Tests show that I'm 75% to get cancer,

[littlewater]

So I've not long found out that I'm 75% likely to get cancer. I'm 26 and have found out that I'm 75% likely to get ovianian cancer and 50% for bowel.

I'm not really sure what I should do now, is there anywhere I could go to find about inherited cancer?? Should I stop ttc??

I'm just scarred, can someone tell me what I need to do???

Lw

How have you found this out? Specific gene tests ? - and what timescale - eg in the next five years, ten years, ever? Anyone offering testing of this kind should be offering suitable counselling and support to go with it.

For high risk of ovarian cancer you can get regular blood tests for the 'tumour marker' and ultrasound screening. Bowel cancer can also be screened for on a regular basis - neither can prevent it but would aim to catch it early.

How did you find out? Have you been able to speak to a geneticist about it?

surely whomever is testing you has referred you to speak to someone about it. I can;t imagine they'd just wave you off with a "cheerio see you when you have cancer"?!

Did you not get counselling before you were tested ? I thought is was a compulsory part of the pretest procedure

My mum rang about an hour ago, my auntie has had genetic testing done after her son (25) has got terminal bowel cancer.

I didn't ask about timescale, but all my female relatives haven't seen the other side of 65.

Lw

I know this is morbid, do you think I could get all my pension payments back??

Lw

You need to go to your GP and talk to them about it - tests your aunt has had don't mean anything about your risk.

There are special clinics who deal with these things and will talk you through it all

Are you basing this on your aunties test or have you had genetic testing? You should have had genetic counseling before taking these tests and whoever gave you the results should have talked through your options eg full hysterectomy an regular tests. You need to see someone about this and talk it through. My GP referred me when I needed genetic testing. You may not have the gene your auntie has. If your mum has it then you have a 50/50 chance of inheriting it.

Hang on a minute, you haven't seen anything specific to you. Go see your gp to discuss the issue

Hi, so have you actually had a genetic test? I have the faulty Brca1 gene giving me an 80% chance of breast cancer and 40% chance of ovarian cancer. The risk is greatest between the ages of 30-60 I had to have counselling then a blood test and have had further counselling since. I had a 50% chance of inheriting this, my sister has not got it. You need to ask what ages your risk refers to so you can decide what course if action to take. It is a very scary time I hope you have lots of friends around to help you through this.
Hugs

Thanks dibbler, it's just a huge shock.
Do you think I could phone the GP and say it is urgent??

Lw

Until you have testing done you dont know what your risk is.

Teddy,
No i have not had the test, but lots of people who know me say you ought to get tested.
I'm just scarred, I'm not 30 yet.

Lw

Has your mum had the testing done? (Assuming it's your mums sister). My dad, his sister and brother carry a gene but his other sister doesnt so her children didnt need testing. I don't think there would be an urgency to your tests unless you where having symptoms. Make an appointment as soon as you can and talk it through. When I needed testing it moved along pretty quick but there's certain things they need to do first like talk through what will happen once you have the results.

Your GP probably wont be able to do much more than refer you to a geneticist. In some areas genetics departments will also see relatives of existing patients - so if your aunt mentions you and it is appropriate for you to be tested then they might arrange that for you.

Oh poor you. I know exactly how you feel. I am just 31 and only found out about my dodgy gene in the past few months. It is all incredibly scary my mum found hers from a cousin telling her. She got tested and then so did I and my sis too. You will see a councillor if you choose to be tested. Then you will find out about a month or so later. I was quite shocked I didn't really think I would have it. I am trying to take it as knowledge is power and that I have the chance to do something to stop the seemingly inevitable cancer happening. There are lots of options and you can take time to choose what to do. I totally understand your fear x

Yes that's true. I was first of my siblings to get tested. GP referred me to geneticist and when I got my results they said my siblings could go straight to them for testing. Ask your aunt for the information. That would speed up your testing.

Its not really urgent - its going to take you months to get any answers. In the meantime, what the Drs will want to know who in your family (blood relatives) has had what cancer and what age they were diagnosed at, so you'd need to ask people about those.

Libb,
No my mum has not been tested. I'll phone my GP tomorrow.

To everyone else,
Thank you for stopping me from freaking out.

Lw

Well it sounds like you need to slow right down. Why do you think YOU have these % risk if no one has tested you? I would speak to your gp and go from there.

But can we just back up 30 seconds and go with my initial reaction which is: you get genetic testing for cancer now?? I honestly did not know this happened. My dad had leukemia, my mum had breast cancer (both alive) and my aunt (mum´s sister) died of colon cancer. I am getting a bit worried about the propensity for cancer in my immediate family, can i ask the gp about this?? (sorry for hijack)

Roundthehouses leukemia is not genetic. Some cancers or other diseases are caused by faulty genes. Some just bad luck, some lifestyle. Those who have a history of a disease that is only genetic (in our family it's cystic fibrosis) can get testing. Others may get testing if a cancer caused by faulty genes is likely eg if your mother, aunt, gran, great gran all had breast cancer/ovarian cancer then it's likely these could have been caused by a faulty gene. In your case it may just be unfortunate that 3 close family members have had cancer. Find out the history beyond your parents if you can then discuss it with your GP.

Thing is the population risk of getting cancer in the UK is more than 1 in 3, so in any family there is likely to be some history.

Hello
Just had to link to this
www.claireandthegenie.com/

Thing is the population risk of getting cancer in the UK is more than 1 in 3, so in any family there is likely to be some history.

Exactly! With those odds it means that we all have a 33% chance of getting cancer.

Try not to let it bother you too much. No one knows how long they have and any one of us could get hit by a bus tomorrow.

I think discussing this with your GP (provided s/he is a good listener) is a good first step. Perhaps best to book a double appointment so you've got a bit more time to talk.

I think that you need to think very carefully about what, if any, testing you want done. No test will be able to tell you for definite whether you will or will not get a certain form of cancer, but only your risk; you could be presented, essentially, with varying levels of uncertainty. And therefore, before undergoing any testing, you'd need to establish how you would live with each possible level of uncertainty.

It might also be worth exploring the role of lifestyle and other factors in the cancers suffered in your family. Few cancers are purely genetic, and there may be something you could do to lower your own risk - for example, stopping drinking or avoiding certain foods.

Do you have kids, and if so, do you have any daughters? If so, and particularly if you have daughters, any genetic information you uncover will have an impact on them, and you need to consider how you'd approach that information with them.

You raise the issue of finances. Certainly, it's a legitimite consideration - any genetic information you discover may have an adverse effect on health or life insurance, for example - and worth considering. But unless you're in imminent financial need, it's probably an issue that can wait.

I suppose what I'm trying to say is, please try to calm down and don't allow your panic to propel you into any hasty decisions. But given that you're aware that having a relative your age with terminal cancer means that you do need to consider your risk, you're wise to be thinking it all through now.

Last year, I was faced with the possibility of having an almost-inevitably-terminal, if very rare, disease alongside the possibility of a complicated array of other diseases with genetic components... so a similar situation perhaps not in detail but in urgency and complexity. And whenever I posted about it on MN I got some wonderful support from some very knowledgeable and experienced people. So please, keep this thread going and keep sharing with us your thoughts and feelings.

And apologies for the essay!