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Have you or a relative had BRCA Testing??

3 replies

whatisforteamum · 09/01/2019 17:42

My Mums consultant has offered it to.her.Mum has survived 11 years since stage 4 primary peritoneal cancer in 2007.
Her.cancer returned in 2012 and after chemo again and.surgery she is still amazing them by being here.
Mum wants.the.test out of curiosity as several.people have had cancer on her side.My Dad died of advanced cancer too.
I would want to know to take pr o active decisions.
Anyone.been tested and how did you feel a about the result?

OP posts:
KingIrving · 09/01/2019 23:15

I tested positive to another cancer inducing genetic mutation. I was positive for NF1 which carries a 59.6% cancer risk with unfavourable prognosis.
At first, I felt in a a very dark place because my head was full of crude facts and statistic with reduced life expectancy and reduces treatment options with little success.
But then I kept reading and actually read a lot about BRCA1 and BRCA 2 mutations as a lot more studies have been done on these than NF1, and the good news is there are a lot of studies proving how the cancer risk can be lowered with a specific lifestyle change. Nothing similar exists for NF1 so I adopted a quite strict anti-cancer diet with a couple of additions such as curcumin and green tea. In NF1 case, because we also develop benign tumours on our skin, the anti-tumoral effect is easier to verify because I noticed a reduction on my cutaneous neurofibromas.

So, yes get your mother or yourself tested and in case of positive result, start reading about the LIBRE ( Lifestyle intervention BREast cancer mutation carrier) studies in Canada, Germany, ....

Valter Longo has a specific program for BRCA carrier valterlongo.com/cancer/

Being proactive in preventing cancer is my goal and helped me overcome my initial fear. The more you read on medical papers and medical books, the more you will feel confident instead of condemned .

Go for it, you have nothing to lose. You will have better screening, MRI instead of mammogram, and you will have an accelerated access if positive. There is a lot of research going on for BRCA mutations. I just wish we had an Angelina Jolie equivalent for NF1

whatisforteamum · 09/01/2019 23:50

Thank you.this is my initial thought.We did watch Dad struggle with cancer that.eventually went to his lungs and finally his brain so last year I needed a cancer break it you see what I mean.I'm sorry you are.in this situation
.Do you ever wish you did not know?I suffer anxiety however I feel I am more at risk of.cancer having several family members with it anyway.

OP posts:
KingIrving · 10/01/2019 00:48

I totally get the cancer break! It just takes over your life, first thing you think about in the morning and last in the evening.

I am very happy and grateful I know, because for these mutation, there is space for intervention. You need to understand what the BRCA gene does and what can be done if it doesn't work properly.
BRCA and NF1 both belong to a group of 65 tumour suppressor genes. The function of these genes if to protect us against specific tumours. Breast and ovarian cancer in the case of BRCA, tumour on the nervous and endocrine system for NF1. If we have a mutation, we are less protected because our body has one weapon less against cancer.
It is important to understand that BRCA doesn't cause cancer. It is a cancer blocker and if mutated, less efficient.
If you know you have the mutation, there are many things you can do to prevent cancer in the first place. Cancer is extremely complicated and there are many pathways that play a role. Even if the BRCA does;t work, you can boost your T killer cells, reduced your DNA damage, increase DNA repair and so on.

The question you need to ask and answer is not every woman with BRCA gets cancer, so the mutation might be the loaded gun, but what pulls the trigger.

Not knowing won't help you. Information will be empowering and allow you to manage and control as much as possible.

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