Cancer Scrabble

Grade II, stage III ductal carcinoma with fine needle aspiration showing a cytology of 5 indicating nodal metastases. ER8/8, PR8/8, HER2-. Staged negative there is no evidence of distant metastasis. A neo-adjuvant anthracycline and taxane based chemotherapy regimen has been offered prior to surgery.

And so it goes on.

Neo-adjuvant chemotherapy will comprise epirubicin and cyclophosphomide followed by Docetaxel (Taxotere). Side effects include alopecia, hemorrhagin cystitis and myeloablation. Anti-emitics and steroids will be prescribed.

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Cancer is a vocabulary nightmare. Every word is a Scrabble player’s dream. I am an avid Scrabble player and I cannot wait to use axilla and cytology.

When this all first began Ray and I diligently wrote everything down. We asked how each word was spelled and what it meant. Ray spelled cyclophosphomide almost correctly without having to ask. Just one vowel out; she was quite chuffed with that. I was impressed.

I expect doctors to talk like that. I expect the paperwork to be full of long words with 14 syllables, lots of phs and rarely used consonants. What I hadn’t been prepared for was how quickly and easily we cancer folk begin to talk like that too. We fall easily into conversation about the problems of being triple negative, the pros and cons of Herceptin being licensed for use in the UK only as part of a chemotherapy regime and the 5 and 10 year survival rates associated various combinations of grade, stage and hormone/protein characteristics. For those of us very committed to cancer speak there is a website that has cancer vocabulary flashcards and a multiple choice quiz. I kid you not.

I started off with great intentions. I won’t start talking to folk like a medical text book, thought I. I will remain committed to plain English.Then I found myself discussing my cancer with a medical advisor from a company.

Advisor: Can you tell what cancer it is that you have?

Me: I have a grade II stage III ductal carcinoma in the right breast and axilla. Hormone receptor positive and HER2 negative.

Advisor: Do you have a medical background at all?

Me: No, just cancer and access to the internet.

I sound weird.

I can’t help it.

I don’t talk like this because I want to show off how much I have learnt about my condition or to highlight how others have no idea of what I am going through.  It’s just that the long words and impenetrable definitions are a survival tactic. The sense of control offered by using the right words and sounding like you know what’s going on can’t be underestimated.  It’s empowering. Learning them helps me feel like I am not only part of my multi-disciplinary team but that I have half a chance of leading that team, which as the person whose life is actually at stake seems to me like the right place to be.

It also means a shared vocabulary with other cancer patients. Using the same words reassures us that we are with likeminded folk who understand what we are going through and in the tipsy topsy scary land of cancer, finding someone who speaks the same language can make all the difference.

One thought on “Cancer Scrabble

  1. Love it. Personally I am disappointed that so many of the words are too long for scrabble, and yes don’t we sound like experts? We need to though because people have such misconceptions, and think of breast cancer as one disease, it’s not and it doesn’t affect everybody the same either. I am struggling with the pronounciation!

    Like

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