"Cancer gene" and conceiving a child...don't know what to do

[Cheesybaps]

This is not a real-time issue, but something that DP and I will very likely face within the next couple of years. I've been thinking a lot about it, but haven't come to any conclusion yet. This is more of a wondering... what would you do/ have you done in this situation? Sorry for the length of the post!

DP's mother carries the high risk "cancer gene". We found this out recently after her second cancer diagnosis, and DP is due to be tested for this soon. I believe it's a 50/50 chance that he will have it too.

I'm going on the basis that he DOES have the gene. To be honest, there is a huge history of cancer on both sides of his family and we would be more surprised if he didn't. The question is, what do we do about conceiving a child (if the test comes back positive for the gene)?

DP doesn't yet have any children, I have one from a previous LTR.

The NHS guidelines say our options are:

No intervention (i.e. taking the risk),
Adoption,
Sperm donor/egg,
Testing during pregnancy and (possibly) terminating if the foetus has the gene,
Pre-implantation diagnosis (selecting embryo's and implantation - IVF?)

To be honest (I hope this isn't offensive), I would want to have DP's baby. I don't think adoption or donor sperm would work for us.

I'm also not sure about the pre-natal testing. I don't believe that I would be able to terminate a baby on this basis when it would be very much wanted and loved.

This leaves us with no intervention or pre-implantation diagnosis. Of course, the latter is very stressful physically and emotionally and has no guarantee of even working. I'm also not even sure if I would qualify for it on the NHS, as I already have a child.

On the basis that DP does have the cancer gene, is it very morally wrong to try and conceive a child naturally? I'm swinging back and forth.

Cons:

50/50 chance of passing on this gene.
Higher possibility of child having cancer in later life, having to be tested and monitored as an adult.
Selfish actions on our part - wanting a child regardless of this risk.

Pros:

50/50 chance - the baby might not even have the gene.
We would know in advance so the baby would be able to monitor their health in later life (healthy lifestyle, regular screening, medication etc).
Medical progress in the next few years, possibility of advances in cancer treatments/prevention.

I know this is all "what if" at the moment but will possibly become our reality. We hope to get married and start a family sooner rather than later. Does anyone have any experience of this? Any viewpoints welcome as my head is in a tangle!

Thanks

Anyone at all?

Personally, if I was your DP, I would not get tested. Then I would live my life without knowing, i.e. as if I didn't have 'the gene'. I don't think that particular knowledge would help me, my outlook on life, really. Then I'd have a child if I wanted and take a more unquantifiable/unknown risk.

But that is me. He has to do what he feels he needs to, re testing.

Also I think life is worth living, even with a risk of cancer. There might be much better treatments in the future too.

Is it actually a 50:50 chance? I think (forgive me if I'm wrong) a 25:75 chance because you don't know if DP has the gene.

What does DP think? Because I think his take on whether he wants a genetically 'his' child is important. If he was very happy with donor sperm, that would definitely swing things for me.

You may also need to consider life insurance issues. By having the test you'll have to disclose the result.

Has he had genetic counselling?

I understand what you're going through. I have a 50/50 chance of developing Huntington's disease. However, I already have 2 DC - my dad was only recently diagnosed with HD, so I was unaware of the impact this may have on me and my DC.

I'm due to start genetic counselling as a precursor to predictive testing at the end of the month. Whether I have the testing or not is something I'm entirely unsure about - I've never felt so indecisive in my life, if I'm perfectly honest.

I'm leaning towards not being tested. To me, a positive test result and knowing that I would eventually develop HD is too much like waiting for the axe to fall. If I test positive, my DC carry the same 50/50 chance of developing it. If I get a negative result, the line of the disease in my family will die with my dad (I'm his only child). It's a massive weight to bear.

As a PP said upthread, I'd rather carry on as I am, knowing I could die of anything. Medicine is making great leaps and bounds towards cures these days.

I second the idea of your DP asking to be referred for genetic counselling.

This is a very personal choice. I can only tell you my experience.

I was diagnosed as BRCA2 positive (80% chance of breast cancer plus others) at 25. I had a preventative mastectomy at 29 (pre DP and DCs). I conceived my 2 children naturally in the last 3 years.

Pre-implantation selection meant IVF and more intervention than I wanted if I didn't need it. (Also related to my mutation it increases the risk to put my body through IVF and associated hormones)

IF your DH is tested and IF he tests positive he/you will have access to a genetic counsellor who will discuss the options with you. Although your pro/con summary is pretty much what you'll be presented with, it's good to have a professional to talk to.

I don't know what gene he is being screened for but science and technology has progressed so far. "My" gene was one of the first identified in the late 90s. In the last 15-20 years they have made a much simpler test (not requiring multiple familial positive samples), they have offered and carried out preventative surgeries on women such as myself, they have begun offering pre-implantation screening as well as developing ever more advanced treatments for the disease itself. They have also identified hundreds of other genes.

My DCs (newborn and nearly 2) won't need to worry about testing for another 20-30 yrs (when the cancer risk starts increasing) by which point who knows what screening and treatment options will be available.

I didn't feel "irresponsible" myself. All I am (potentially) passing on is an increased risk of at some point getting a treatable disease. As long as my family is as aware as possible of how to minimise that risk (lifestyle and screening) and aware enough to ensure prompt diagnosis, we are no more at risk than many of the rest of the population. We are just better informed about it than they are.

Also, the geneticist will tell you this. But be careful equating a family history of cancer with a genetic link. The only known gene is on his mother's side so it is still only 50:50 he has inherited it, no more. In my family 3/5 of my siblings inherited it but my aunt (who also has the BRCA gene) passed it on to none of her 4 children (my cousins).

Is that right lweji ? - I thought there was still a moratorium in place regarding disclosure of predictive gene tests.

I'd have a child normally. We all have risks, we're all prone to certain things, at least if your child had the gene you could get them tested and know about it and so could look out for things.

I don't live my life on the basis of something negative could happen and I don't think anyone should

OP I think that your decision should be influenced to some degree by the fact that the gene you are talking about carries increased risk rather than certainty. In the case of the poster with Huntingtons for example though she isn't facing a risk. She's facing the fact that carrying the gene WILL mean contracting the illness. Your position is of course very worrying but even if your dh has the gene it doesn't mean that he or his child will ever suffer from the disease. That being so, I think I would take the decision to live my life and if that includes kids then that's wonderful.

Thank you for the replies, its good to hear some first hand experiences.

To answer some questions:

DP hasn't yet had councelling. He would be open to the idea and will take it, however at the moment he is adamamt that he will not be "wilfully ignorant" (as he puts it), and will 100% be tested.
Perhaps this will change after councelling but I think he will go ahead.

Regarding sperm donation - I had an incredibly bad pregnancy and birth with my DC (PTSD afterwards). It's incredible to me that I'm even considering a baby! However, I love DP so much that having a child with him seems to be worth it. He deserves to have that experience if he can.
To be honest, if I'm not having his baby I won't be having any more and DP agrees. The whole process will be very difficult mentally, I wouldn't go through that for a child which isn't biologically his as we already have my daughter.

I'm so glad that the responses are positive. I expected to be flamed for being irresponsible by considering trying naturally. I've been tying myself in knots worrying that it is an incredibly selfish and morally wrong thing to do.

I thought there was still a moratorium in place regarding disclosure of predictive gene tests

Actually, you are right. www.abi.org.uk/News/News-releases/2011/04/Insurance-Genetics-Moratorium-extended-to-2017
I expect the 2014 revision results will be about to come out.

I would find out more about pre-implantation selection in the first instance. I don't know whether you'd be eligible for NHS funding but it could be worth asking. If it doesn't work then the other options are still available to you.