BRCA1

[Zelam]

I've just been told I'm brca1 positive but as yet haven't been given any information. As per usual my minds working overtime and I can't stop worrying. Can anyone tell me what it means for my family. Who will have to be tested ie children, siblings. And what sort of time schedule. Thank you x

[Lyndy2]

Hi Zelam

Snap! I am also BRCA I. Your job is to inform your siblings, adult children and wider family that you have tested positive for BRCA and that they have a 50% chance of having the genetic mutation too. Both male and female carriers have a higher than normal risk of cancer.

In my experience that’s all you can do. It’s up to them if/when to test. It’s NOT a death sentence just an additional risk.

In better news, you should respond really well to platinum based chemo. xx

[Zelam in reply to Lyndy2]

Thank you for your reply. I know I shouldn't have but I've got this huge guilt feeling that I'm about to rock their world 😟

[Lyndy2 in reply to Zelam]

You didn’t volunteer to be BRCA and by telling them, you can protect them..that’s the way I try to frame it xx

[Zelam in reply to Lyndy2]

Thank you. That's a good way of looking at it x

[kristinaapril]

Hi Zelam,

I also wanted to mention that if people are BRCA positive they are eligible for increased monitoring. I was speaking to oncologist about mutations (since mum died of OC and had none) and he shared that most people with BRCA mutations never develop OC just have an increased rate than general population.

Kris x

[Lovelybunnies in reply to kristinaapril]

BRICA is a test that all teens should get when we do the HPV vaccinations it is crazy not to considering that getting diagnosed with OC happens more in later stages and we can have a known note in their chart in case they develop any symptoms suspicious for OC

[kristinaapril in reply to Lovelybunnies]

You would think that genetic testing would fall under a preventative health measure but no. I’m from the US so it’s a fight to even get insurance approval. I wasn’t approved before but now that I’m dealing with borderline they’ll approve me. Crazy…

[Kjpip]

Hi Zelam, just to add to Kris's comment about increased monitoring. If you have daughters, they (& you) will be eligible for increased monitoring for breast cancer - any one over 50 will have a yearly mammogram and anyone between 30 & 50 will have a yearly MRI. They can be tested from the age of 18.

I'm brca2 and have 4 daughters (age 12 - 20) and my older 3 are of the opinion that there's no point testing until they're nearer 30 as there's nothing they can do about it yet if they find out they're brca too. At least they know to be extra vigilant about checking their breasts themselves (at their age I don't think they do much to be honest but all I can do is tell them and remind them every so often I suppose)

I felt guilty like you but as Lyndy says, its not our fault!!

Xx

[Trickysite]

If you go ON to the Royal Marsden website they have a very comprehensive download re: BRCa. It will answer your questions. I am BRCA 2 and have had breast cancer 20 years ago.Now OC. I am lucky in that Oc waited until my seventies. My sister had the same diseases and passed at 62. One of the hardest things is worrying about your children. But miracles do happen. Both my sons areBRCA Free! Which means my grandchildren are too. One of my nieces is BRCa2and had a hysterectomy and will have her breasts removed. I tell her to think Angelina Jolie. Being BRCA does means greater risk but is not an absolute 100% cancer guarantee. My very best wishes to you and your family. X

[Zelam in reply to Trickysite]

I will definitely have a look at that. I'm hoping for a miracle too 🤞 Thank you for your reply xx

[Zelam in reply to Zelam]

I have just read the article on the royal Marsden website and found it really helpful. I would recommend it to anyone wanting to know more about brca. Thanks again x

[Cader]

Hi Zelma, My Heart goes out to you. I was knocked off my feet with the news I was BRCA1 positive, last January. You need time to process what it means; be kind to yourself and don’t panic. With guidance from the genetic counselling department associated with our region, we told our teenagers first; they were fab!. I have four siblings, all who have children. We told them next and we all agreed they would have the genetics test and then we would take it from there. I think small steps, gets you there. I hope you have access to the genetics counselling service. Counselling is really the wrong word; they are in a position of knowledge, that’s what they do. They sent me four referenced letters to give to my siblings, for them to give to their doctors to arrange for their genetic tests. They also answered all my questions during an hours telephone appointment. This is where we are at the moment. Personally I have moved to a feeling of acceptance and hope now.

I wish you all the very best X

[Zelam in reply to Cader]

Thank you. That is so helpful. They have mentioned genetic counseling but im not sure when. The letters are a good way of proceeding. So many questions and feelings but I'll try not to panic. Best wishes for your journey x

[AuntyOrange]

Hi Zelam, when I tested positive to the PALB2 gene mutation, I was very nervous about telling my family but they were all grateful that I did. One of my sisters and my brother also tested positive and most of their children have now been tested. Some positive, some negative. Those that have tested positive have thanked me for getting this testing started as they see it as a "positive" and will be extra vigilant in the future. Two of my nieces have had their breasts removed (my brother passed from bc in April) and they will eventually have hysterectomies. I only wish I'd know about it 8 years ago when I could have had preventative surgery. You've done them all a great favour.

Don't feel guilty for something that's beyond your control, feel proud that you have been able to empower your family to prevent this terrible disease from effecting their (and their childrens') future lives.

Best wishes. xxxxxxx

[Zelam in reply to AuntyOrange]

Thank you x I am starting to get my head round it all and seeing it as a positive. Hopefully no more of my family will have to go through what I'm going through. Love and hugs x

[OvacomeSupport Partner My Ovacome Team]

Dear Zelam

Thank you for your post. I’m really sorry to hear that you can’t stop worrying since you’ve been told you are BRCA1 positive. I can see that many members of the forum community have shared their thoughts and experiences with you, which I hope has been helpful.

It’s good to learn from your reply to Cader that your clinical team have mentioned speaking with a specialist genetic counsellor. Your oncologist or clinical nurse specialist should be able to provide clarity about when this appointment may be. I just wanted to provide you with some additional information resources about BRCA which I hope may be of interest at this time and help to answer some of your questions:

- ovarian.org.uk/ovarian-canc... - Our friends at Ovarian Cancer Action have developed a comprehensive ‘Hereditary Hub’ providing lots of information about the genetic aspects relevant to ovarian cancer including BRCA gene changes.

- ovarian.org.uk/ovarian-canc...

- ovarian.org.uk/ovarian-canc...

- ovarian.org.uk/risktool/ - They also created this simple tool to assess the risk of having inherited a gene alteration and considers the current NHS guidelines for genetic testing.

- ovacome.org.uk/ovarian-canc... – In May 2022, Ovacome hosted a webinar with Dr Terri McVeigh (Consultant Clinical Geneticist at the Royal Marsden) about genetic testing. The webinar was recorded and can be found through this link, which may be of interest.

I hope this information is helpful and that you receive an appointment with a genetic counsellor soon. Please know that we are here to support you if you would ever like to talk things through. We can also help you plan or prepare for any upcoming appointments if you think that could be useful. You can send us a message through this forum, email us via [e-mail] or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to assist with questions, provide information resources, or just have a friendly chat.

Best wishes

Annie – Ovacome support