I'm Jojogingerhead, a 31 year old artist & musician based in Brighton (UK) satirically documenting the highs and lows of my secondary triple negative breast cancer diagnosis. Trying to see the light in a dark and scary situation without using the words fight, battle, journey or survivor.
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Computer says no (I’m not a BRCA mutant)
Today I received my BRCA1/2 gene test results, they were negative. As I hurriedly opened the letter from the geneticist at Guys Hospital and took in the the word ‘negative’, I had that sketch from Little Britain playing in my head that goes ‘computer says no’.
I had a gut feeling that this would be the case and I’m not quite sure how I feel about it, I guess I’m kind of indifferent. Had the results come back positive, I could have been entered into clinical trials involving PARP inhibitor drugs. Plus I would have some sort of answer as to why cancer seems to love me so much. Now I just feel like it’s one more bit of treatment that I can’t have and my options are running out.
I know I definitely have some sort of gene mutation. My dad passed away from lung cancer at the age of 54, my mum survived breast cancer at the age of 56 and I’ve had two different types of breast cancer in less than a year at the age of 31. That’s too much of a coincidence just to be bad luck. I also don’t doubt that whatever gene mutation I have is an environmental factor caused by carcinogens. Whether it was passed onto me by my parents or developed over the course of my life, I’ll probably never know.
There are other gene mutations that modern science have developed tests for, I shall be looking into getting a full genetic screening. Although I’m not really sure that there are any treatments developed to target such mutations if I get a positive result.
So unfortunately for now in the apathetic and indifferent words of Carol Beer from Little Britain, ‘computer says no’.
Thought provoking as ever. I am currently ‘negotiating’ with the NHS to get the BRCA gene test and their computer is saying no. I don’t score enough ‘points’ to qualify, even though the reason I don’t is because my Mum was initially wrongly diagnosed! Makes no sense. Hope you get your full genetic screen, as you say the answers may not help but you never know and my belief is it is always better to be as informed as possible.
Hi Becky, I was in exactly the same situation as you last year. I was ER+/HER2+, my mother had triple negative breast cancer and father died from lung cancer but I didn’t score enough points to get tested on the NHS. I won’t get a full genetic screen on the NHS, I only got a full BRCA 1/2 one because my breast cancer came back as triple negative and increased me score. There are a few more genes mutations you can be tested for but you may have to go private. This webpage is useful: http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/risks/breast-cancer-genes
Also the NICE guidelines on genetic testing are here if it’s of any use: https://www.nice.org.uk/guidance/cg164/documents/familial-breast-cancer-update-nice-version2
I wish you all the best with getting the tests that you need x
Thank you I’ll certainly check those links out. Your blog is so refreshing, I don’t have cancer myself but my Mum sadly passed away from cancer in 1996 and I get so fed up with the language used around cancer. It is not a battle/fight that you win or lose, your blog is insightful, funny, entertaining and informative. Brilliant writing in it’s own right regardless of your cancer diagnosis. THANK YOU x
I’m so sorry to hear about your mum, it’s such a devastating disease, well any disease is devastating. I also dislike the use of words battle/fight etc but understand why people use them. It does feel like a fight sometimes, even if it’s just to get the treatment you need!
Thank you for your lovely comments about my blog, makes me want to keep blogging! Take care x