How to cope with genetic cancer risk

[throwawayashamed]

I’m hoping someone who has been in my situation before can help me. At the end of 202 we found out my husband has an increased genetic risk of cancer - of getting it earlier in life, of it being more serious etc. It’s a fairly serious increased risk.

I don’t know how to cope with this. He seems fairly relaxed (although he is good at hiding his emotions) but I am not doing well at all. I’ve been having very dark thoughts, I’ve thought about leaving him, I’ve thought about our poor children and wished they’d never been born. It’s constant in my brain all the time. I know I’m not being a support to him at this time either, and I don’t want to let him down, but I literally don’t know how I would survive this. I have a lot of medical trauma from early life and I just don’t know how to cope feeling like my husband has a bomb inside him. And I’m so irrationally angry at his parents - I feel like it’s their fault as it’s their genetics but that’s ridiculous. I haven’t said anything to him but he knows how devastated I am. At the moment we just don’t talk about.

Can anyone point me to any resources? Have any of you been in this situation or been in my husband’s? (I’m thinking of BRCA genes etc.) I have to try and make peace with this somehow.

I have an inherited condition that will shorten my lifespan. I’d rather be here than not. I might get run over by a bus before the genes kick in anyway. I’m under a medical team and I follow their advice, although there’s nothing that can really make any difference.

Agree, most of the genetic dispositions to cancer can be managed by changes to lifestyle, potentially preemptive surgery and more frequent monitoring. This can reduce the risk massively. Also, treatment is now much more robust for many types of cancer, so a diagnosis is not the horror it used to be.

I suggest that instead of focusing on the cancer risk, get some help to process your emotions.You are blaming the people who have had the most influence of creating the man you love, for unknowingly passing on a less than ideal gene. That is not healthy thinking.

Speak to your husband's genetic counselor, they should be able to sign post support. What you are feeling is really common place in families with inherited conditions.

I have a ‘variant of uncertain significance.’ I have a family history and have had cancer myself. They are unable to tell me if this makes it more likely to come back, I’ve had free counselling from MacMillan, They offer it to family members too. It has helped me ti work through my thoughts and I’m definitely in a better place than before I had it. Hope you can find some peace. 💐

When I had this sort of genetic testing I was offered genetic counselling. Has your husband been offered any counselling, and/or is it available for you as his partner?

I have a gene (SDHB) that's pretty nasty and confers a high risk of neuroendocrine, kidney, and stomach cancer. I'm 43 with no tumours and have bi-annual whole body MRIs with annual biochemical tests.

As far as I'm concerned, my risk is zero unless I actually develop it. There are no options to remove anything as per BRCA to decrease the risk, so I just have to live my life normally. Scans should catch anything early and detect anything else (one ordinary incidental finding on last Autumn's one that much of the female population will have at some point, so I'm reassured anything sinister will be caught before I'm in the predicament of those who have to fight for treatment).

Yes, this was discovered because of affected family members but, since testing, everyone who has actually developed something has been operated on and doing well with no recurrence which is the point. Neither does having a rogue gene mean you will get something: it means one less soldier is guarding the door (the "two hit" hypothesis) but it's not certain doom.

I ignore people who tell me that lifestyle factors will massively help. Obviously, you should be trying to keep fairly healthy but I'm pretty sure that my eight and 15 year old brothers didn't contribute to developing their tumours. I'm not super strict but don't do anything to excess and keep fairly fit.

There will be an agreed surveillance protocol and you'll be taken seriously with any symptoms (I found myself whizzed into tests when I developed palpitations but it was just low iron!). I wouldn't recommend this as a means to get five star NHS treatment but I'll take it!

We're all going to get something. It's just that we happen to know about our risks and can be pro-active. In that sense, I choose to see it as a positive.

It’s normal to catastrophes in your situation and it not wrong to have the thoughts you have. First of all, it is your husband that has the dodgy genes and potentially your children.
Have you been referred to genetic service? They will be able to advise you, going forward, on the timescale with regard to your children. Depending on the type of genetic mutation will determine their risk. But do remember that there is a strong possibility that they haven’t inherited it. You need to chat to your GP about their risk and where you go from there.

In some respects knowing you have an increased risk means that you are regularly screened and cancers caught in the very early stages have a better outcome on the whole.

Cancer diagnosed out of the blue can floor you. But to be honest, when you know you have a greater risk there is almost a feeling of relief that it’s been found early and with a better prognosis.

We have a couple of potential genetic mutations in our family, as yet they are unknown genes but it makes you more vigilant and so are the medical professionals as a result. Since we don’t know what the mutation is we can’t be tested but we are encouraged to seek medical opinion early.
We lost my younger sister last year, she had breast cancer 22yrs ago and we all assumed it had come back but it turned out to be pancreatic cancer and potentially unrelated. We also have pituitary problems so it appears to be an endocrine issue.
Even though we have genetic issues it doesn’t mean that all of us will end up with cancer. I was diagnosed with breast cancer 3 yrs ago but it was a different type to my sisters. We don’t carry the BRCA mutation but it’s possible we carry another type we are waiting for the results from my late sister’s test done before she died.

I do worry about the next generation but they are now in their 20s and are aware of the family history so know to seek treatment early. But they are also 50% genetically different so may have no risk than normal.

Unlike past generations we are able to find out and make informed decisions. But since mutations can happen spontaneously with being inherited there is little point worrying about it. We have no control over spontaneous mutations.

We found out a few years back that my husband carries a gene that means he is morè likely to get certain cancers. Unfortunately, after having the testing, we found out that both my children also carry this gene.

It has been a tough one to deal with but I never blamed my husband. He didn't know and there was no way of knowing beforehand. Our card has been dealt and we just have to live with it now.

I console myself knowing that all 3 of them have regular scans and blood tests and that if anything pops up we will catch it quickly so hopefully won't be too bad.

I also think, we don't know what is round the corner so let's try and stay in the present and enjoy the moments that we do have.

I completely get how you are feeling, but time will help the news to settle a little better.