Pathology Report and Decisions

Almost 2 weeks after my bilateral  lumpectomy the surgeon FINALLY called me.

The left side that had hinkey looking cysts/tissue was not cancerous but definitely needed to come out. She said it was more lobular than ductal.

The right side, the breast that betrayed me from the beginning had 2 tumors. One just under the nipple that was now dead. The other that was found on the MRI, that they couldn’t biopsy was 2 cm and ACTIVE cancer. Unfortunately, she didn’t get clear enough margins and it looks like I’m headed back to surgery.

I asked about a mastectomy even if just the right side since we are going back but she still isn’t a fan. She would prefer I be a few more years out.

Also, nothing is going to happen until I have my PET/CT on the 30th.  I have what could be (at least it feels like and acts like) a new met on my 5th or 6th rib. Whatever this is, it’s a hard mass that is painful. It feels like it wants to bust out of my skin and makes it difficult to use my right arm.

So, plan right now is PET/CT and decide if I’m still a surgical candidate and whether or not I also have radiation on the right breast. I will also need to decide what new Aromatase Inhibitor I go on now. If I do have a new spot (or spots) it may be a game changer. I want to keep chemo as far away from me as possible for as long as possible.

The moral of this blog is this:  If you feel that something is best for YOU, and everyone disagrees with you, DON’T GIVE UP.  It’s your body. You know it better than anyone else. BE YOUR OWN ADVOCATE.  Keep pushing and asking questions.

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The surgeon validated me by saying I was absolutely correct in having this surgery because the exemestane didn’t kill it and the PET wasn’t picking it up. Everyone was telling me I was NED when really, I wasn’t.

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Meta-WHAT??

I have Breast Cancer. These 4 words become my mantra. I say them all the time. I try them on like they are a new coat I must now wear. I have Breast Cancer and its in my bones. Well, they THINK it’s the same cancer but they won’t be sure until I have biopsies to confirm it all. There is a small chance that I have two different cancers but I know in my gut it’s all the same beast.

September 4th 2013 is my son’s first day of High School – his Freshman year. It’s also the same day I must have my breast biopsy. Little did I know this would be a 5 hour grueling process.

First, I would need a new mammogram and not just a regular painful one. THIS one requires what seems like too many images but I keep my mouth shut and go with it. Then I’m moved to the ultrasound room. This tech is very meticulous. It’s like she’s hunting for gold or something. She snaps a lot of images. Just when I think she’s run out of jelly to use on me she tells me she’s done and I head to an exam room. And I wait…….and wait……and wait.

After 2 hrs a nurse comes in and has me sign the consent paperwork. She tells me that not only will they biopsy the right breast where the PET scan showed the cancer but they want to biopsy the left too. There is tissue that they cannot properly identify and want to know for sure it’s not cancer. Fan-freakin-tastic.  This day just keeps getting better.

After another hour, needles and what sounds like a staple gun and a lot of tears (mine), I’m told to stay still until the bleeding slows. You see, I’m on blood thinners because before my PET scan I had knee surgery that resulted in a blood clot in my calf. (Another great side effect of cancer). I’m given ice packs and wrapped up with an ace bandage and off I go to pick up my son.

The next afternoon I get a call from the radiologist. She confirms that I have Invasive Ductal Carcinoma. I start writing everything she says furiously. I need to be tuned in now. She says I’m Estrogen and Progesterone positive and HER2 negative. She tells me that based on my other tests that she is confident that the cancer in my spine and rib is metastasized breast cancer but that my Oncologist may want me to have the rib biopsied just to be sure.  Meta-WHAT?  I’m not a stupid person, I know I’ve heard that word before and I knew it was bad but I didn’t understand the magnitude.

That night I did something I shouldn’t have done and would continue to do.  I Googled.  I was told not to but as one does when one needs to get more information we Google.  Bad, bad idea.  I had a very bad evening and the next few days after were just as bad.  There is a lot of old information out there and also not enough information out there.  The first search I did was “Breast Cancer metastasized to bone”.  Do you know what Google pops up as an option??  PROGNOSIS.  (I will not click it, I will NOT click it….DAMN IT!)  The first two options to click are from the Komen website. One would think that with a reputation that Susan G. Koman has that the information would be up to date and informative.  Think again.  Komen told me that the average  length of survival for women with metastatic breast cancer is in the range of 2-3 years.  TWO – THREE YEARS????  DAFAQU???  I did not accept that then and I don’t accept it now.

I would show that Komen bitch a thing or two. She would not dictate to me how long I would live. I have things to do. I have a son to finish raising.  I have a husband I just married.  I have stepson’s I was getting to know.  No how, no way.  I had to find a doctor that would treat me for the long-term and keep me alive.  I could not have a doctor that had this same thought process.

The hunt began the next day.