to ask my mum about coming for genetic testing for breast cancer?

[LargeLatte]

Sorry, this is so long. Have been wondering about this for ages but am galvanized by wine tonight.

My mum's mother died from breast cancer (first diagnosed at 70 but was on Tamoxifen as a preventative for years before that as part of a clinical trial), and my mum was diagnosed in her 40s.

My mum's sister is cancer-free, and I had thought that while it stayed that way I wouldn't want to be tested.

A recent conversation with a friend who was pretty mortified about my relaxed attitude has made me doubt my plan.

Right now I just check myself regularly and if I have a problem I am seen within 2 weeks at local hospital. They have seen me a few times as I do get lumps (as did my mum, and her mum :/) and they have been brilliant.

I think my options are to carry on as I am, or be referred to their high risk unit (which I am not sure if I qualify) for ultrasound screening, or request genetic screening, which my mum would have to be a part of.

I am really looking for people with experience, or anyone who knows where I can go for more info. Or any alternative options?

My over riding feeling is that I don't want to rock the boat and my family has been through enough already, but that seems a lot like burying my head in the sand. But on the other hand this affects me, my mum (since she did not have a mastectomy and finding she has the gene may indicate a mastectomy and possible hysterectomy, and she obvs doesn't want to know or she would have asked to be tested wouldn't she?), her sister, and then I guess my kids if I do go ahead and have surgery - I just don't feel comfortable willfully messing with the lives of other people.

Why don't you post on tamoxifen thread in general health as people there will know more about testing etc.

Hi there
Not sure that AIBU is the best place of this - do let us know f you'd like us to move this to health?
Thanks

I used to work in a breast clinic.

I reckon with your history you'd probably be at a mild to moderately increased risk of breast cancer with 2 affected first degree relatives. That said your granny was pretty old (relatively) at diagnosis which makes it more likely her breast cancer was caused by chance.

You are right that you couldn't have genetic testing without either your Mum or granny (ie an affected relative) being tested first so that they know what gene fault (if any) they'd be looking for.

But even if your Mum doesn't want to do this it shouldn't stop you asking to be referred to the breast clinic to talk through your family history. even if they cannot test you, if you fit the criteria for moderately increased risk of breast cancer you'd be eligible for early screening (annual mammogram and clinical examination for 35 to 50)

Hope that helps

How old are you?They are unlikely to do anything if you are under 40.
I have had breast cancer and an aunt [mum's sister] and a cousin [mum's brother's dd] died of it-aunty in her 70's and cousin in her 50's.I was told I didn't need a test [was dx a few years later] and when dd asked [aged 35] she was told she wouldn't be eligible until she was over 40.
Talk to your Gp about it-you dont need to worry until you know :)

It depends on what your relationship is like with your mum. My mum had BC aged 32 (and is still here, now 68). About 15 years ago we went for genetic testing and it didn't show anything at that time although research constantly changes.

When I hit 40 I got into the early mammogram (sp?) system and now have one every year until 50 when I will go into the normal screening routine.

I can see why you are reluctant to discuss it so maybe concentrate on yourself if you don't feel comfortable with the possible implications of genetic testing.

thegreylady the most recent recommendations (unless things have changed since I changed jobs) was for screening from 5 years before the age of the youngest affected family member. Although mammograms aren't done before the age of 35 unless you actually have breast cancer.

YellowDinosaur - thanks - mild is what I thought the level was based on the reading I had done, with my auntie (my mum's sister) really being key to it (she has never had cancer). I think it was my friend's reaction, almost angry, that made me question myself as she was talking about me not doing the right thing for my children, not being able to guarantee I'd be around for them etc.

At my last appointment at the clinic they did say they were setting up a special clinic for folk like me, so maybe I should ask GP to find out more about that.

Thanks all - your calm and rational responses have helped a lot.

And sorry MNHQ, I was shamelessly posting in a high traffic area. Feel free to move it, especially as it may help others in a similar situation in the future.

Based on what you've said, you may not be offered genetic testing anyway. Going off my own experience (breast cancer at 27, my maternal aunty having it in her 40?s) we didn't meet the criteria for the tests as the family history wasn't strong enough. If my mum had it, we would have.

It's worth looking into but please be aware that sometimes it can be worse being told 'no' than wondering. I wish we'd never asked because now I have no clue how to get privately tested and I DO want to know whether I have any of the genes because it increases my chances of the cancer coming back.

Even though you have already had cancer at that age you are still not eligible?? That must be awful for you.

I am finding it quite reassuring that I am not BU to just carry on as I am -in fact that sounds quite sensible for now.

I'm 31 btw. As I said before the local breast clinic is one of the best in the country and have been great for me - very quick to see me, and last time the consultant came into the ultrasound to verify everything was OK on the spot. I wonder if I can contact them directly by email / post to ask what they suggest.

having been in the same situation, I decided not to go for genetic screening (my mum and her sister both had breast cancer)

I'm in the system anyway, I go every 12 months and can go on self referal within 2 weeks if I feel the need

I asked myself the question -what would I do with the information if I found out that genetically I was more at risk, would I be prepared to have surgery? the answer was no so what was the point of having the screening

I am aware as I can be and a positive result would not have altered the level of screening that I already get

I live in a different health authority to my sister, she has been told no screening until she is 40, I have been seen every year since I turned 30

it really is a very different picture across the country

Nope, still not eligible. Until I wrote that reply, I hadn't realised how much it's upsetting me not knowing. Gah. I think I'm going to have to ask Macmillan how to get privately tested because if I do have the gene, I want a double mastectomy and possibly my ovaries removing as well.

My sister and my mum and I all had an appointment together, it was a bit like a group counselling session where they explained the chances of us having one of the known BRCA genes and the fact there could be more genes not yet discovered, etc. Anyway, my point is that my sister was told in strong terms to really think about whether she wanted to be tested (forgetting the fact we weren't eligible anyway) as she's only 20 and if she DID have the gene, she'd have to live with that knowledge knowing that she wouldn't have mammograms until she hit 35ish.

I think you do whatever feels right for you. It's great that you have a good clinic and to be honest, that's better than testing in my humble opinion. You want the hands-on approach (pardon my pun!). I have a pretty good clinic too, I wasn't due to see my surgical team until August next year but because I have a concern they're seeing me next week. Having that level of support makes all the difference.

UserError thanks so much for contributing to this, it is helping me make up my mind, and I am sorry it is stirring so many (totally understandable) emotions for you.

Sausage - that is precisely why I have never looked into this before - because I wasn't prepared to have the surgery anyway - and I'm still not.

I think my original AIBU should've been AIBU to not want to get screened, because I didn't and then my friend got quite upset / cross about it and that made me feel like I was in the wrong. Now I am pretty much back to how I was feeling a few weeks ago - to just carry on as I am.

There is a hereditary cancer condition in my dad's family - for those who have the gene, cancer is pretty much a guarantee. They tested my dad (who has had cancer twice now) for the gene and they couldn't identify the gene for sure (they know he has the condition, it's just a question of which gene is involved). That of course meant that they couldn't test me or any of the rest of my generation.

That was a few years ago and now I'm relieved I don't know whether I have the gene. I may get cancer, I may not - same for everyone. Yes, the chance is considerably higher for me, but I'm well aware of the symptoms to look out for and I'm not about to take any stupid risks. If I found out I didn't have the gene, it's not like that would mean I would never get cancer ever. If I did find out I have the gene, I'd be carrying on as I am now, but with the knowledge hanging over my head that cancer was more or less a certainty unless I had my bowel, stomach, uterus and ovaries removed. No deal on that one! Plus, I would worry about the implications of a positive test for insurance cover ten/twenty/fifty years down the line. What if we move to the US down the line and a positive test means I couldn't get health insurance or something? We don't know what the rules will be in the future.

I know very little about breast cancer, but it is very common - two relatives may mean a genetic link or it may just be bad luck.

Basically, this is a long way of saying that I think you're probably coming to the right conclusion. Be vigilant, but don't let the worry take over your daily life.

(8 months after I first started screening at 21, my 21 year old cousin from the other side of the family was diagnosed with a cancer none of us saw coming and she died 2.5 years later, while I'm still here and healthy - high risk and all. None of us know what's coming down the line so imo there's not too much point fretting about it beyond taking sensible precautions.)

I wavered, and wavered. My mother was going through the genetic testing process, but died (young) before it was competed. I have been invited to talk to the genetic people and now I am over 35, it's yearly scans. I am not going to the genetic consultation but I will be having my first scan soon.