I need some advice!! What do I tell my 6 year old????

Hi,

This is the first time I’ve posted but have found this site a great support over the last few months. You are all so inspirational and i’m so glad I found this site. I found out I had the BRCA 1 mutation about 18 months ago. The results came a month after I lost my auntie to BC, she wasnt the first in our family to have lost her battle with BC/ovarian cancer. I have now decided to go down the prevention route by having a double mx and recon. Saw the surgeon today and I feel so positive about it (and slightly anxious!!!)

I don’t know what to tell my 6 year old and he’s already started asking questions about my appointments. I don’t want it to be something I hide from him, which would be difficult anyway, but I don’t know how much or what to tell him. Anyone else had any experience with this?

Pocahontas x

Hi

I wish you all the best and the main thing is I would encourage you to be open and honest. I didn’t have the task of telling young children about my diagnosis but there is a lot of cancer in my family and we are having various investigations. I have a BRCA1 variation (inherited from my Dad) so have experience of having to deal no only with discussing my own diagnosis, prognosis etc. with family memebers but also the genetic ramifications - believe me honesty and transparency works the best.

If I understand you corectly you’re having preventative surgery but haven’t been diagnosed with BC? Breast Cancer Care do have a book (“Mummy’s Lump”) which is written to help women explain breast cancer to young children. I appreciate that’s not exactly what you have to explain but it might be worth a look for hints and tips on the way to say things.

I suppose in due course when he’s a bit older you might have to consider whether to tell your son about the implications for him of the BRCA1 mutation as this is something he has a 50% chance of having inherited so could be at risk of any cancers associated with this mutation and could pass it on to his own offspring. By the time he’s old enough to take in that information it may be that a lot more is known about cancer risks associated with particular gene mutations.

Best of luck with the surgery. I’m still thinking about whether to have a preventative mastectomy on the unaffected side. It’s a tough decision.

My god daughter age 7 wanted to know why Graeat Aunt Marj had dots on her chest - I was able to say well that’s so the man knew where to shine the speial light to make me better. Her response - tell him to put them in the right place next time to make a pictute!!
The point is - just answer the questions honestly and at the correct level for the youngsters to understand. They are concrete thinkers, so concepts like ‘being clear’ ar totally meaningless to them.
Hope this helps you decide what to say…

grumpy

I don’t know if this will help, but many years ago I had to take daughter with me to my cervical smear appointment, as (ex-)OH hadn’t bothered to come home in time, so she had to come with. So much for convenient evening well-woman clinics for working women, ho-hum. She must have been only about four at the time, and was happy to do her colouring behind the curtains, thankfully!

I just said, there are some times you have to go see the doctor because you don’t feel well and s/he can make you better, other times they want to see you and give you treatment although you feel perfectly well, to make sure that you don’t get ill. Even quite young kids understand this because they have things such as thier immunisation injections and the routine check-ups at the dentist and opticians. I also said, it’s a bit like taking the car to the garage before it breaks down, for its routine maintainance services and MOT’s, rather than being towed home in disgrace after hours waiting at the roadside. So I said the doctor has to do this test to make sure I don’t get ill, and then I can be here to look after you.

Does that help at all, you can be very nonspecific about embarrassing body parts like Breast and avoid words with bad implications like Cancer, while being happy because this appointment series will help keep you healthy? Although depending what recon surgery you have, you will actually be a lot less well than you are now, for quite a while, and I’m not sure about explaining that… except if your son has maybe ever seen how they take a car apart at the garage in order to make it run better??

Then maybe be able to say more as he gets older and finds more about your other relatives and family history?

Hi there

I’m actually in the same situation as you! I have a nearly 6yr old and a 2yr old. My aunt died of BC coming up for 3 yrs ago and my mother got diagnosed a year on from her death. We are all BRACA 2.

We didn’t hid his grandmother’s cancer from him, she lives very close to us so we saw her every day and we talked about her appointments to hospital (i.e. Chemo) helping to make her better. I had to explain about why she has no hair but funnily enough when he walked in on her in the bathroom with no top on he didn’t even notice or make comment that she didn’t have boobs anymore - he just said ‘oh gree that is a really bad bruise you have got - it must be so painful’…sweet really.

I’m having my risk reducing double ms in September and I’ve not at the moment made too much about it. 4 months is a long time away for a little man!!! I have told him however just casually that mummy is going to have an operation to get new boobs because mine don’t aren’t very good and I don’t want to get ill like grandma. That seems to be fine with him, simple but does the job for now. The bigger issue I think will be leaving them both to spend 4 days in hospital - I’ve never been away from them. All the planning is great but I think I’ll just keep chatting it through a little nearer the time I don’t want to worry him too much now.

I hope this helps. It’s very personal thing isn’t it - how to handle things with little ones and I’m sure your 6yr old will be fine. I wish you heaps of luck with the surgery.

very best wishes.

M.

Mostly, I’ve been told that a really useful thing to do is to teach the little one to climb, so you don’t need to lift so much. If s/he can even climb up towards you for a carry, you don’t have to stoop down so much. Not lifting at all is really hard, but there are ways to reduce it, if you can be patient and allow them to use (under supervision, obv.) things that you would normally try to prevent. Guess it varies a lot child to child and with what recon you are expecting. And wheeled sit-on or stand-on toys that you can push are much better than Carry, and wheeled toys that they push themselves are much better again! Is 6 co-ordinated enough for a basic scooter?

It might also help if they can experience a weekend away from you before the op, then they learn that mummies get tired too (have they ever actually seen an adult asleep?) and most importantly, mummies come back when they say they will. Hoping it all geos well.

I think the most important thing is to tell him, if he has started to raise questions. As a mum your instinct is most definitely to protect them from everything but sometimes it leaves too much room for imagination to overtake.

My daughter is 15, and she has an anxiety disorder which you have to be aware of. I was really worried telling her… I said sit down I’ve something to speak to you about… Now I would assume she had already picked up on the fact all was not well… So I told her, " I have breast cancer and need a mastectomy" … She said… " oh my god I thought you were going to tell me ziggy ( cat) had died" … And then after a bit… " are you ok?" it was funny at the time.

I am sure you will get plenty questions from a 6 year old.

Best of luck. Eleanor xxx

Sorry it’s taken me so long to reply. Thank you so much for all your comments and advice. I have had two more appointments since posting and my son hasn’t asked me any more questions. I am planning to have a bilateral mastectomy and recon in sept/oct so will probably wait til a bit nearer the time before I have a chat with him. Like Mostly said, 4 months is a long time for a 6 year old. No doubt I will post again as surgery looms. This website has been such a great support. Thank you x