BRCA 1 info on increased risk

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Hi,
I have just found out that I have a BRCA 1 mutation. I was diagnosed in September 2010 at age 34. My dad’s half sister died at 41 after being diagnosed with ovarian cancer at 37. There are no other incidences of breast or ovarian cancer in the family (but there are also few women in that line)

I was wondering if there are any reliable documents/studies about what the increased risks are, and the side effects of risk reducing surgery (early menopause, etc)

Thanks
Jen

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can i ask have you gone private for the testing, or through nhs. wondered what is the criteria for this being carried out particularly if you haven’t any incidences within the family?

hope you find some advice from other ladies who have knowledge/experience of this.

many thanks

TTM xxx

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Hello Jen

So sorry that you find yourself in this boat. I hope your treatment went and continues to go well. I was diagnosed also September 2010, age 36 and found to be BRCA1 positive shortly after diagnosis. Like you there were few women in the line which carries the mutation. I did quite a bit of hunting around on the internet for information and was careful to try to stick to what looked like sensible sites.

This link was useful
cancer.gov/cancertopics/factsheet/Risk/BRCA#a6

and I think it comes from the US National Cancer Institute. My recollection is that it gave me a lot of the info I needed. Take a look here too from the same site

cancer.gov/aboutnci/ncicancerbulletin/archive/2010/012610/page7

and here are some numbers

cancer.stanford.edu/information/geneticsAndCancer/types/herbocs.html

Your medical team should be able to give you information too. There was also a BRCA meeting last autumn organised by the Great Ormond Street Hospital genetics team (I think they deal with genetics for a large London area) and Essex hospitals. If that is your part of the world then I can give you contact details.

I had a bilateral mastectomy and will be having oophorectomy before the summer. In terms of the side effects of risk reducing surgery, this is helpful

www2.breastcancercare.org.uk/sites/default/files/menopausal_symptoms_and_breast_cancer.pdf

and tucked away at the back of that leaflet is information on joint aches and osteoporosis which are also common problems on which you can probably get more information.

Happy to help further if I can,

Claire2010

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You might find these of interest…
breakthrough.org.uk/breast_cancer/family_history/
cancerhelp.cancerresearchuk.org/type/breast-cancer/about/risks/breast-cancer-genes
icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18708.pdf

Hope they help

Lulu x

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Thanks for your links.

TTM, I did have the testing on the NHS. The main criteria that triggered it was my age (34), and the fact that I was grade 3 triple negative. I was told that my dad’s half sister having ovarian cancer at 37 made it more likely to be BRCA 1, which turned out to be the case. I had to ask to be seen at the family history clinic, it wasn’t raised automatically.

Jen

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TTM

Sorry I didn’t see your post about testing criteria… If nobody else in the family has BC then you can be tested if you are diagnosed under 40 with TNBC like Jen, or if you have both breast and ovarian ca. There is a research trial called the genetics of familial breast cancer study which will test if you have bilateral breast cancer (or three breast or ov cas in the family)… Family history of ovarian, prostate and pancreatic cancers can also mean you may fit the criteria for testing using points system referred to as the evans score or Manchester score… Which looks at the age of onset so two sisters having BC in their twenties would give you enough points where as two sisters aged 35 wouldnt.

Lulu x