Brca test

[triplets]

Hi went up to Guys yesterday for the test, spent 40 mins talking to a lovely lady called Sarah. She was explaining about the good results if you do have a faulty gene and are given parts. Sort of leaves you with a dilemma do you want to be positive or negative? She also said that if you do carry a faulty brca gene the risk of going on to get breast cancer is 50%. Has anyone else been told that?

[triplets]

Given parps!

[Hidden]

I was told that if I was BRCA1/2 it would increase my odds of getting breast cancer by 50%. Parb inhibitors such as Niraparib are available to Non-brca ladies here in the UK

[triplets in reply to Hidden]

Hi Lyn thanks for your reply. It’s all interesting and scary at the same time. Hope you are keeping well. x

[Hidden in reply to triplets]

I dont spend too much time worrying over something I cant change. My mother had multiple sclerosis, I am one of 4 children and we were told that our risk increased by 50% of getting MS. None of us did. I don't let statistics ruin my here and now. x

[Clar0805]

I found out I had the brca1 mutation and it was a total surprise as we’d not had any other cases of ovarian cancer in the family and just one case of breast cancer. I was told I’d have an 85% of breast cancer but I’m in my 40s and the percentage is higher if you’re younger. When I was given my results I was crying because I have 3 daughters who could have inherited my naff gene but my oncologist was smiling saying this gave me better odds and it’s meant I could have Olaparib after frontline treatment. Basically it’s a double edged sword. They’ve done a lot of research on genetic cancers so a lot of the newer treatments are targeted at these cancers but then obvious downside is you’re more prone to get other cancers and it will effect other family members. I think best way to look at it is that “it is what it is” you can’t change the result but knowledge is power and will help with treatment options. Good luck going forward xx

[Lyndy]

Again this needs qualification because- yes my risk of BC is higher than normal being BRCA I BUT by the time I found out my risk was already falling due to my age... so I would ask further questions xx

[triplets]

Thank you ladies, I am not unduly worried for myself, and thank God my triplets are from donated eggs. I do though have four brothers who each have daughters. What will be will be. x

[Katmal-UK]

Hi. Having the BRAC gene is a double edged sword in terms of treatment, what it means for family and the greater risk of breast cancer. I dont recall the % but was offered a double mastectomy when I was told I have BRAC2 and have regular mammograms (originally every 18 months but now annually). xx

[triplets]

Hi yes that’s what she said that I would be offered annual mammograms, I have just had one a month ago, all good. No point in worrying, wait for the result and take it from there. Hope you are enjoying the summer and keeping well. x

[Tesla_7US]

Triplets, I had breast cancer nearly 14 years ago. Blood test then said I was NOT Germline (hereditary) BRCA. Diagnosed with HSE OC 3C 9 years after Breast Cancer and tumor tissue tested somatic (acquired) BRCA1 positive. This is not unusual at all. Olaparib is the silver lining for BRCA. Do not be afraid. Get answers and be prepared so you can protect yourself and family.

[ZenaJ]

I don't know if it depends on age but I was told there was less risk for me to get breast cancer now I've had ovarian so was offered yearly mammograms. Luckily, no other member of my family carries the gene but I was told my daughter would have been offered a double mastectomy and hysterectomy if she did have the gene. I was also told I have a higher risk of skin cancer and pancreatic cancer but although there is a higher risk it didn't mean I would get either.

As none of my family have the gene I don't tend to worry about it at all as I can't do anything about it. (I do use the factor 50 more often though). I think there is a better chance if you carry the gene if you get a recurrence. There's a drug that is more effective. So that's good news.

Good luck with it. Zena xx

[Lindaura]

Once you have the misfortune of getting this disease, because of the BRCA mutations, you have the advantage of being more receptive to treatment. The disease will still be relentless and no matter what the results of your test, this is a battle you have to keep fighting.

My sister had breast cancer 15 years ago, and was fine until last year, then it suddenly came back very aggressively. Fortunately, she was treated aggressively, but also tested positive for BRCA 1. Myself, just recovering from first line for OC, and my siblings and my mother were all tested.

Only my daughter and myself tested positive for BRCA 1.

My daughter has is 42 years old, and has had the BSO surgery to prevent OC, but is scheduled for a double mastectomy with reconstruction to avoid breast cancer.

Breast cancer is very insidious and is one of the main cancers that spreads to the bone. You do not want to get that either.

So if you don’t want that threat looming over you, you can decide to have this radical treatment.

I am still battling present OC, so I do not plan to have breast surgery, but if I get past this recent set back , and start Olaparib and it works for me, it should also work to stop breast cancer, although they are still in trials for that.

My sister suffered mightily from the effects of her cancer, so that is why my daughter is anxious for surgery.

On the bright side, you may not test positive and you may have better luck fending off this disease anyway.

If you do test positive, make sure your siblings get tested.

Oh yeah, the mutation must have come through my father, but he had died horribly in his 40s from a gioblasoma brain tumour, so we could not test him.

Rotten luck.

Best wishes for good luck to you though,

Laura

[delia2]

I have a different mutation PALB2 that gives me a 58% chance of having breast cancer and also increases the risk of pancreatic and melanoma. One daughter and one sister turned out positive too. I’m in the US and we are given a test every six months for breast cancer, alternating mammograms and breast mri. They think PARP inhibitors should work well for us but there’s no research on it. The mutation is also related to DNA repair; it works with the BRCA 2 gene.

[triplets]

Thanks you all for your interesting posts. I am not going to let myself worry about it. I lost my son 25 years ago, Matthew was 14 a sudden unexplained death. Nothing can ever be as awful. Love to you all. x

[Hidden]

Hi triplets. I don't have the BRCA gene but I know someone who has. Probably when she was in her 40s, she had both breast cancer and OC. Just the once for both and they never returned. My understanding is that if you have the BRCA gene, you're more likely to get both of those cancers but you're more likely to survive than BRCA neg.

Remember Angelina Jolie. She has BRCA in her family & opted for breast removal.

Good luck. Pauline.

[Jo-Jo1-UK]

Yes it really is a tough one because a BRCA diagnosis has an impact for family members and yourself for breast ca, my risk was very high and I’m opting for risk reducing surgery. On the other hand like others have said BRCA patients do tend to respond better to treatment and have more treatment options open to them. Good luck with your results! Jo xx

[Nicky100]

Hi Triplets. Yes. Bring told that is quite common. The test, and things in the media can make you fearful, but actually in terms of treatment options, having the gene (I’m guessing you haven’t had a result yet?) can really open up your treatment options. I was told it could be ‘your friend’, but I’d wait until you get a result. I wish you the best of luck x Nicky

[triplets]

Yes going to be about 7/8 weeks for the result.