I know from the title, medical acronyms are worse than the ones I used in education.  Research journals are different as they define the acronym once at the first point of use so better write it down as it may not show up again until three paragraphs later.

TNBC = Triple Negative Breast Cancer – my official diagnosis August 3, 2017.  I believe that is that my new cancer anniversary?  I’ll have to remember to send myself flowers on that day.  My previous anniversary date for ER = Estrogen Receptive Cancer was September 11, 1998.  Way easier to remember.  That all went to shit on August 3.

Quick lesson:  Estrogen Receptive cancer is just that.  The tumor after the biopsy is tested and the specimen tests positive for the fuel that makes most breast cancers grow: estrogen, progesterone and human epideral growth factor receptor 2 (HER 2).

Triple Negative is a high risk breast cancer that lacks the 3 receptors mentioned above thus the term triple negative.  That being said, targeted chemotherapy is more aggressive, relatively new in determining success rates and the after chemo/surgery protocols do not include 5-10 years of the estrogen-sucking meds that most women are on.  Interestingly enough, I was pretty happy when I heard the diagnoses as I thought it was less devastating and a better outcome than what I had before.  The 5 year meds come with pretty severe side effects but hindsight and now some research tells me I would’ve been better off with that diagnosis.  What a moron!

Researching TNBC is a bitch.  One article said the TNBC subtype did not appear in any peer-reviewed journals until 2006.  Analysis of data began in early 2014.  I made the mistake of going on websites, THEN traveling down BLOGs which led me to most of the women with TNBC (quick what is that?) having metastatic disease – cancer that has spread past the breast.  I mentioned this to my husband, as he saw me with my  nose in my iPad so I told him what I was reading.  He wasn’t too happy.  The problem is I don’t know what I don’t know and I’m not having much luck dispelling any of my fears or creating questions for my doctor.

When I was first diagnosed in 1998, Linda McCartney had just died from breast cancer that had metastasized to her liver.   I went on the internet and the first website link featured was a book titled “I Don’t Buy Green Bananas.”  (Don’t worry it took me a while too), but in that moment I laughed…..I scared myself so much that I didn’t go back and just looked at the publications my surgeon gave me.  At the time I was so numb from the news that the first thing I asked about was a second opinion. He said the type of cancer I had was “textbook” and “like having a hang nail.”  He thought it was a waste of time to get a second opinion because of the diagnoses – Stage 1, Ductal Carcinoma In Situ = DCIS, and the current treatment of lumpectomy and radiation were the standard (textbook) and I was in excellent hands with my oncologist Dr. P.   Yet my oncologist threw in 6 treatments of chemotherapy (one 20 minute infusion every other week of oral meds) because of my age (younger women tend to have more aggressive cancer) and wanted to cover all bases.  So textbook and hangnail made me feel so much better!   :{

Fast forward to 2017….TNBC and if the internet was scary then, the info I was reading quickly took me down the path of all the bad news first.  I found a good website (thanks to my cousin Dr. Houskamp) scholar.google.com which has a little more current research and articles on searches.  I think the problem here lies with me and also that there is not a lot of articles/publications yet on this topic.  YET, I tend to click the most negative, worst-case-scenarios for some reason.  Last night I was reading about two women, both in their late thirties (and Ashkenazi Jews who have a higher prevalence of BC) who were living with metastatic TNBC for over a decade.  Unfortunately their blogs ended when they died.  It was the most depressing thing leaving me scared and vulnerable to all the what ifs I was reading.  But like the news now, I refuse to watch national news for any length of time except to see that devastatingly handsome David Muir for a few minutes and then I’m on to something else.  Usually QVC scoping out “Sandy’s Favorite Things” to give at Christmas.   :}

One thing that seems to be consistent in my search is that TNBC is a relatively new of strain breast cancer (mentioned as the next new frontier in research) with up to 6 distinct subtypes, most of which do not have unique therapeutic treatment approaches.  From my perspective, the approach is to kill the MF’s with the “mother of all chemotherapies” and monitor for the next 3 years for recurrence.  It accounts for approximately 20% of the breast cancers and mentioned before is more common in younger, African American and Latino women.  Here’s your chance to laugh with me!  I think I’ll play the lottery tomorrow.

This morning I took my research list of questions to my treatment appointment.  After blood counts are taken I usually see my Dr. or a Physician Assistant.  I was glad when Dr. P came in.  I could sympathize with him as I unloaded all my newfound fears and somewhat faulty statements.  He told me to unwind what I just said go over what I have.  Here’s what I asked him to confirm:

  1.  TNBC has the greatest chance of recurrence in the first three years.    YES
  2.  If there is a chance of recurrence it will not be in the other breast, it will likely be at a distance site (this is called metastatic disease remember).  YES   *next blog will be about convincing my surgeon to do a bilateral mastectomy and remove my totally healthy right breast!)
  3. The most prominent site for recurrence is the Central Nervous System (comfortingly called that but it means the BRAIN).  NO – primary lungs and liver first, second place.  Don’t know if that makes me feel any better.
  4. How will I know what’s next in the form of aftercare to chase these other body parts.  Since I’m eliminating two of them on February 22, what clinical trials are going on for my particular case because I’m having a hard time finding anything online that relates to  62 year old white female, BRCA 1 and 2 negative with a cancer not normally found in people like me.  He said he would try to put me in touch with someone in his practice and look at a clinical trial.

As he’s talking me down the ledge, he said that we will not know how effective the chemotherapy treatment was until the surgeon gets “the breasts in the bucket” to test all the tissue.  The good news is that the August PET and MRI show no lymph node involvement as of yet.  All this will be answered shortly after surgery on February 22 when I get Barbie boobs.  I just hope all these chemicals infused in my bloodstream are killing these TNBC fuckers.

Aside note and maybe some fun:  Have you ever wondered how they name drugs?  For example one of my chemo drugs is called Cytoxan.  Really?  Why not name it something that sounds better  – like how did they come up with Lyrica for nerve pain, fibromyalgia.  FTLOG (For The Love of God)!!!!

CNN article:  How They Name Drugs

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2 thoughts on “TN v. ER Breast Cancer

  1. Very well written Sandy. A perfect example of the frustration breast cancer “victims” go through trying to understand our diagnosis, treatment and recovery. The initial diagnosis is the beginning of a rollercoaster ride that goes so fast at times everything becomes a blur. Trying to slow the ride down to ask questions doesn’t always mean you get answers. By the time you come to a stop or the end of treatment, you realize how many unanswered questions and concerns you had and it’s too late for any change. Trusting the oncology staff, doing you’re own research like you’re doing, staying in good health and having faith in God…that’s what works for me. Count your blessings….I count you as one of my blessings 😊

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    1. Thank you Nina…..I was beside myself the other night. My oncologist admitted that about 70% of his patients get on this zealously of the soapbox, wear the badge of cancer (and pink!!) and are the ones that whine the most. I need to reach out to him when I get more info. It’s weird though when they told be it was TN, they didn’t offer up a lot of information other what it is defined as. Maybe that’s bedside manner, wait until you’re asked because a lot of it isn’t promising or good news….
      I love having you on my side. Thank you for being there….

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