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Adenoid Cystic Carcinoma Breast - Spine Metastasis

Morgaine - September 2, 2009

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About a year ago my mother was diagnosed with adenoid cystic carcinoma of the breast. It was hard to hear the diagnosis, but the prognosis was good. It was encapsulated, hadn't spread, and she needed no radiation after her breast was removed. We were both very strong about it, and actually laughed a lot about it too (our own little way of coping).

A year later things seemed like they were still going well, until she pulled a muscle in her back that irritated a nerve. A week or two went by and nothing was helping her pain. Her knees felt week, and it made her legs go numb. Her doctor scheduled an MRI to check things out, but two days before her appointment I heard her yelling for me from the stairs. She couldn't walk. Her legs just gave out on her.

I have always seen my mother as strong, and I couldn't believe how week she so suddenly seemed. I brought her to the ER as she requested (trying to be strong, she didn't think she needed an ambulence). They sent her for an MRI, and sure enough decided she needed to go to a different hospital for more MRIs and a consultation from a neurosurgeon. Then we got the news- something was growing in the upper thorasic region of her spine. We didn't know what it was, but it had to be operated on.

The surgery went well and the tumor was sent to pathology. The night of her surgery, they were already saying what it looked like- adenoid cystic carcinoma again. Her own oncologist said "that's impossible." Well, nothing is impossible with this cancer. Sure enough pathology proved it. Worse yet, there are tiny tumors on her lungs as well.

We thought we had beat it; we thought she would be one of those lucky ones who would never have to hear "you have cancer" ever again. We were wrong!

Now I don't know how much time I have left with my mother. I don't know if she'll be there when I finally find "the one" and walk down the aisle, and I don't know if she'll be there when her first grandchild is born. She is too young for this, only 54, and really, anyone who has this is too young, or too good. No one deserves this.

Of the 5,000 people diagnosed with AdCC, I think she may be the only one who has it in her spine. I have yet to come across any other cases.
Note by Sharon: I have been an advocate for this cancer since 1998.  I have met other AdCC Breast patients with spinal metastasis.

So how do you face not only a rare cancer, but a rare cancer that spread somewhere it has never spread before? Here's how we're going to face it: when she is better, and radiation is done, we're going to Disneyworld! And then maybe Paris too! Sounds crazy, I'm sure, but what else do you when you know you're time here on earth has been limited? I want her to see the Louvre, and watch her draw drop when she sees how tiny the Mona Lisa really is. I want to enjoy a glass of wine with her on the Eiffel Tower.

Not only is she my mother, she is my best friend and my entire world. I want to share every happy moment I can with her every day we have left together. I don't know if we have two years or twenty, but I will live every day as if it's our last, so that I can only enjoy my time with her that much more. My heart goes out to anyone and everyone who has ever faced this before. Together, we can all get through this. Thank you for reading my story and allowing me to share this with all of you.