BRCA...........: Hello All! For a number of days... - My Ovacome

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BRCA...........

HogwartsDK profile image
10 Replies

Hello All!

For a number of days maybe even a couple of weeks I completely forgot that I was waiting on the results of my Genetic Testing....how good is that! But yesterday I realised that they were imminent and rang the Genetic Testing centre to see what the story was. They rang me back today and said the Counsellor that has my case is out until Monday but the girl I spoke to seemed to think that the results were back and that my Counsellor would ring me on Monday and update me!

The question I have for all you lovely ladies is that I got some good news before Christmas as my sister who had Breast Cancer just before I was diagnosed with OC tested negative, can I now assume that the possibility that I am negative is also high? I have this niggling in my brain that tells me that the fact that my sis tested negative doesn't really mean that I will test negative........(comes from a scientific background where I studied Human Genetics albeit a long time ago!!!).....and my level of anxiety for the result has increased multifold today! I will deal with it no matter what the result is but I was wondering if any of you had experiences where there was different results in different family members that had already had a cancer diagnosis?

Thanks in advance for your wisdom!!!

Dx

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HogwartsDK
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10 Replies
GBIRVMIC profile image
GBIRVMIC

Hi D my OC is 3C and my BRCA came back negative.. it took 7 wks for my results! Fingers crossed for you.. can't bear this waiting game. Love Michelle xx

Lyndy profile image
Lyndy

Wish I could say that you would def be in the clear but sadly even if your sister was negative you could still be positive. However don't forget that BRCA doesn't necessarily tell you much about your disease..it just tells you that your genes have a little spelling mistake which made you prone to getting breast or ovarian.

I try to approach it as 'knowledge is power' I can get additional treatments for me and I can help my daughters protect themselves.

Good luck D but you'll cope whichever way it goes xx

minard profile image
minard

As you'll no doubt know, there's a 50% chance of passing on/being diagnosed as BRCA within a family. There's also a "rogue" BRCA status now identified - which I've been diagnosed with since there's no history of cancer in my family so I'm the first one. I'm not really answering your question directly, but I'm afraid that there's no logic in the diagnosis at all, and sometimes you get families where all the females are negative, and the male (yes, they can also be BRCA) are positive. Just as strange and individual as cancer itself.

I was diagnosed as BRCA1 initially, but then this has been reviewed and I'm now considered BRCA VUS (Variant of Unknown Significance). Basically this means that my ovarian cancer has not been caused by my BRCA status, and my risk of developing breast cancer is not raised. So I refused the offer of a double mastectomy. But we still don't know what I'm at risk of!

But even if you are BRCA, there's a real positive. What it has allowed for me is to be considered for BRCA-specific treatments such as Olaparib on the NHS. I'm currently waiting on results for testing on my original tumour sample for this. The genetic team here are really interested in new research ongoing around BRCA - it's complicated but fascinating. So don't lose hope whatever your resulting status x

couls profile image
couls in reply tominard

Hi, I seem to be the same as you, no one in my family has had cancer. But my BRCA came back as VUS and I was considered for a trial with olaparib. But after testing my original tumour I didn't have what they wanted so I am still having to self fund the avastin. I did ask would I be better self funding olaparib rather than avastin , but I was told there would be no point as it wouldn't be any better for me. X

Yoshbosh profile image
Yoshbosh

Hi D, do you know if the BRACA gene is in your family, or are you and your sister the first to be tested? Technically, if it is in your family you could still test positive, even if your sister is negative...I'm remember the grid from science lessons about dominant and recessive genes here! However, if there's no history of cancer in your family, your sister was negative, then hopefully you will be too?Ultimately, the only way you will know is when your counsellor tells you.

Try not to stress out too much about it (easier said than done!). My nan and my auntie both had breast cancer, and I got OC at an early age, but my test came back negative. I guess I just had bad luck!

Yosh xx

HogwartsDK profile image
HogwartsDK in reply toYoshbosh

Hey Yosh!

No sign of it until myself and my sis were diagnosed within months of each other her with breast and me with OC! Hopefully it's just bad luck, did you ever think you would actually hope for bad luck!!! Because if I am positive looking down the barrell of a possible double mastectomy at this point in time I really am not sure if I could take it to be honest!!!

Dx

Rachael47 profile image
Rachael47

I'm waiting for a BRACA test, which I was referred for in August but have heard nothing. Frustrating!

This test is on my to do list as my two cousins on my mothers side have had Breast Cancer since my diagnosis, I keep forgetting to mention it to the oncologist. I have tried to gleam from one if she did the test as she is in USA and got no answer, my other cousin is in UK and I will email her as perhaps bring it up, Its a touchy subject in families but I suspect my english cousin would want to know because she has a daughter. Try not to worry D Monday is almost here so do something to distract yourself for the weekend, all the best

Nicky100 profile image
Nicky100

Hi D,

Sorry to hear that you feeling anxious and I really understand your concerns. I can give you my experience with it but each person really is different so I would not want you to worry either way.

I was do last year with oc and ironically I had the Brca test 2 weeks before and when I hurried my result through it came back as positive. However my sister was negative. Likewise for my aunt and uncle, one positive and one was negative so you really never know.

That probably may not help you but hope it does a little and your worry eases.

If you are still worried, being Brca can hold some 'positives' for treatment. Treatment reacts far better if you have the gene and one is more sensitive to it working. Good luck xx

thesilent1 profile image
thesilent1

Hi, as Lyndy has said, you can't assume that unfortunately. I know a family where 3 sisters tested positive and one negative. Wishing you all the best. Ann x

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