I’ve been having a relationship with NED for the past 16 months. Things were good. Real good. Good enough that one of my Dr’s suggested I take a break from the Aromatase Inhibitor to see if the side effects subside AND instead of monthly Xgeva injections they would be every 6 months. Things were very good.

Next step was the annual breast MRI.

That’s when the game started to change.

This past Sunday, I received notification that there was a message for me in my online medical chart. My MRI was also back. The note was from my Oncologist. There was a problem with my left breast. There was significant thickening of the skin and tissue on the outside – closer to my arm. My Dr asked me if I  had noticed any changes to my skin.

I immediately into the bathroom and started looking. I have dense tissue so it’s not unusual for one breast to be bigger than the other.  But as I’m standing in front of the mirror I realize it’s A LOT bigger. I lifted up my arm and turned to the side to inspect the skin. FUCK. There is definitely something going on. The skin has discoloration and it feels bumpy. I immediately replied to my Dr’s email and told her what I found.

After some emails back and forth and a few phone calls I had a late afternoon appointment to see my Dr.

We talked. She showed me the MRI and the one from last year and how the left breast had significant changes and many “cysts”.  She examined me.  It wasn’t my imagination. The skin was different.  She ordered a mammogram/ultrasound/biopsy for the left breast. This was bad.

When you’re diagnosed with Metastatic Breast Cancer and you still have your breasts intact most do not favor a bilateral mastectomy.  No one knows if removing the primary tumor will extend life expectancy. It’s the metastasis that are the concern. I had actually asked twice, most recently in November for a bilateral mastectomy but I was shut down. The surgeon didn’t want to upset my ‘apple cart’ (my relationship with NED. No one thinks about the possibility of another primary breast cancer. They should.

Next Thursday I go for the biopsy and Friday I go back to the surgeon. The plan, for now, is if all is well I move forward with the bilateral mastectomy and remove any possibility of being in this position again. If the biopsy is positive for Inflamatory Breast Cancer I will jump into chemo for possibly 4-6 months. Then surgery and radiation after that.

For those that don’t know, Inflamatory Breast Cancer is the rarest breast cancer.  It accounts for only 6% of those with a breast cancer diagnosis. It’s also agressive.

The standard treatment plan is 4-6 months of chemo, bilateral mastectomy and radiation.

This type of breast cancer is usually diagnosed late and staged at IIIB or IIIC. This is because there is no ‘lump’ to find. I’m hoping that if this is what I’m dealing with that we caught it early because of the regular scans I get.

How this may impact my overall prognosis is anyone’s guess right now. I just have to hope for the best and pray this week goes by fast. The not knowing is awful.  I’ve been mentally preparing for the worst.

If you’ve had a diagnosis of Metastatic Breast Cancer and you still have your breasts, please, PLEASE get regular MRI’S and make sure you really look at your breasts. Look for any changes. If you notice anything, notify your Dr right away. Don’t wait.

Let my story serve as an example that you CAN get another primary breast cancer even after you’re StageIV.

To be continued………..