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triple negative breast cancer in lymph nodes (cancer of unknown primary)

Brief recap: Monday - my Oncologist called and we had an uncomfortable exchange. She told me she was going to call me with my Her2 results. Tuesday - my results were added to my Pathology report that I am unable to get and all my doctors and nurses were gone for the day. It's Wednesday, and I hoped that someone would be calling me soon.

Results Day, Wednesday

My daughter actually had a meeting with a coach before we were scheduled to go on a campus tour the school. We arrived early and decided to get out and enjoy the view before her meeting. Not a minute before the coach began walking toward us, my phone rang. It was the Oncologist nurse who was telling me that my Her2 was negative. I have Triple Negative Breast Cancer.

Yikes, I already knew that was the option... but I was hoping it was not the option I would get.

I can't fully remember the things we said because I was walking toward my daughter and the coach. And she knew. She knew by the look on my face. She could read my expression, even though I attempted to hide it. And I knew she knew, and I knew I had to hang up the phone. 

Ironically, this reminded me of when I was diagnosed with my first primary cancer in 2013. I was walking to my daughter coming out of school when she was in Kindergarten. Now, I was walking to her as she was outside of one of her dream colleges.

It paralleled to 2013, and I was ready to finish the phone call. Unfortunately, this time the nurse wasn't telling me anything new, and my mind was racing with thoughts - including even if I was still considering using this Oncology group. I also knew my results were bad... and time was not on my side. 

... the American Cancer Society estimates that about 32,590 cases of cancer of unknown primary will be diagnosed in 2023 in the United States. This number represents about 2% of all cancers.

I looked at my daughter's face and told the nurse I couldn't talk at that time because I was in a meeting with my daughter. I asked if I could call her back. 

She said no (I was surprised because shouldn't I be able to call to talk to her or have her call me back). 

She asked when I was free, so she could call me. I said two hours. I have no idea why!?! I completely forgot that I would likely be in the middle of Princeton's college tour, but I wasn't thinking. We hung up. And I went on a lovely tour with the nicest coach, and where my daughter knew which type of cancer I had by the looks we gave each other.

As soon as the meeting with the coach was over, we had to go on the scheduled college tour. We had a chance to talk as we tried to find out tour. Of course, we were running late (and slightly worried about me too). 

More than two hours passed without any call from my Oncologist or her nurse. I kept thinking that I should have heard directly from my Onc, only because she told me she would call me directly. However, I was still going to give her time. Maybe she would call later that night, around 6:30 pm (since that is the time she had called me for all of our conversations). 

I did get a phone call from the nurse a bit later, at the end of the walking tour. I stepped aside, so I could talk - hoping to get more details. But mainly, the nurse wanted to tell me to make an appointment with the Radiation Oncologist. I asked her what the treatment plan would be. She said it was likely chemo, surgery, and radiation - that would need to start asap. I was hoping for more information about the details, but it was vague. I waited to see if she noticed my appointment with the Onc was twelve days away. She did, and then she said we should just leave the appointment and could always move it if needed. 

I thought to myself, you are showing how little you care about seeing me. I know the basics of my cancer, but am lacking the details. I didn't have any information on the chemotherapies they were thinking I should use. I only knew the immunotherapy because my dad was on it (as he is fighting a different type of cancer). I felt like I was out of the loop on my own cancer journey. And it was something that didn't change... since the Onc never called me that night.

I spent the night thinking she would call. When she didn't, I realized that it felt like she lied to me again. She was completely non-invested in me, what was happening to me, and what I needed to do. All of this was proving she was the wrong Onc for me. And I was slightly nervous because this may be the worst time to not have an Oncologist.

The Next Day, Thursday

Believe it or not, I did get a call on Thursday morning right as my daughter and I were getting on the plane to come home. It was not the doctor, but a Onc nurse. When I told her I was getting on the plane, she was very rude and I think upset at me because I haven't been easy to reach... I did tell them I was on this trip (and told them before I went too - so they knew). I asked her what the call was for and she asked if I set up the Radiologist Oncologist appointment. I assured her I had, but she had to have the day. I couldn't find it fast on my phone (my daughter literally labeled it "cancer stuff" - ha, funny, but I didn't realize it right away). After that, I only heard from her the next day to hear my Genetic Test were negative (just like 2013... not surprising) and wanting to bump up my Onc appointment date. However, by now, I had already decided... enough was enough. I would find a new Oncologist - and get my butt to MD Anderson.   

Blog Post Inspiration:

“Hope” is the thing with feathers by Emily Dickinson

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.


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