I am BRCA 1, Now what do I do?!

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Hi there,

I was recommended this site by a friend. I find it hard to get my head round my situation and think about it very clinically. I can’t really talk to anyone about how I really feel as it upsets myself and others too much.

Having lost my Great Gran, my Gran, Her Sister and most recently my Auntie last March, I got tested for the BRCA genes. It was confirmed a couple of months ago that I am BRCA1.

I am 23 yrs old, only just married, in a job I love, with friends and family who mean the world to me. The prospect of remapping the life I enjoy is scary at times.

My husband and I have opted to have pre-implantation Genetic Diagnosis in order to ensure that our children do not get the gene. This will be a long and invasive process. It is not what I envisaged for my life but it will be worth it if we can stop this gene progressing down our family tree.

I have come to the decision that as soon as we have had a child, I should pursue all of the surgery possible to reduce my risks; both full hyst and Bilat-mx. This too, is a scary concept but I do acknowledge that I am lucky to have this option.

Is there anyone in a similar situation on here as I feel very lonely in these circumstances sometimes.

Thanks :slight_smile:

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Hello lozzy2b

Welcome to the forums. I’m sorry to hear of your situation, this must be a very worrying time for you and your family.
Whilst waiting for support from the users of the site maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information.
The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes
June, moderator

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Hi lozzy2b,

I too have a brca1 gene mutation. There is also a lot of BC throughout my family history. I am slightly older than you as I am 31 am married with 2 boys aged 7 and 4. I found out about the brca1 after I had my boys. I am yet to find out what affect it will have on them in the future , if they choose to be tested, if they pass it on to their children? Daughters.? I would definately have considered the pre-implantation genetic diagnosis if I had known at a younger age.

I know I felt that I was carrying a ticking time bomb when I found out about the gene I am carrying. I have had a double mx and recon just before Xmas and am pleased to say I feel great, look good, and feel in control of my future. I will have my ovaries removed web. I am a bit older. I do feel a bit jealous of my sist who does not have the brca1 as when she has kids she won’t have to worry about it. It is gone from her family line.

It is scary, but you don’t have to rush into anything. Take your time, talk to people and have as many sessions as you can with the genetic counsellors as you need until you are at peace with your choices.
Keep posting on here people are very kind and very helpful.

Strawberry x

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Hi there,

I haven’t got this gene myself but I have a friend who has and she has suggested breastcancergenetics.co.uk If you go onto the contacts page there is a list of all the local support groups and there may be one near you. Don’t try and travel this road alone, it is so much easier with others in a similiar position to support you along the way.

Good luck with your journey.

lbx157

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P.S. Also meant to say that my friend has written a blog which she has kept since first finding out that she carries the gene, you can find it at meandmrbrca1.co.uk

lbx157

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Hi all,

Thank you for your replies, It is very supportive to hear your stories. I greatly appriciate all of these links and resources, I think it is important to hear about other peoples feedback about the journeys they have taken as it puts things into perspective. It also give me the opportunity to get some information from real people and not just facts and figures that you get in the genetics centre leaflets!

I haven’t been offered any councelling following the brca result. I haven’t even got a follow up appointment. I am hopeful that I will hear from the PGD centre soon as they seem to offer support groups and information evenings etc.

Thanks again!

Loz

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Hi Loz

I am also BRCA 1 positive and have found lots of support on the websites mentioned by Lulu earlier.

I am a lot older than you but I have a 27 year old daughter who is also BRCA positive and has decided to have children via PGD. She had a double mastectomy and diep reconstruction at 26 and will have oopherectomy once she has had her children.

There is also The Facing Our Risk of Cancer Empowered (FORCE) website facingourrisk.org and another targetted for young women called Bright Pink bebrightpink.org/.

I don’t know where you live but I am in the process of setting up an outreach support group for FORCE in the Essex area. Let me know if we can help at all.

Best regards
Sharon

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Hi Lozzy2b,
I am a bit (well, quite a bit at 42)older than you, but also have a brca1 mutation. I can see some of my old posts here which I wrote when I was first diagnosed with a brca1 mutation- to be honest, I was devestated. I had already had cancer (sorry, if that scares you). I now have a date for my surgery (bilateral mastectomies), 18th February 2012! The plan is then to have an ooph in Summer. Olympics year! Leap year! Year of the Dragon! This is gonna be a year to remember!

Like Strawberry, I would say that its really important to take your time. Its really important to work out what you want to do. Your feelings will go up and down and may change- I also think there is a bit about any decision that is about ‘facts’ ie getting information, and another bit, about ‘feelings’ ie ‘how do I feel about this?’

My journey went something like this- 'stage 1- accepting the diagnosis, (grief, shock etc, stage 2-dont want any surgery whasoever, dont want cancer risk (this was not a good place to be) stage 3- realisation that I couldnt stay at stage 2 anymore, stage 4- exploring options, stage 5-making a decision, stage 6-accepting surgery and now moving into stage 7-reminding myself I really, really I am going to do this…still working on this one…

I have a daughter, and as well we all know, she will have a 50/50 chance of inheriting the mutation. I cant have more children and too old for PGD. I totally respect your decision to take his route, its like anything to do with brca, a personal choice, but if you want to think about this bit, there is book called ‘living the life, song’ (I can dig out name if you are interested) and what I think the writer (who is a paediatrician)does at the end is to outline really well the issues around PGD. I have an interest in this because when I was seen by genetics with my sister when I was the same age as you, I was told, wrongly, that I wasn’t at risk. My sister can’t move on from her anger that we were wrongly advised, but I look back and wonder what I would have done-would I have had my daughter? Would I have been happy she was a girl? As hard as cancer was and is, I am glad not to have had to face that decision. I also have a theory that along with my ‘mutation’ comes strength and courage and resilience. I have learned too that science does not have all the answers which means that ‘feelings’ are as good a basis for decisions as ‘facts.’

This is a long post as I am feeling emotional!

Question for Lulu - the book positive choices - do you know who it is by? When I went on Amazon, the search engine gave me loads of suggestions, but nothing brca-related?

There are lots of really helpful and supportive ladies here who will help and support you. As an aside, I could really do with some encouragement too, any advice and suggestions about how to actually go through this, get sleep, work, etc, all much appreciated!

Good luck, Rattles xxxx

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Hi rattles

It’s actually called positive results And it’s by joi l Morris and ora k Gordon… Joi is the patient and ora is her doctor, also has other patients experiences… It’s American so not all of it is relevan to the uk but on the whole it is… Not read it all but it’s the kind of book you can nip in and out of a read a wee bit and a wee paragraph there… And it quite big print so my streaming eyes and chemofied brain can cope with it .

Lxxx

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I’m still waiting for my gene results but have to make a decision in the next week or two as to whether to go ahead with radiotherapy or have a mastectomy instead. (The reason being I have just finished chemo and radiotherapy starts in 2-3 weeks time, unless I have surgery which will then have to commence in 6 weeks time).

I have posted a couple of times but not had any response since Monday. Therefore, I have a question for Strawberry. Please can you share your recovery experience with me, especially if you had expanders which is what I have been offered as opposed to flaps. How long were you in hospital, before you went back to work, as I live on my own will I be able to mange do you think? That type of thing.

Thank you.

PS. I don’t mean to highjack this post but as I haven’t had any feedback since Monday, I am panicking a bit. Maybe I am just using the forum wrongly.

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Message for teazle, I am having the same surgery as strawbery, but as she had/I will have bilateral mastectomies the recovery time etc may not be the same - I am not sure whether you have been given this choice? Also, we are having strattice as opposed to LD flaps. Again, this may/may not be the same for you?? Dont want to give you flase information which may scare you and put you off. I would put a post in reconstruction, and also ring one of the lovely nurses on the breast cancer care line. They will be able to give you information based on what you are being offered. Someone else may be able to help too? Good luck.
Message for Lulu, I have found the book, it looks really good-can I ask whether its worth 15 pounds (ouch)?!!!

Thank you, xxx

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Hi rattles £15 is a bit steep… Wonder if you can ask your local library if they can get hold of it for you? Even if they don’t have it themselves they can usually do an inter library transfer and get it for you it maybe cost £1-2… I bought mine off amazon market place it was £7 including postage I see there is a few but still quite expensive but if you have an IPad or kindle you an get the kindle version for £6.34.

I also have another book called pretty is ht charges about a woman’s experience of being brca positive after her mum developed breast and ovarian cancer it’s by Jessica queller.

Lulu x

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Hi Sharon,

Thank you for your post and the website links. I am overwhelmed by the wealth of support and information available; I had no idea that there is so much out there.

It is reassuring to feel like I am not the only one going through this journey. The female family members (those known to carry the gene) have had CA and not survived their battle. My Dad (who the gene is from) doesn’t talk about it; he still finds it hard to deal with loosing my Auntie last year. My sister has mental health problems, hasn’t been screened and wont talk about things either. My mum and my husband are very positive, which is great, although it does sometimes feel that I am isolated in my worries and questions.

I am waiting for our PGD appointment, I rush home everyday hoping the letter will have come but nothing yet.

I live in Hampshire so it is a bit of a way for your group- I wish you every success with this and for your family.

How did your daughter find the operation? How far along is she with PGD?

Thanks again,

Loz

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Hi Rattles,

Thank you for your reply. Thank you in particular for the reassure that it is ok to follow how you feel amd the emphasis on this being a personal journey. At the moment, the diagnosis it self is not something I think about too much, my main concern is making the right choices and following an action plan. I think when it actually comes to having the PGD, then the surgery and screening, especially as I get older and my risk increases, I will definately be more anxious. At the moment, I am keeping myself busy and focusing on the next stage in the process. I am keeping the emotional bits internal, I think I may be in a bit of denial really. I am a nurse by profession and its as though it is happening to someone else as I am thinking very clinically and factually. Sooner or later things will become more real and my emotions will fluctuate I am sure.

Thanks again,
Loz

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I know when I was waiting to be tested and had asked to have a bilateral mx after 1 was diagnosed with the second BC in the opposite side and my surgeon was more keen to treat the cancer as that was the immediate concern. He said he could do the bilateral mx at a later stage and just deal with what we knew and that was that I had a new cancer… So that’s what I did and went for the recommended lumpectomy chemo and radiotherapy… 8 months after surgery I found out I had brca2 but then couldn’t make the decision about the bilateral mastectomy and decided just to continue being screened meantime… But then got a recurrence in my chest muscle nodes.

I don’t regret my decision to wait to have mastectomy and it’s still a possibility but im not in any hurry to have more surgery just yet… Will see what BS, Onc and PS say about it now… But BS not too keen to do more surgery just now.

Rattles the Jessica queller book is called “pretty is what changes”… Stupid bloody autocorrect!

Good luck ladies with the decision making.

Love lulu xxx

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Hi,

Im 22 and BRCA1 too!

Finally found someone in a simalar situation! It is soo hard to find much information on this!

How did all you guys find PGD treatment?
As I hear the rates of having a baby get to full term is very low, and you only get 2 attemps (3 if you go to Guys hospital) I feel I should start the treatment now, have all my children ( I always wanted 3, but I cant see that happening on PGD) and have breats and ovaries removed. But I worry I would not feel like a ‘woman’ any more…

Also I find planning to have a baby in about 2 years (as thats how long I was told it would take from applying for the funding to getting pregnant) very daunting as so much could change in that time.

Really interested to know what you feel about this. And if I can answer any ones questions Ild be happy to help. My mother had the BRCA1 gene, and has had chemo.radio several ops, and finally both risk-reducing surgerys
Please let me know what you think
Sasha

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Hi Sasha and welcome to the BCC forums

It’s great that you have found this thread and can now start to receive some support, in addition our helpliners are on hand for you to call on 0808 800 6000 if you feel it would help to talk any concerns or queries over. Lines are open weekdays 9-5 and Saturday 10-2, they can also talk to you about further support ideas BCC can offer such as ‘One to one support’ so please feel free to call, you can read more about this here:

http://www.breastcancercare.org.uk/breast-cancer-services

Take care

Lucy

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Just replied but stupid post has deleted itself. Boo hiss!

Anyway will try again… Hi lozzy

I’m brca 2 43 and had bc 3 times my daughter is 20 and just been referred for testing.

There are good sources out there for people in your position

The national heredity bc helpline run by Wendy Watson she’s also on facebook and has groups for diff areas in the uk and one for under 25s. She has also recently written a book called I’m still standing. If you google you will find her website and her helpline.

Another good website is brca umbrella which is a forum and blog and also had pre and post reconstruction pics. Very friendly and helpful.

Brca sisterhood is a big facebook group and has member from all over the world but all sharing the same kind of worries and concerns. Again lots of support.

Another good book is called positive choicesand it’s one womans account of her experience of being brca pos.

Another useful book isthe breast reconstruction guidebook and discussed surgery and techniques.

Bcc and macmillan both do good booklets on familial breast cancer and risk reducing surgery too.

Take care x

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Sorry i just edited the above post as i noticed an autocorrect error but its now moved the post to the bottom so its now completely out of synch… However the original reply was from jan 2012.
Lulu