How to tell children about stage 4 cancer diagnosis

[MyPeachHiker]

After a year of treatment for prostate cancer, my lovely DH, aged 51, was told yesterday that it has now spread to his bones (pelvis, spine, ribs, base of skull, femur). He is starting hormone therapy today and chemo in the next couple of weeks. Average life expectancy is 5 years.

We have two boys aged 16 and 13. They know everything that has happened over the past year, surgery, radiotherapy etc, but up until now the prognosis has been positive, as it was always treated as not a big deal by everyone. We were not expecting this. How do we tell our children? Are we completely honest about DHs life expectancy or do we tell them it has spread, he will need more treatment and we don’t know what his prognosis is. To be honest, we don’t really know how long he will have, it will all depend on how he responds to treatment. They are so close to their dad, I’m not sure how to break it to them.

I am so sorry, what a dreadful shock that must be.

I think you have to tell your children, especially as you have told them everything up to now.

Tell them the truth, in a matter of fact way.

I'm so sorry, OP.

I'm a firm believer in being open and honest with children. I would tell them - as sensitively as possible - what you've said on here. The cancer has spread. You don't yet know how he will respond to the treatment. You don't yet know what the prognosis is, but the average life expectancy in this scenario is currently 5 years. You could add that cancer treatment is evolving rapidly and things could change at any time.

And then talk through as a family how you want to manage this news and live with the diagnosis.

You can't really protect your dc from the reality of what's happening. I think they have a right to know what's going on.

I wish all of you the very best.

That's really sad and difficult - I'm so sorry. Unfortunately I have experience of this, although I'm our case we were dealing with a shorter time scale. DH told the children in the first instance that his prognosis was not as good as we hoped, and that his illness would shorten his life. He spoke to them individually so that they could respond individually and ask questions. They were a bit older than yours though. I think this approach meant the news could sink in slowly and helped them to come to terms with it at their own pace.

One of my family members has stage 4 cancer and kids of a similar age. Like your DH she was told her life expectancy is 5 years. That was 7 years ago and she is living a semi normal life - works PT, under constant medical supervision and hormone therapy, in a lot of pain. But also managing to go on holidays and many normal things with the kids (not sports though). Her doctor said that these days average life expectancy changes rapidly, medication is better and improved now, new therapies, plus like your DH she is young. Her kids (similar ages) know she is sick but not the full truth. One of them already has significant mental health and anxiety issues plus battling addiction problems.

It’s up to you of course but unless he is very sick suddenly, I don’t know if I would tell them the full truth.

and sorry for your diagnosis.

Thank you. I know this is exactly what we need to do.

I think I would tell them the truth - the cancer has spread, it is more serious, will require more treatment but might not be curable. I think I would say we don’t know if they ask about life expectancy - unless the hospital gives you a very clear specific x amount of days/weeks/months or his health deteriorates visibly and it is obvious to you all.

What a horrible thing to happen I am very sorry.

So sorry you are going through this.

Unfortunately average life expectancy, particularly when it is that long, hides a huge variance in outcomes - some people will decline really, really fast and others will do well for a period well after the 5 years. Saying '5 years left to live' is misleading as well as depressing.

The good news is that that life expectancy means the cancer is very often treatable, so maybe instead of looking at average life expectancy try to find the statistics on the proportion who respond well and focus on that positive with your dc?

I agree it’s best to be matter of fact and honest, but also that’s so much easier to say than do.
Im so very sorry OP.

I have been in this positon. I think you tell them it’s not curable but it is treatable and that the doctors will keep him as well as they can for as long as they can. I absolutely would not give them a timescale and neither would I say that it’s terminal. The reasons for this are

a) giving a timescale is irrelevant especially for something like prostate cancer. He may respond well to treatment and live for 20 years and he may not. Giving a timescale creates a sense of desperation and clock watching. At this point the disease is treatable and there are a large and increasing number of treatments to extend life and it’s improving all the time

He will be terminal once it’s clear treatment has been exhausted or he can’t take anymore.

I certainly think with prostate cancer it is about living with cancer rather than dying from it. That time may come, but as it’s clearly not around the corner I feel quite strongly not to put a time frame which is fairly arbitrary anyway

I said to my kids - it’s treatable not curable and if at any point that changes we will tell you.

I agree to tell them the truth but not to talk about life expectancy time frames.

Horrible dreadful news. So so sorry OP.
Tell your children everything. Hide nothing from them and don't sugar coat it, They will not forgive you if you lie to them. And make out there is support in place for them. Contact their schools and ask about counselling. Sadly the couch time will come when both are in exam years/starting university.
Let them ask all the questions they want and answer them honestly. Don't given them false hopes about new treatments - they will come to expect miracles which probably won't happen and that is crushing.

This is such a horrible situation for you all.

So sorry to hear this. There is a thread on Mumsnet for people with terminal illnesses that you might find helpful. It’s in the health section under cancer. Wishing you and your family strength.

Thank you, this is a helpful approach to take. I’m sorry you were in this position

Hi, I’m so sorry that you’re in this situation. The Ruth Strauss foundation are fantastic for supporting parents in how to tell children about this, as are Maggie’s I think, so may be worth reaching out to them to help guide you on how best to do it. Wishing you all the best x

@MyPeachHiker
I echo what @moneyadvicepleasehas posted. Treatable but not curable especially if it’s not yet castrate resistant (no longer responding to hormone therapy). There are new treatments and trials coming along all the time if your DH ends up in that position. Also the 5 year average is based on history, new treatments/regimes are developed all the time.
My DH was diagnosed at the start of covid with stage 3, possibly 4 but the one spot on his iliac bone was inconclusive. He had a newer treatment regime and is now in remission and no longer on any treatment.. Since his diagnosis 5.5 years ago newer treatments have emerged eg triplet therapy. There’s always hope because he’s still treatable.
There are lovely people on the Prostatecanceruk and MacMillan prostate cancer forum. They are so kind and supportive and have plenty of personal experience.
Keep posting.

Be transparent with your children. It'll make life easier for you all in the long term.

My dad hid his terminal illness and it all went downhill very quickly. He was admitted to hospital as palliative where I was told he didnt have much time left. I was 13 and it made the whole situation worse.

Im sorry for you and your family but you are in control of some things

I'd be honest with them so they can make plans with DH in case he becomes more ill. Such sad news, I hope the treatment works xx

Yeah, I definitely wouldn't talk about timeframes and you just don't know. I know people who lived with cancer for years, going from one treatment to another, new treatments becoming available, responding better than expected, etc, and massively outliving their initial, gloomy prognosis. @moneyadviceplease 's advice is perfect. You want to be honest, but you also want to keep living and keep things normal and happy for everyone, and that very much includes your DH, who will need his family to keep positive for him.

I'm just here to back up @moneyadviceplease 's post.

Please don't give them a timed prognosis. For starters they're rarely accurate, and also, as a pp pointed out, it starts a stressful countdown in their heads.

I wasn't open enough with my (much older) children. I wish @moneyadviceplease had been there to advise me back then. My late DH was stage 4 and incurable, but the one thing I did right was not give them the probable 'time left' prognosis. His was very much shorter than your DH's, but the palliative chemo was more effective than expected and bought him much more time and quality of life than his consultant predicted.

I hope that's the case with your DH, and I wish you both all the best.

Yes tell them. It's horrible, but you have to tell them. Your darling hubby may go for many years, or less than five. They have a right to know

From personal experience- my dad died when I was 14. He had been ill for a while, had an operation and I was allowed to think he was going to be fine. I was told he had a stomach ulcer, but it was in fact stomach cancer. Everything was kept from me. I got home from school one day and my mum told me he was very ill and he died at 6pm. I was in a state of shock, I had no idea how ill he was. I really think if I'd been prepared, I would have come to terms with it more easily. Because of my experience I'm a believer in telling young people the truth. I don't think I ever really forgave my mum for deceiving me (in my mind that's how it felt).
I'm so sorry your family is going through this. I hope your husband responds well to the treatment.

I’m so sorry OP. I would agree with others, tell them the truth but not the timeframe. These are rarely accurate and much could happen between now and then, including advances in medicine or, unfortunately, something negative that would shorten that lifespan. As children they will start thinking about what age they might be, if they need to do certain things etc within that 5 years, it creates a countdown which you don’t want and which would end up making your husbands life miserable! There are treatments, which is great, and I hope he is with you a lot longer x

Mum and Dad sat me and my long term partner down on our return from holiday to tell us Dad was terminal with prostate cancer.

I didn't handle it very well at all and was very much " yes I guessed that was what you had as i googled your symptoms" with no empathy or anything. I was incredibly close to my Dad all my life and I was absolutely devastated when he passed away. It took me a good three years before I could move on and that was with the help of anti depressants. To be honest when they told me I think i was in shock and just trying to minimise it so by pretending it wasn't happening it stopped me facing the truth and I think my brain reacted in this way to save me from falling apart. Looking back im very ashamed of how I acted but I believe it was a form of self preservation. A similar thing happened with my Mumbut when she died I was very relieved it was over for her as she had Alzeheimers and just lay in bed starving to death.

So don't be surprised if you children react like I did. It will hit them hard but probably best to tell them the truth.

Sorry to hear this @MyPeachHiker. as someone who was the child in this scenario, I’d be honest with them. Kids know more than you think. It’ll be tough to process but I would have done better at the time if I’d known the full situation. Thinking of you all xx