scleroderma lung pulmonary hypertension which I had somewhat prior to radiation. Scleroderma for at least three years now, not dx until recently though. I had rads in April / May two places, low low dose. The hypertension of lungs flared and had a terrificly awful flare for two months after rads, from day 4 on. Just now settling down. My new rheumatologist who has my back is testing more now, he told me it was serious that I had an RNP of 7.9 and all the symptoms I have of lupus, scleroderma of esophagus, throat, lungs. Also Sjorgen's mild. But first rheumatologist just said it was nothing and let me go through radiation with no realization what could happen. So be very careful. Be sure your RO and MO understand the dx and symptoms of your past, and be aware how bad it can be. I am now 75% worse than before rads.
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