Would you lie about genetics test result?

[cinemasnoozer]

I'm really unsure what to do. I've tested positive for a cancer gene (think Angelina Jolie type). Just to be clear this was due to predictive screening as my family have the gene. I do not and have not had cancer.

Do I a. Tell my parents. They'll feel so guilty and worried about me. They'll also encourage me strongly to take the most drastic options going forward. Or b. Lie and say i got the all clear. They'll be so relieved and i get the freedom to take the decisions i want going forward.

I think b. Is an option. I'd realistically only have to 'confess' if i did get cancer and need major surgery. I could manage routine screening tests without them knowing. Obviously i have to tell any future children when they are an adult.

Wwyd?

Don’t lie

Unless your parents are very elderly indeed and you anticipate them dying in the near future I wouldn't lie...

As for options you can firmly say "not prepared to discuss it"

I would so totally lie. No hesitation.
Even if you have the genes, lifestyle choices can often reduce the risks considerably. I'd work on those.

I wouldn't lie, but I'd tell them that having the test done was to enable you to make an informed decision, and that you'll be making that decision yourself. Best of luck, OP.

I'm a BRCA carrier, it is openly discussed in my family as everyone that tests positive results in implications for generations to come. I've also had four preventive surgeries so far so it would be too hard to hide. I would tell them, but be prepared to reassure with the info that once you've had a mastectomy your risk will be reduced to less than that of the general populations. I wouldn't talk about it until you have your head around what you plan to do moving forward though. Hope you are ok- it's a shock! But I'm fine now and have a cracking pair of fake boobs!

If you are really struggling to think about how to communicate around this, why not discuss it with the psychologist attached to your genetics clinic, who will be able to help you think this through in a much more helpful way.

Also, the best treatment for genetic cancer risks often involve major prophylactic surgery, not only treatment. You won't be able to hide that, and may well need their support around it if you decide to have it.

FWIW I would never lie about this but I would put a lot of thought into how to discuss it with others.

Sorry just reread and realise that a mastectomy might not be for you- despite this I would still tell them, as you will have regular appointments for screening etc.

There's no need to tell them. Take your time and make your decisions without worrying about their reactions x

So your parents know you had the test? In an ideal scenario they wouldn’t know that you’d decided to take the test meaning you could have kept the result to yourself. But if they know you have had the test I think you need to be honest. I just think it will come up in the future and it’s a difficult lie to keep over time, without having to lie more and more. Sorry you are in this horrible situation.

I'd go for B

The benefit of knowing is that you can do something about it if you wish or it may make you more wary of symptoms and get them investigated quicker. Usually it is better to think about people’s feelings about it all before getting the test (that way you can decide between yourselves before the test who would like to know the result and who would not). But speaking to someone/counsellor at the genetics clinic about this may be helpful.

If you decide you don't want to tel them I think it would be better to say you didn't get the test/results rather than say you got the all clear. You could say you decided not to go ahead with testing or even you decided on the result day not to find out and might do so at a later date. That keeps your options open.

You have every right not to tell them; no reason to hurt them more. But you can choose not to pass this onto future generations. If you want children so many need adopting

Does the result affect anyone else? That may determine whether you have to say something or not. My genetic testing (I was being tested having already been diagnosed with a condition) was largely about whether siblings and children were likely to be affected.

I think a lie of that nature could lead to untold damage in your relationships with family members. Lying by omission - perhaps. Actively telling your parents you're negative - I think this is likely to have very negative long term repercussions, if you have an ongoing relationship with them/see them regularly. If you're not at all close/don't see them, then it might be different (although this might increase the distance further). I agree with the above suggestion of discussing this with the team psychologist/genetic counsellor. Good luck.

I have brca as do plenty in my family so it's very open here. What reason did you have the testing done and were they able to do it without samples from family members? As surely they'd have some inklings based on the above, or is it just the result you want to keep quiet?

You mention future children, dont forget about pgd ivf if you want this to stop with you. I'd get on a waiting list now if so

Appreciate it's a lot to get your head around so for now do whatever you need to do

I have lied by omission and I will keep it like this.

Unless you have a genetic mutation that puts you at any risks, you have no idea what that means. First of all, there is this constant mistake about I have the Angelina Jolie gene or I am a BRCA1 carrier. That's rubbish, we all have these genes, they are the good ones, they belong to a group of 65 tumour suppressor genes. It is when we have a mutation or deletion of one of these, that we have a higher risk of cancer. Each of these 65 genes is specific to some body parts or system and they also work together. They protect us against specific cancers. However a mutation doesn't mean you will get cancer, only that your risk is greater, sometimes a lot greater.

Nobody can tell the OP if she should or should not lie. I didn't tell my parents I have the NF1 mutation which puts me at a lifetime risk of cancer of 60%, with a negative prognosis in case of cancer and a general 10-15 years life expectancy reduction. What I have done is drastically investigate the cancer prevention measures for those genetically induced cancers and adopted a plant based anti cancer diet with a focus on low calories, low proteins, high micronutrients , without malnutrition diet.

For some mutations there is the option of preventative surgery, like breast and ovaries. For other mutations, this is not an option. IN my case, in addition to the cancers, we also have benign, yet disfiguring , skin tumours, called neurofibromas.

What benefits would come from telling my parents? and for that poster who suggesting adopting, we are in 2019 and you can have pre-implantation diagnosis, called preimplantation genetic diagnosis (PGD). You can have children safely.

What to do with the information on your diagnosis? First educate yourself to the world of medical publishing, because between research and change in protocols, there is a 10 year gap. Read, not blogs, but medical papers, medical books, attend conferences and symposiums, see where the research is going and what the latest recommendations are in terms of screenings even if not covered by NHS, and change your lifestyle.

There is quite a lot of research on the BRCA 1 lifestyle intervention because for some reasons, 15% of the women with the mutation don't get cancer and the why can help other cancer inducing genetic syndromes.
So depending on which mutated gene you have, there are options for you to reduce your % risk. You have the knowledge, don't sit , use it to your benefit,

Thanks for all the info guys; lots of really useful info there. I think for now (as my name suggests!) I will snooze on the dilemma. I don't have masses of time as my family know I've been tested but i do have a few more days.

I mostly want this to be an insignificant thing in my life. Yes i can read up about lifestyle factors and do my best to live by them, and have regular screening as is recommended by my geneticist. Beyond that i dont really want to think or talk about it much.

I told my parents that I was prepared to disclose my results but it's far easier for me as I am very low contact borderline estranged from them...

it's a shitty situation all around.