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Thyroid cancer - what to tell DD

17 replies

runawaysimba · 29/11/2017 02:24

I've just found out today that I have thyroid cancer - I will be having a total thyroidectomy on the 12th of December. The results of the pathology after the surgery will determine whether I will then need to have radioactive iodine treatment.

What I'm stuck on is how much to tell DD, who is 6. I had an ovarian cystectomy earlier in the year, and she was great - didn't stress about me being in hospital and was careful while I was recovering at home.

So part of me thinks I should just tell her I need another surgery like that, but on my throat this time, and another part thinks I should tell her it's cancer, but that the surgery (and maybe RIT) will cure me, so it's okay which is what my surgeon has said).

I don't know! Cancer will scare her, but on the other hand I would hate her to inadvertently find out from someone else if I didn't tell her, or in five years' time say, remember that surgery? I actually had cancer.

I should tell her, shouldn't I? What should I say?

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mumof06darlings · 29/11/2017 02:43

I'm sorry you are going through this. I think I would go with the "this is just another surgery" kinda story. She can get the full story when she is older. I'm sure if she did overhear a conversation and cancer was mentioned, it wouldn't fully register.

Hope you feel better soon 🌸💐

runawaysimba · 29/11/2017 02:49

Thank you mumof06darlings, I think you're probably right. DP agrees with you! I'm still feeling all over the place - you should have seen me trying to make myself a cup of tea earlier! I won't say anything for a few days, anyway, so will take some time to think. Thank you Flowers

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User556 · 29/11/2017 03:09

Been through cancer when my DC was young but am still going through some of it now DC is now 7
I think you need to be honest but limit your vocabulary to what your child will understand
Be led by her in terms of reaction.
You're right in that you don't want her to hear about it from somewhere else but also you don't want her to feel that there is something wrong and no one is telling her anything
If you have anything for her to relate it to do so.
As I'm not currently going through treatment but seeing the drs quite often I say that it's a bit like going to the dentist. I go there so they can check I'm ok because I have been ill before but if something comes up they will know and they can do something about it to try and help me although I have not used the cancer word yet although I feel I probably will do soon.

Macmillan are good if you contact them

www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children

I would be open and tell her she is free to ask questions to you anytime or your partner or anyone that she confides in like a teacher (obviously give them a heads up).

You can PM me if you like.

User556 · 29/11/2017 03:12

If you do say cancer personally to my DCit won't mean a lot but my fear is he'll hear from someone that so and so passed away from it so you need to make it so that the drs are helping you and lots of the time people do get better.
Flowers

runawaysimba · 29/11/2017 03:57

Thank you User556, and sorry you're in this shitty boat.
I'm not in the UK to contact MacMillan, but that link was really helpful, thank you.
DD has asked me about cancer in the past, randomly, and I've told her that it can be serious but that it depends on what type and where it is in the body. I don't know if she'll remember that.
I'll talk to her in a couple of days when I've processed it all a bit more, I think.

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hevonbu · 29/11/2017 04:49

I can share my view as I remember it. My mum was very ill when I was little and nearly died several times (from heart attack etc.) but even though she was so ill, it usually didn't bother me when I was little - it was just "steady state" and I instead found it great that she was home a lot (!) and I didn't realise how ill she really was. As a child the focus lies near and one doesn't have the same sense of time so what happens a month or two from now is far away. What was scary though was visits to the hospital, with dad, and in those days children weren't allowed so I (aged five) was left crying in a hallway and it was quite awful and I still remember it 48 years later. I think you, or your DH, should tell your daughter as a matter of fact, what is going to happen - no or few surprises - but not talk so much about the long-term perspective /beyond a month or two/ as it doesn't make any sense when one is young.

hevonbu · 29/11/2017 04:52

That said I hope everything goes well for you. My granny (on mum's side) had radioactive iodine treatment (back in the seventies) and lived on until she was over eighty years old. She was very active, travelling around to different countries. The only visible trait was that she packed a pillbox of Levothyroxine.

Sofabitch · 29/11/2017 05:30

I had thyroid cancer. And it really isn't like other cancers (or at least my type wasn't) a total thyroidectomy ... 6 weeks of feeling crappy whilst they made sure my thyroid was all gone and then 1 week of no contact with my children following the radioactive iodiene treatment.

Then a few months of super low energy whilst they found a reasonable level of levothyroxine.

I had about 4 weeks off work in total.

Sofabitch · 29/11/2017 05:36

Sorry meant to add I didn't tell my children it was cancer. Seemed crazy to worry them needlessly.

3/4 sub types of thyroid cancers have basically 95% plus survival rates.

Although one type can be bad. Anaplastic tyroid cancer.

I think I'd wait until after surgery and yoy know the type/stage and can be better informed of the path ahead.

runawaysimba · 29/11/2017 07:07

Thanks hevon and sofa. Hevon it's useful to hear from a child's point of view, thank you. And sofa, that's what i've been wondering. From DD's point of view, this will be no different to my cystectomy earlier in the year.
They have already ruled out anaplsastic cancer, based on my biopsy, so the surgeon said my experience should be like yours - thyroidectomy, possibly RIT, and done bar sorting out the thyroid medication.
I am glad you are well now!

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EthelOnTheTown · 29/11/2017 09:37

I had extensive surgery for cancer when youngest dc was 5. She dealt with it far better than the teens as obviously young dc don't grasp the implications. We used very simple language, didn't force her to talk about feelings just made sure she had lots of distraction but opportunity to ask questions too.
Good luck, I know its terrifying and seeing our dc affected is the most heartbreaking part of it. They are very resilient though Flowers.

runawaysimba · 30/11/2017 01:39

Thanks Ethel - hope you are well now. It's very encouraging to hear about kids' resilience. Flowers

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debska · 30/11/2017 11:12

Have had the same cancer and youngest was 6. Because the treatment was straightforward and she was so young , I didn't tell her it was cancer. Will tell her when she is older. There are some really great Facebook groups for uk people which you could join . I know you aren't uk based but they are quite upbeat and positive and full of info. . Pm me if you want to chat x

runawaysimba · 02/12/2017 04:53

Thanks Debska I’ve found a couple of Kiwi Facebook groups I’m just lurking on at the moment - helps to hear from others like you who are out the other side!
In the end I told DD that the lump in my neck is bad for me, so I’m having surgery to remove it. She was absolutely fine, of course!

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runawaysimba · 12/12/2017 08:03

Just wanted to say I had my surgery today and it went really well. Currently on the ward with a sore throat but otherwise feeling fine.
DD was lovely and gentle with me and left her second favourite teddy to keep me company.
Thank you all for the advice - we’ve isolated DD fairly well from the worry I think!

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debska · 12/12/2017 08:32

Great news. Are you on one of the Facebook groups ? You may want ongoing support and there is always someone there to help

debska · 12/12/2017 08:33

Sorry. Just reread what you said before about Facebook.

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