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I\'m new here and wondering if you can offer me any advice!!

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Re: I\'m new here and wondering if you can offer me any advice!!

My daughter too Kelly,

My daughter is in much the same position as you, she is 31 years old too. I was 33 years old when I was first diagnosed with BC and my sister was 36 years old when she was diagnosed. I have had the genetic tests done and I do have changes in my BRCA2 BUT its known as a missense change so it\'s still not conclusive enough for them to offer my daughter testing!!

Obviously I am very concerned as my daughter approaches the age at which I was diagnosed and she now has an appointment with the genetics team in Oxford in August. We intend to insist that she at least has an ultrasound (which is we understand is better for younger women) to check her breast tissue. Hopefully in the meantime my sister will be tested to see if she has the same change as I have. Have your aunt and great gran been tested?

I suggest that you try to get an appointment at the genetics clinic and ask for some sort of screening purely based on your family history.

Are you having ultrasound and CA125 checks for the ovarian screening?

S x

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Re: I\'m new here and wondering if you can offer me any advice!!

Many thanks for taking the time to reply all of you.

I have been referred to a genetics centre and am waiting to be seen in the next couple of months. They tried to make me wait 6 months to be seen but I\'ve just phoned and pleaded to be seen sooner so miraculously now they have an appointment for me in September!
So I guess I will take it from there.

I admire you ladies that have had the confidence to go for the mastectomy/recon - it is such a big descision but one that obviously has set your minds at rest. I feel worried about breast cancer but more so about ovarian cancer - probably with that being the cancer that my mum has just had.

I have been this week to see a breast care nurse in a family history clinic. She was really helpful - she went through my family history and said (as I already know!) that I am at high risk of both breast and overian cancers. She has put me on a breast screening programme to be called for a mammogram at age 35, just 3 years to wait then - unless I do something sooner.

This isn\'t a great card to be dealt - is it ladies?!. I\'m trying to look at it as being fortunate to be given a warning. Some ladies aren\'t so lucky. At least breasts and ovaries are structures we can live without , unlike lungs, liver etc.

Thank you again for your support.
best wishes to all of you
Kelly x

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Re: I\'m new here and wondering if you can offer me any advice!!

not knowing for sure Hi Kelly

Sorry to hear about all the history of cancer in your family.

Some cancers (like breast cancers) can either have a genetic link or just be \'happenchance\'... so in your family, there\'s either a genetic link, or you\'ve all been VERY unlucky. Given the numbers involved, the \'very unlucky\' explanation is pretty unlikely, so a gene fault is the probable explanation.

BRCA1/BRCA2 are the well know \'faults\', but they are unlikely to be the only ones - so the fact that neither was identified in your mother means either that one of the faults was there but not found, or the gene fault in your family is a different one that has not yet been identified. The difficulty with gene tests at present is that \'not found\' doesn\'t necessarily mean \'all ok\'. Its more of a \'can\'t be sure one way or another\'.

I would suggest that you get referred to a cancer genetics centre, where they will collect all the information your have about your relatives, and your own breast / reproductive health, and calculate your own risk of breast cancer. While this may not feel as concrete a piece of information as knowing one way or another about having a particular genetic fault, its important to remember that people with a known fault don\'t inevitably get breast cancer, and nor do people who have a high risk. But I know what you mean about the worry about \'when will it be me?\' taking up a lot of room in your head!

In my own case, with a strong family history of breast cancer, genetic testing was not possible as there was no-one who had had cancer to test. But based on who had had what and when, my own risk was calculated (greater than 1 in 3), and after discussions of my options I chose to have preventive mastectomies with reconstruction. Three months post-op, I\'m very happy with my decision, and the results of the surgery, but most of all relieved that I don\'t need to worry about breast cancer any more. The \'peace of mind\' has (for me) been well worth all I\'ve been through.

Clearly you are also wondering about oopherectomy, and this brings a slightly different set of considerations - loss of fertility and early menopause - that would need to be thought about. Again, information about pros and cons of all the options to reduce / manage your risk of ovarian cancer would be available via your genetics clinic.

I wish you all the best with your decision making, and a long and healthy future for you and your family

tigger

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Re: I\'m new here and wondering if you can offer me any advice!!

Hi Kelly welcome to the Breast Cancer Care forums.

Your posting could have come from me!!!!

I too am 31 and have a family history of bc, my mum was diagnosed aged 52 three years ago, and two of my aunts died from bc in their 40\'s.
Mum has had a test for the brca 1&2 and unfortunately her test came back negative. Mum and I are under Addenbrooke\'s genetics clinic and they believe the cancers in our family are genetic, and said they will continue screening mum\'s blood against all genes as they are identified.

We don\'t appear to have any ovarian cancer in the family but do have prostate and bowel cancer as well (my mum\'s grandmother died of bowel cancer in her early 40\'s).

All I have been advised to do is to check my self regularly and I will start breast screening at age 35, which is five years before my aunt was diagnosed (she was 40 when they found her cancer).

I feel the same as you, it is so difficult when there is no gene. You don\'t know if you are going to get cancer or not. I would definitely have preferred to have the gene identified so I would know one way or the other.

Have the genetics clinic told you they will organise screening for you? There is also ovarian screening available which they should offer you.

Like you I am thinking about going down the preventative surgery route, especially as I get older.
I had a bit of a scare recently and thought I\'d found a lump, but doctor said all was fine. I do have very lumpy breasts though, so don\'t think self examination would help in my case.

My children are 13 and 11 (boy and girl) and it is so heartbreaking to be in this position.

I don\'t really have any advice to give you, but wanted to say hi and that you are not alone.

If you ask the moderators I am happy for them to pass on my e-mail address to you if you like.

sending big hugs
love
Justine

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Re: I\'m new here and wondering if you can offer me any advice!!

Kelly

Have you been referred to a genetics clinic ? I think from what I have read on here (although am not an expert so may be mistaken) that they can calculate your risk without a gene test, there are lot of other ladies on here in your position who don\'t have a gene test to go off, who may be able to tell you more than me.

In your position I do not know what I would do. I am just waiting for my gene test result, my mum has positive BRAC2.

I think your best bet is to get a referral if you haven\'t already and take it from there. It does take lots of headspace and it took me a good few years to mull things over and make the decision to have the test. I know if my result is positive I will want preventative surgery with recon asap.

Good luck, hope that the other ladies in your postion are able to offer you more information and help than me !

L xxx

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Re: I\'m new here and wondering if you can offer me any advice!!

I\'m new here and wondering if you can offer me any advice!! Hello all

I\'ve been reading your forum for a couple of weeks and taking note of the support and advice you are able to offer one another. Thankgoodness we aren\'t on our own - facing these dilemmas although I wouldn\'t wish it on anyone!

I know I am just at the beginning of a long road where this is concerned and am aware already how much head space it can take up trying to find some answers to the questions.

Basically, I have a strong family history of ovarian and breast cancer. Both my grandma and mum have had ovarian cancer (grandma died at 48 and fortunately (touch wood!!) my mum is 3 years on from diagnosis ant treatment and is doing really well. My greatgrandma and aunt have both had breast cancer.

My mum has had the genetic test done and we have had the results this week that the BRAC1/BRAC2 could not be identified at this time.

So ladies - where do you think that leaves me???

The family history alone tells me there IS a problem. I know that I\'m not happy to just wait and see as, like I\'ve read you others feel, it feels like a time bomb - waiting.
Would you be considering prophylacyic oophrectomy and ?mastctomy/recon in my position.

I know it sounds ridiculous but I think I would have felt happier with a gene + result , then at least we know what we\'re dealing with.

I am 31 years old, married with a 4 year old daughter and a 1 year old son and I so badly want to try to protect myself.

Any thoughts you have I\'d really appreciate.

Good luck to all of you - whatever stage you are at.

Kind regards
Kelly x

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I\'m new here and wondering if you can offer me any advice!!

I\'m new here and wondering if you can offer me any advice!!