Keeping cancer diagnosis secret from children

[CompromisedConnie]

DP was diagnosed with a life limiting but not life threatening cancer (CLL) 12 months ago. He doesn’t want me to tell the children as you wouldn’t know to look at him. Children are 9 &16. He is young and it’s been awful for us. I support him and we have come through the worst of it. Prognosis is good.

However…

I cannot talk to anyone about this as he doesn’t want children finding out. I support him but there is no one to support me. I’m not being honest with my children or family and it’s really upsetting me. We argue about it which is putting strain on our relationship.

Would I be unreasonable if I told the children and went against his wishes?

This is pretty much the approach we took. We also didn’t tell the kids until we had to.

Please, please, please rethink this approach. It might seem better in the moment but in the long run you are storing up all kinds of hurt and trauma. You still have time to fix this, please tell them so you can support them with this news.

Having a family member with CLL increases one's risk of developing the disease. You need to tell your children for THAT reason alone. Your DH needs to understand this - First-degree relatives (such as children) of CLL patients have double the risk for developing CLL themselves. What's worse, the average age of diagnosis of the second-generation (offspring) is nearly 20 years younger than the parent's age at diagnosis.

Also, I know you said the "prognosis is decades", but do you know the type of genetic mutation your DH has? It can GREATLY affect the overall life expectancy of the CLL patient. Certain mutations have an overall survival of 8 to 10 years, while others have an overall survival of 20+ years.

Additionally, while CLL itself is a "slow" cancer, it CAN have serious complications (like Richter's transformation.) It CAN also "transform" or "convert" into far more severe, serious, and aggressive cancers/diseases, like lymphoblastic lymphoma, hairy cell leukemia, "high grade" T cell lymphomas, acute myeloid leukemia, lung cancer, brain cancer, melanomas of the eye/skin, salivary gland tumors, and Kaposi's sarcoma.

What would you then tell your children if something like that happened?

Your 16-year-old absolutely deserves to know what is going on with their DF - as I guarantee you they'll be able to pick up on the fact that something is wrong with their DF.

When they inevitably find out later on that you and/or your DH kept the diagnosis from them, they WILL feel betrayed and hurt and may not forgive either of you for it. Especially since they THEMSELVES are at a greatly increased risk of eventually developing CLL.

You still have time to fix this, please tell them so you can support them with this news.

This is where we differ. Right now they don't need support. I got my diagnosis over a year ago. My two kids have had a normal teenage life in that time. They are not worried about me. They are not sad. They are not scared for the future. I will not take that away from them until I have to.

That was really helpful, thank you. We are only just a year in and first wave of treatments but all going well. Best of luck to you, your husband and kids xx

Don't go against his wishes or they're going to have a lot more to deal with than an ill dad.

If he becomes more ill, tell them then. There's never any rush for bad news.

Oh @Meteorite87 that's so sad. You were so young. I had a similar experience but I was older in late 20s. I think lots of people knew it was terminal but I didn't until the last few weeks, I genuinely thought she was going through a bad patch as she has previously. I was truly mortified at how naive and stupid I must have looked. I remember my uncles wife saying some obscure stuff about valuing time with her etc and I realise she was trying to tell me but had been warned not to. It made me angry for years. I realise now that her not telling me was not about me but about her having an innocent relationship with me, she needed someone (me and sibling) to not see her as sick and to talk about normal stuff. It took a while to forgive to be honest but as a Mum myself now I understand more.

OP I think you need to put pressure on DH to tell 16 yr old. I think DH is being very unreasonable here and not respecting his DC. I'm sorry. It's such a tricky situation.

Thank you for all the comments, well the kind ones! Considering what a shit position I am in, some of the more aggressive posts have been a little upsetting.

I am going to speak to his CNS.

I was 22 when my dad first diagnosed with cancer and my brother only 17.

The worst thing my parents did was not tell my brother and to coddle him about it.

We are now sadly in the end stages. It made the shock all the more and made him so sad at how he had wasted time as he didn’t know.

I appreciate your youngest is much younger but still.

All the best wishes for you and your family.

I appreciate people‘s various takes are coming from their own experiences.
Even my own CLL adjacent experience differs from yours as even 1 year into diagnosis my kids were very much younger than yours and also - even though my husband was really unwell at diagnosis and constantly ill for the first 2 or 3 years - he hasn’t yet needed treatment.
There is no perfect solution - what’s right is what feels right to the two of you. Not any of us here on MN. I wouldn’t go against his wishes and tell them - I’m certain he will come round to this with some professional pointers and also when he feels able to manage that. My husband felt like a burden and just didn’t want the constant reminder from everyone else. He didn’t want to be defined by it and he was adamant he was going to buck the statistics. (It helps he has an excellent consultant with the right proactive and positive framing which is exactly what he needed.)
As your DH is in treatment, this must all still very new and he is likely feeling utterly physically wrecked and putting one foot in front of the other. Even without treatment, the hardest thing to navigate was how permanently exhausted my husband was and how he was never ever fully well. Always catching a virus and when caught it would take about six weeks to fight it off before catching something else on the back of that. If your husband is like that it’s gruelling to never be quite well. I totally understand how at this moment he might just not be able to face telling your kids/ other people.
I think your approach to discuss whether to tell your kids with his team - and him - is a solid one. I’d be surprised if it didn’t bring him round to managing that conversation - eventually.

DS was 16 when I was diagnosed with cancer. We waited until I had full diagnosis before telling him. He would have been devastated if we hadn’t been honest. My treatment was successful but as with any cancer diagnosis there is always a chance it will reappear.

Im so glad we did because 6 months later my DS had a stroke and DS was with him when it happened. He coped incredibly.

We lost my DSis to cancer last year when DS was 20. Unfortunately, although DS had coped admirably with the last 4 yrs including losing his grandfather to a catastrophic stroke, he has had a bit of a delayed reaction this year. I think it would be difficult for anyone, I lost both parents when I was young and have developed a pretty tough resilience, but it has been much earlier and over a very short time for DS. He had been reluctant to acknowledge that he’s had it tough, he’s very stoic, but he has struggled recently at uni. He is very resistant to using it as an “excuse” but has finally accepted that it is ok to be affected. He has always avoided seeking sympathy, something that many of his generation have no problem with, but I think most of his friends would be astonished by what he’s gone through and it would explain his reaction to other people’s attention seeking. His close friends know the score and are very supportive. They have been great over the last few months as he has spiralled down and particularly his house mates who have watched him like hawks when he was at his lowest.

I think if we had kept things from him he would have been very angry. The trust we have, as a result means that he is very comfortable opening up when he’s low. He’s learned that it’s ok to ask for emotional support and also that it’s important to offer support when friends are having a tough time because he has greater understanding of what they are going through. Children are a lot tougher than you think.

There is a lot of support you can access as a cancer patient to help you cope with telling your children. In the long run it’s far better that they know and have support now than have to process not only losing a parent but also realising that they may have been lied to for years. You can try and keep them in the dark but it only takes a throw away comment, or an overheard conversation or stumbling across a hospital letter for them to discover the truth and then have to process it all without all the facts.

Well said @Greggsit!!

My parents played this game. The result is two adult DC who don’t trust the DP, have a pact with each
other to share anything and everything we hear from DP and both have permanent anxiety around health in the family (because we can’t trust we’ve been told). Both of us find going on holiday particularly hard due to the concern something could happen whilst we’re away and we wouldn’t know for fear oc “not wanting to spoil your holiday” etc etc.

Both of us overheard things that we “knew” meant things were more serious and all it meant was an inability to discuss it or be reassured, so you had 2 teens processing things entirely alone based on partial, eavesdropped information and Google.

I have a deep and ingrained knowledge that my DP are not trustworthy and it changes your relationship forever. For DB is causes conflict as it’s impacted his behaviour around DP and they claim to not understand why… essentially we feel it’s them and us, rather than a family unit.

Why would that happen? My children are adults now, and have no idea about my condition (I don't have cancer, FWIW), and they have no need to know. How would it help them? Nobody has lied to them, or betrayed their trust - suggesting that is the case is not only unkind, but entirely untrue. When/if things take a turn for the worse I will tell them, but it is my right not to do so until then, just as it is their right to keep their own personal matters to themselves without me claiming a 'right to know'. They don't live at home, or even in their home town now, and in any case I am outwardly healthy enough, so there is no impact on them at all, and I hope there won't be for a long time, during which I want them to make their own decisions based on what's right for them, not because of 'poor old mum'.

I (and my husband) are 100% there for them, and will be until it is no longer possible to be. Spoiling that time with thoughts of illness would, IMO, be selfish and pointless. You may disagree of course, but please don't suggest that my children are fucked up with trust issues - they aren't.

I completely understand where you are coming from. The run up to telling my DC (8 & 12) that my husband had cancer was just unimaginable.. we felt as though we were going to end their childhoods with those words.
In reality, it was horrible, but not nearly as awful as it was in my imagination, and their childhoods didn’t end. We told them, we all cried together and cuddled and answered their questions. We made it clear that there was nothing shameful about the situation & they should ask us anything. It is a cliche, but they were far more resilient than I could have believed.
The only thing I would change would to have been blunter with what we said, because despite telling them that people do die from his illness, it was still a shock for them when 3 months later I had to tell them that he was going to die. I had been honest about everything, but I should have been more explicit - not less. I am so pleased that, at this point at least, they tell me everything and trust me to have their backs.
I completely understand your instinct to shelter them whilst you can, but please know that there are positives that can come from them knowing that they are trusted with information, and that they can trust their family. Cancer is overwhelming for the person who is ill to deal with, but it is also a lot to navigate as one who has to keep on living - and I think you need to help those you love prepare.
i really hope this message doesn’t come across as being mean. My heart breaks for you having to go through this, and I hope your condition does not ever deteriorate.. I just wanted to say that telling your children can really help them x

They probably already know and are too scared to say anything to you. When I told my five teenagers that I needed a big surgery due to a rare cancer four years ago, I waited until after Christmas so as not to spoil it for them, but I wish i had told them straight away. In those short weeks, maybe a month despite being really careful or so I thought one of them had heard something I said on the phone and had googled the hell out of it and come up with a much worse scenario. I had no idea. Anyway despite the huge surgery and five weeks in hospital my cancer was stage 1 and I'm now cancer free. I'm so pleased I was honest with them, we all have a close relationship and they know that I'm going to be fine now.

I love all the armchair advice from people who have never been in your situation and who know exactly how they would behave if they were.

I completely understand why you have made the decision you’ve made. Nobody knows how they would react until they have walked in your shoes

in fact my dad was diagnosed with cancer soon after I lost my husband and they took the decision not to tell me until well after the event. I was 45. Fortunately he had an operation and didn’t need further treatment but I’m forever grateful they didn’t give me one more thing to worry about when I had so much on my plate.

@moneyadviceplease

“I love all the armchair advice from people who have never been in your situation and who know exactly how they would behave if they were”.

A bit ironic as you’ve done exactly what you are complaining others have done, and many people posting have been in exactly op’s position, me included.

My dad has kept illness secret from us in the past and though as an adult I can kind of see where he was coming from, I completely disagree and wouldn’t put my children through that. They’ll find out eventually.

edit - typo

And so have I. My husband died of cancer when my children were still at school. I’ve been in exactly the OP’s position of having to make a very balanced decision around what and when to tell the children balanced by my husbands desire for privacy and wish to keep it private as long as possible

I'm sorry you are going through this, but I would say from experience, as a child of someone who had cancer for a long time, please do not keep this from your children, as it will be hugely damaging and cause resentment they may never get over.

I lost my mum to cancer and she downplayed for 5 years how bad things really were/ hid things from myself and other family members for years and only told us the bare minimum. I only found out from my own research into the type of cancer and pressing when I got vague answers, that it was terminal. Or gained information second hand for other "adult" family members, even though I was 29 when my mum was diagnosed, or if my dad let slip and mentioned something he had been told not to. We (mum and I) fell out pretty badly about a year before she died after I finally snapped and told her to stop treating me like a child and in all honesty, our relationship was never the same after that. My dad has alluded things would have been very different if it had been up to him.

I think that's unlikely though and surely the other person would only be at the oncology clinic themselves if they also have cancer? They may not even want to out themself.

My mil had cll, for 20 plus years, and it’s often said that people die of other unrelated issues, she died at 85, nothing to do with cll, just be mindful, ask the cll help line for help xx

My husband has been going to a Cancer Centre for 10 years. People often have a distance to travel to attend these places and in our instance he attends a private clinic miles and miles away from where we live. Never seen anyone we know there, not once.

Don’t break your word, but your DH is wrong not to - age appropriately - let your DC know. They have a right to know and process it.

I know someone whose DF died when she was twelve; she knew he was ill but they kept it from her that he was dying. It was unexpected for her, and the trauma destroyed her mental health as an adult. Talk to your DH. And ring Samaritans or the MacMillan support line for yourself.