Details

Now that we've had some time to process what is going on, I'd like to give an update which is more specific as to what we are dealing with and how we are going to proceed.

I was diagnosed with a very rare breast cancer called Paget's disease.  Basically, when I had my mastectomies down at Mayo they figured I was a good candidate for mastectomies which leave more of the breast tissue intact.  This made reconstructive surgery more appealing to me, and more than likely the emotional healing a little easier as well.  However, I was warned this procedure would increase my chance of a local recurrence, be it ever so slight.  I took the risk, and that is probably why we are where we are today.

After researching Paget's disease, I learned that it makes up less than 5% of all breast cancer cases and has around a 1% chance of occurring after the type of surgery I had.  Most of the time Paget's presents with an underlying breast cancer which could be invasive, but considering most of my breast tissue has been removed and the fact that I had a clear breast MRI the end of February, that shouldn't be the case for me.  My biopsy only showed non-invasive cancer, but the surgeon did say there is a small chance invasive cancer could be found in the additional tissue removed during surgery.

We were very pleased with our surgeon who did the biopsy in Fargo.  He possessed excellent bedside manner, was very knowledgeable and he took the time to request my surgery notes from Mayo.  Treatment in Fargo was appealing until I started researching and discovered exactly how rare Paget's disease is, and how the prognosis is decreased in younger women and women with Her2+ cancer.  I have one shot at this, and I'm making it the best shot I have.  I have decided to go back down to Mayo Clinic for treatment in hopes they will have had more experience with the scenario I'm dealing with and be able to advise the most forward treatment available.

So once again, we will be traveling to Mayo Clinic to see what they advise for a treatment plan.  We leave Monday and I don't know when we will be back.

I have no regrets about the choices I made for treatment and reconstruction five years ago.  That is the path I needed to take to process what had happened to me and now I'm moving on.  Is the experience I'm having now hard?  Yes.  However, emotionally I believe I'm in a better place today than I was five years ago.  Still feeling blessed....