dermatomyositis affecting treatment decisions

we5frogs
we5frogs Member Posts: 3
edited June 2014 in High Risk for Breast Cancer

My sister was diagnosed with dermatomyositis about 2 1/2 years ago, and now the doctor found a lump on her mammogram. She was told that radiation is not a viable option for her because it would worsen the dermatomyositis (which the cancer has already done), and she is not interested in having chemo as she feels the effects outweigh the benefits, especially given the inter-ralationship between the cancer and the dermatomyositis, with each having an adverse effect on the other.

She had a mastectomy, and we are now waiting for the pathology results. 

Has anyone here had these two diagnoses concurrently? I would love to be able to give her some solid hope based on life experiences of others who know first hand what she is facing. 

thanks so much - Charle

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  • leaf
    leaf Member Posts: 8,188
    edited April 2011

    I haven't had those two diagnoses, but I probably do have scleroderma (which has some things in common with dermatomyositis).  I don't have bc, but I do have LCIS. You may also want to post on the Getting through Treatment forum.  There might be more eyeballs that see your post there - since dermatomyositis is not a common disease.

    Here are some abstracts with limited info about radiation + dermatomyositis. 

    http://www.ncbi.nlm.nih.gov/pubmed/12173666

    http://www.ncbi.nlm.nih.gov/pubmed/18506734

    I'm so sorry she is going through this.  Its so hard to find people who are in the same situation when you have unusual diseases. 

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  • saluki
    saluki Member Posts: 2,287
    edited September 2008

    I agree with Leaf---

    Post on the Getting through treatment...... There are many others with autoimmune conditions that may have suggestions and are on corticosteroids......  They may be able to shed some light.

    Also, try to get your sisters hormonal status of the tumor......

    Can Aromatase Inhibitors be considered with Dermatomyositis?

    My aunt has both Dermatomyositis and Lupus and although they have perpetually looked for and suspected a cancer---they never found one.

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  • ninelives
    ninelives Member Posts: 14
    edited September 2008

    Hi, so sorry your sister is going through all of this.  I was dx'd with Polymyositis/Dermatomyositis about 20 years ago in my early 20's.  Four years ago, I was dx'd with tongue cancer and went through chemo and radiation for that.  It was a really tough, but I was able to get through it.  The difficulties mainly stemmed from the fact I was unable to (swallow) take my medication I normally took to keep my polymyositis in remission.  I think if I had done the radiation alone I would have sailed through it - but I went through the chemo too and it took a toll.  But I had not only my oncologists but my rheumatologist monitoring me at all times.  This year I was dx'd with DCIS in my right breast and opted for a bi-lateral mast. so I could avoid radiation.  I hope your sister has clear margins and early stage breast cancer like DCIS so that further treatment isn't necessary.  Good luck to you and let's hope for a good path report!

    Allyson

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  • we5frogs
    we5frogs Member Posts: 3
    edited September 2008

    thank you all for your responses - my sister saw the surgeon today, and he said of the 21 lymph node speciments they took, one was positive - so there is infiltration that we were hoping we would not encounter

    I will take your advice and post in the treatment section - and again - thank you

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