Could anybody advise on this please?
I am adopted, had no luck trying to trace birth mother. I have no children. I am 49.
I have invasive BC, with some lymph node involvement. Curently having chemo aiming to shrink the tumour before mastectomy and lymph nodes out @ next March. Tumour is quite big, was 8cm but happily now shrunk to 6cm half way thru chemo. HER2 + so will get 18 x herceptin. hormone neg.
I am wondering whether I could get genetic testing, just for my own peace of mind, as to whether cancer is likely to appear in the other breast. If the test was positive I would be asking for double mx.
I understand the tests are probably expensive. Would I be eligible for genetic testing? If not, could it be done privately?
Is it a question for my onc consultant? Or my GP? Or could Macmillan advise?
Hi Catzooo
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June, moderator
Hi Catzoo
I am also 49 was dx at 47 and in same boat as you adopted and so no family history. Would be interested to know if testing could be done as well I am triple negative so no further treatment avail. I will let you know if my GP etc comes back with any answers x
Hi Catzoo, I too am adopted and had some contact with my birth mother a few years ago. When I was diagnosed this April aged 47, I spoke to her and found out she had had bowel cancer a couple of years ago and her sister (my maternal aunt) had had breast cancer when she was 50. My Aunt had undergone all the same treatment as I had and is still going strong now 20 years later - gave me a boost when I heard that. I mentioned all off this to my onc and she did think that my maternal family MAY have a predisposition to cancer but it could just as likely be a coincidence(!). obviously I would like to know the risks for my daughters sake(she is only 10 at the moment) but I’ve been told there is not enough to go on for genetic testing. As I understand it the BRAC1 and BRAC2 gene mutation which are the ones associated with breast cancer would generally cause cancer to occur at a younger age (under 40?). Hope you get some answers though, Em x
Not very good at this, but another user posted this link for me yet I can’t copy it properly for you. It is a protocol for genetic testing. If you have Triple Neg and are under 50 you should be able to get tested without family history. Some hospitals may stick to under 40 or under 45. Def ask your Onc though. I think the stats are something like 10% chance of being BRCA+ if you are TN and under 45.
If yoyu are not TN Catzoo I think it is quite expensive to do privatly but your Onc/BCN should still help you find out how.
I just tried googling ICR and then chose the resarchy looking option - that worked so ignore my hopeles attempts to post the link. I printed it out and took it with when I asked but I did not need it as they immediatly agreed to test me.
90% chance of being negative!
Thanks for your replies Em and Cressida. Looks like I am too old then at 49 for the genetic mutation to appear. Also, happily, not TN so it does seem that I would not be eligible for NHS genetic screening.
I will try to find the costs, and ask my ONC whether she would think I would benefit from knowing.
Hi ladies
they normally only look at your KNOWN family history, so in cases where you were adopted and no history is known they would just look at you alone.
its not a case if being too old to be genetic but more that not enough cancers in the family to warrant screening… Only 20% of high risk families will test positive… High risk is families with four or more BCs in 3 generations or individual with breast and ov ca…
here are the guidelines from the ICR that i gave to cressida…
http://www.icr.ac.uk/research/team\_leaders/Rahman\_Nazneen/Rahman\_Nazneen\_Protocols/Protocols/22778.pdf
private testing can cost between about £1-2000 and even as much as £3000… costs can vary quite a lot and the tests they do also vary
I was adopted im 47 have regularly managram of breast as my real mum and aunt had breast cancer I want genetic screening but don’t know if can as lost contact with my mum