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Bordering on the Edge of Despair After Monday’s Appointment With a Different Boob Doc

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I never thought that I’d look forward to getting a second breast biopsy, but if this doctor can get new information that helps her figure out a way to treat and cure this Granulomatous Mastitis, I’m game.

Never mind.

The good Boob Doc is out sick. Another doctor, a man in his late sixties with a very serious and authoritative demeanor is there in her place. He tells me that he has reviewed my chart and medical history, and that I do indeed have a very rare condition. It’s so rare that there is no established protocol, and there is very little research because so few people get this, that there isn’t much point to research. WTF? So, we’re basically just winging it?

He tells me that the cultures from Friday’s abundant pus sample show no signs of bacterial infection. He explains that this means that my disease is auto-immune. It is a result of an inflammatory attack by the very system designed to protect my body. It’s ME vs. me. He tells me that what I had drained on Friday was not really an abscess, but a collection of pus. (There’s a difference? Note to self: look this up.) He also tells me that he will not perform a biopsy, as it could just make the GM flare up even worse, and the initial pathology report was thorough enough.

He does not think that a mastectomy is necessary. He tells me that I just have to accept that this is a chronic condition that I can live with. They can treat the symptoms: pain with pain meds and inflammation with steroids. He says that there’s no way of finding the cause of the inflammation, and that I have to be prepared to accept symptomatic control. This could go away on its own in a year or less, or longer, or it could stay. If it goes away, it could come back, likely worse. I should expect periodic flare-ups. He said I just have to adjust my activity level as my symptoms permit.

BULLSHIT!

Pardon my French, but I am not resigning. No, sir. I want to see my first Boob Doc as soon as she’s well. I want a doctor who will work with me, not a doctor who will tell me how it’s going to be. I don’t have to accept anything. I don’t have to just learn to live with it. I don’t want to stay on painkillers that could (and do) have a long-term toxic effect on my body. I do not want painkillers that render me useless. And I definitely do not want to join the prednisolone frequent flyer club. I’m taking matters into my own hands.

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About A.K.

I am: dreamer, mother, wife, daughter, sister, friend, writer, reader, musician, artist, teacher, translator. I am a citizen of the world. These nations are my home: Denmark, Ecuador, USA, Canada, France and Germany. I believe the purpose of life is to love, laugh and learn. I am over being upset for getting this very rare disease: Idiopathic Granulomatous Mastitis. Forgetting all the pain and havoc is tempting, but I will honor the lessons it brought and release my resentment. This blog is my way of coping and reaching out to others who may be going through similarly unfair and bewildering experiences.

2 responses »

  1. You tell it like it is!!! Don’t let anyone tell you how to feel or what you can or should not do to treat your GM. Like that doctor said, GM is a rare condition. It seems like current women affected by the disease are more experiemental cases than actual patients. Doctors have not clue what to do, so they are winging it. Listen to your intuition.

    Reply
    • You are absolutely right! We are experimental cases. Every doctor I have seen has had a different take on this. Most of the doctors I’ve seen hadn’t heard of GM. I am left to my own devices where I listen to my intuition and use reason and research. I do hope that our blogs help other women going through granulomatous mastitis.

      Reply

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