Do I want to know?

Hi

I was Dx with IBC in August 08 and had a bi lateral MX. I had my ovaries removed 10 years ago.

There is a strong family history of BC i.e. Mum, aunt x 2,and cousin, all of whom have since died.

My sister is obviously worried for herself, as I am for my 3 daughters and 3 granddaughters. She has been told by the genetics clinic that if I have the blood test/DNA tesing done they can see if any faults are also in her DNA.

What is concerning me is just how much do they tell you if there is a faulty gene? I vaguely remember being told by my oncologist back at the beginning that they would tell me the % likelyhood of it coming back, and to be honest I don’t want to know.

I am torn. I know I should have this testing done for my famly, but on a personal level I need to believe that I have a good chance of it never returning.

Please help

Andie

Hi Andie - I’ve had the brac testing which was negative… I was just told that no percentages or anything like that… But some of the others who were given positive results might have been told more…

So sorry it is a tough decision to make…

Theresa x

Hi
I am waiting for my results due in August (I was told they take 4 months) I did it for my niece, cos she lost her Mum (my sister) when she was 3. I was told if I had the faulty gene she could be tested and if positive she could have close check ups (MRI and not mammogram, which don’t work so well on younger women) at an early age and so they could catch it very early, if it came. My sons could also pass it on to their daughters. There were no talk about percentages, except women with faulty gene has a 80% chance of developing bc during her life time compared to 10% in other women.
Hope this helps you
Maria

Hi Andie

Im a brca 2 carrier, breast cancer patient and work in breast cancer genetics so hopefully i can shed a wee bit of light to what happens at my unit.

basically you get assessed by the genetics department to assess the risk and see if you would fit the criteria for testing… and you would

the criteria is slightly different in England to Scotland eg we would only offer testing if the manchester score was over 20… there are pros and cons to being tested…

some people feel that they want to know because they want to take active steps like prophylactic mastectomy and ovary removal, others feel that they would be worrying having it hanging over their head…

you normally would have 2 counselling appointments before getting bloods tested dont feel obliged to do it for others you need to decided if you would want to know for yourself first.

from a high risk family your other family members can get screened without having the genetic testing too

here is the guidelines for screening for high risk families in england…
icr.ac.uk/research/research_sections/cancer_genetics/cancer_genetics_teams/genetic_susceptibility/fbc_protocols/12906.pdf

heres the criteria for genetic testing for england…
icr.ac.uk/research/research_sections/cancer_genetics/cancer_genetics_teams/genetic_susceptibility/fbc_protocols/12904.pdf

and this information about a study for screening women under the age of 40 with a strong family history of BC
public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=7404

you can also have blood stored without it being tested so that its stored for future use… not to be morbid but if anything were to happen to you and nobody else in the family had been affected by breast cancer then they could use your blood to test or do research on in the future, but wouldnt test it in your lifetime if tahts what you wished.

somethings you may want to consider reagrding genetic testing is how you would feel if it was positive… and also how you would feel if it was negative.

some people feel disapppointed if its negative because it was a ‘reason’ for getting cancer, some people feel guilty when they find they are a carrier and worry they may have passed it on to other family members.

you mention your a mum and a granny… if you test positive your daughters could then have whats called a predictive test… where it looks for the specific mutation that has been found… some of you daughters may want to know others may not.

your grand daughters would only be offered testing when they are over 18 and able to make the decision about testing for themselves.

if you find out your a brca carrier then you will normally be informed of the general risk of breast and ovarian cancers… they cannot predict recurrence in an individual person but they can tell you the likelyhood and this virtually pops up any time you key in brca to a search engine.

Lulu x

Thank you so much for you answers.I will give careful thought to the new information you have given me

Andie