My Ovacome
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BRCA1 just popped my happy balloon

Hi

Well having been on a high as it was my last day at work, I got the dreaded phone call from genetics. I wasn't expecting it so soon as they said 3 months and I was only tested in mid July.

Basically I am BRCA 1 positive. I suppose it answers why I got OC at 46. So now I have the 80% chance of getting breast cancer. Oh yippee. Like I haven't had enough with the OC. 😩

The only good news is that BRCA1 apparently doesn't increase risk of cancer for my two boys although obviously they have a 50:50 chance of inheriting it and then a 50:50 chance of passing it on to any

children they may have.

Feeling quite down. Anyone else out there BRCA1? Have you had treatment/prevention options? Apparently I'll get annual MRI/mammograms but what about drugs?

Advice please lovelies.

Em

X

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Hi.

I was tested positive for BRCA2. 🙁

There is a positive though ( if this wretched disease can have any positives) that BRCA has more treatment options.

Hope you are ok. It's a horrible shock isn't it. Xxxx

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I know there are quite a few members in the past that we're BRCA positive. It is an awful shock, there's a couple of ladies at our support group at the moment who are waiting for or thinking about preventative mastectomies. They've said it's like being diagnosed all ages vet again. Why don't you give the ovacome helpline a ring? Or get in touch with Target Ovarian. They have support for a BRCA diagnosis. Good luck. xx

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Hello Em

After the initial shock I was actually quite relieved to be BRCA 1. It gave me a reason for my cancer and offered many more treatment options. Also many BRCA ladies have a better response to platinum chemo.

I would check again what your personal risk of BC might be. I was told that my genetic fault is in the middle and more likely to give an OC risk rather than BC. I've opted for annual screening for now at least. I would also check the risk for male BRCA carriers...I don't think it is completely negligible.

One of my concerns was about recurrence..would my BRCA status mean it would definitely come back? Apparently not according to my geneticist...so every cloud...xx

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Thank you ladies. I am feeling that i do have at least a reason for having OC so young rather than it being some random thing.

I can see the genetics team apparently and talk to them in more depth.

Still slightly in shock about the future I suppose...

Em

X

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I know it's a shock but the only positive is that it gives more treatment options - parp inhibitors seem to be successful for lots of women.

All the best x

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Em, I'm sorry re your BRCA result. I was also told I'm BRCA1 positive, but only in my tumour not my blood. However the positive to take from this is the fact that the PARP inhibitors, such as Olaparib are apparently getting really good results with OC. I know it's only a small win, but my husband & I met with PP (Cancer specialist) a few days ago & it was one of the first things she commented on. Wishing you the best of luck with other aspects.

Sarah xxx

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Just read your post about your trip. Great! So great to have someone not dismiss the idea of diet and alternative efforts. I'd love to know how you get on and what is suggested.

X

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Can totally understand your shock, I felt exactly the same! My biggest worry was my children, daughter, thankfully negative, and son, not yet tested but both the gynae oncologist and onc said it was a good thing for me, patients normally more responsive to frontline treatment and more treatment options for possible recurrence. There are risks for you sons if + but sure your geneticist will discuss in depth. And i totally agree with Lyndy, at least I know why I have this damn cancer and know I couldn't have prevented it in any way. Good luck, stay strong xx

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Morning Em,

Sorry you're going through this, it's all a bit of a shock isn't it. Myself and my twin are both part of the elite BRCA1 group! Inherited from our dad. I was diagnosed with breast cancer at 37, my sister going through OC now (on a recurrence at the mo, she was diagnosed nearly 3 years ago) but she had a full mastectomy and reconstruction also, as a preventative measure, about a year ago. With regards to BC, I went for a full mastectomy and reconstruction. That was my best option at that time. I'm sure things have moved on a lot since then (this was 14 years ago). With regards to your sons carrying the genes, yes, the risk is there, my eldest daughter (23) is currently waiting to hear if she's going to be part of our group! Sorry I haven't any other advice on drugs tho. Good luck with any future treatment you may have! Xxx

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Thanks. Your story is really helpful and fab your BC was so long ago. Can I ask if u managed to escape OC?

X

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Not had OC, had everything taken away when I was about 41 to reduce the risk. X

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Hi Em, sorry to hear about your diagnosis, it is certainly a double blow after having OC. I was diagnosed with BRCA 2 last year which came as a complete shock as we had no family history of cancer at all. I was referred to a specialist centre and like you say have had annual mammogram/scan. I saw a breast surgeon but as I was a higher grade than yourself (3c) she didn't advocate preventative surgery but said I could go back in 2 years if I was still clear. I have recently discussed preventative drugs with my onc and just waiting to get a prescription off my GP for Tamoxifen. Best wishes. Xx

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Hi Em. I am sorry you feel this way just now. But it will pass if you get the right information and don't panic! I am BRCA too but was told by s superb (second opinion ) Consultant at Hammersmith that you should also see this as your 'friend', that being that you will be much more sensitive to any treatment they give you. Chemo does not like BRCA! So keep your chin up. You have options with prophylactic breast surgery - as I am currently waying up, and please do also remember that there are many BRCA + women who never get breast cancer too, so I am trying to consider these up to stop the panic.

I know it seems and feels bleak to have but there really are more treatment options now if you have the gene mutation so do not give up!

All my love Nicky xx

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I know what you mean. I've described it to people as a double edged sword. I was actually a bit worried that if I wasn't BRCA were there enough effective treatments! I'm now worrying about the speed of recurrence and criteria for getting olaparib etc. Also the cost if the NHS won't play ball....

Bang goes the new garage plan! 🙄

Think I'm hitting the angry stage now!

X

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It is so completely normal and fine to feel as you do! We have all been there and return there too. Have you had a recurrence already or have you just had a 1st chemo?

Have you looked at Rucaparib and if you fulfill the criteria for that? There are other PARPS available and if Niraparib gets the green light in December, we may be able to have it. The issue will be whether we get it on the NHS or not...I have resorted to crowdfunding, as it will be the only way I try to pay for Olaparib. This is proving successful, but I still have a way to go. But perhaps you could try something similar? If I can help at all, please ask... I hated to ask strangers to help me, but do you know, I have been blown away by the response and people will WANT to help you too. It helps them feel they are doing something constructive. Anyway enough of my ramble!

Nicky x

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To answer your other question, about surgery or drugs, you will find 'choices within choices' as I describe it! I have gone down the road myself recently. Meet with your generic counsellor and see what they say. They have great knowledge. I also decided to meet with the beast surgeon to see what his advice would be and what my options were, so I would do this! It does not commit you to anything, but you might be surprised by how much stronger you feel in arming yourself with knowledge and information! They are there to help you. The Breast nurses also give amazing advice, and you will be given one to talk to if you ask for it.

As far as I know there not any drugs available (in this country) perhaps due to the hormone risk. You can opt for screening every year or you can have various options of voluntary surgery. Again, there are many options. Try not to panic.

My choices have only been delayed as my OC has now come back, so as my surgeon said, any breast/BRCA choices can go on a back-burner for now!

Am rambling again... but hope that helps you.

Lots of love Nicky xx

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Thank you. Very useful ramblings so don't stop.

I've done the post cricket match pick up and stuffed my face with two giant double choc cookies (refined sugar and fat are so delicious) and am off to take out my anger on the bushes in the garden. They may get a very drastic haircut but it will make me feel better!

Im sure I'll have more questions to ask you lovely ladies post garden decimation... 🌿🔪

Xx

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