Results of genetic testing.

[Beckyjh]

I found out yesterday that I am not because 1 or 2 positive. Whilst relieved and over the moon for my children and the rest of my family part of me is strangely disappointed! I suppose I wanted a reason for why I got this in the first place, and I know I would maybe have had more treatment options if I needed them in the future. I feel selfish for feeling like this because of course it is the best result - I'm not at higher risk of breast cancer and hopefully my daughter will not have to worry about this in the future.

Hope everyone is doing well in the sunshine xx

Becky

[Tesla_7US]

Becky, congratulations on not having BRCA 1 or 2. Genetic testing can only test for the mutations of which they are currently aware. After I had Breast cancer in 2006 I got tested because I was worried about ovca. At that time they told me I had only a "minute" chance greater than the general population for getting ovca. The counselor lead me to believe that having a hysterectomy was not necessary. I am currently 11 months NED from stage 3C high grade serous epithelial ovca.

[Yoshbosh]

Hi Becky,

I can certainly relate to what you say. I'm also BRCA negative, and whilst relieved for my children and wider family (I have 11 female cousins), I was disappointed for myself. I needed an explanation as to why I got OC at 38, but BRCA wasn't it.

You aren't being selfish, you are just feeling human (and you aren't the only one to feel this way!).

xxx

[Katmal-UK]

Hi Becky Having BRAC2 gene I can totally understand your feeling of relief but also disappointment. I on the other hand felt 'oh that's the reason why' and now have tremendous guilt that I have passed the gene down to my son who will now have to be tested from an earlier age for prostrate/male cancers, and potentially my daughter who has yet to be tested. Then there is my granddaughter and grandsons...... My children don't blame me no more than I blame my mum.... doesn't stop the feelings of guilt though...... Kathy xx

[Spencer2016]

Becky- those feelings are understandable. This cancer messes with your mind too. Does it to all of us. I am Brca positive. I am so angry I wasn't tested earlier- when something could have been done. And have added fear that the mutation is going to continue to mess with my body and produce cancer again and again. They can't take that DNA out with surgery or chemo. So rest assured, its a lose lose situation and you are no worse off than us Brca carriers.

Lots of love,

Anne ❤️

[Purple-iris]

Totally understand how you are feeling . Finally had my test last week and now waiting ( told up to 12 weeks ) for the results . Hoping I'm negative for my beautiful daughter and son but also thoughts creep into my head that if I am BRACA I might at least have an answer to 'why me ! ' and possibly be around a bit longer . Like being on a see saw with all the guilty feelings thrown in ! This disease so messes with your head !

Love and best wishes Kim x

[SarahsJourney in reply to Purple-iris]

Kim, I'm currently waiting to be tested. My health insurance has only just approved after a bit of a battle with the oncologist & my husband who had to persuade them that yes, it was important for us to know. In my case I'm hoping I'm not as I have a 24 year old daughter, & hadn't even realised it may also have consequences for my son. Am hoping I can spare them the anxiety that's BRCA positive result may bring xxx

[thesilent1]

Hi, I'm also Braca negative and felt exactly the same as you. Now, after a discussion with my oncologist at my last consultation, I find myself getting annoyed that there just doesn't seem to be any maintenance drugs for those of us who do not have a Braca gene mutation. I know tgere is Avastin but it has not been approved by NICE foir NHS use and we cant get it here in NI because of that. It makes me feel that somehow the scientists etc are just not interested in this group of patients and it seems so unfair! Sorry, its how I feel! Ann x

[coalole]

I'm BRCA negative and my onc talked about Nariparib as being a drug for use after second line chemo. Article here showing it works on both positive and negative Brca mutations fda.gov/Drugs/InformationOn...

Not currently endorsed by Nice but available on a benevolent basis from the drug company at some hospitals in the UK (Exeter won't give it because of the cost of extra clinic visits and blood tests by my onc says she will refer me to another hospital if necessary).

HTH

Diane