33 year old, breastfeeding mum, stage 2 Invasive ductal C right breast ER/PR-HER+

I’m looking for a bit of advice for when I have surgery. I was diagnosed at the end of feb with grade 2 invasive ductal ER/PR- HER2+ and node positive but thankfully imaging of rest of the body looks clear. I have started chemo and targeted therapy, third one is due this week.

I have a little boy who is three and a half who I had been breastfeeding until the day I found out. That night we had our last breastfeed and he managed very well with the quick change. My worry is that when hes sitting and calm etc he holds my breast/nipple. I have been advised that as my cancer is multifocal over a certain size then I will require a mastectomy. How do I explain to my little person that my breast has been removed? I’m so worried about how to approach this and what effect this will have on him with regards to him having medical care/ body image/surgery etc as he grows.

Hes coped very well so far (I still worry though!!). He knows mummy has a bad boobie and is having a special but silly medicine that makes her boobie better but makes her hair fall out too.

Any advice is welcome on how I explain a mastectomy to a boob loving toddler.

xxxx

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Hi Ames1,

I’ve no experience of explaining to little ones so I hope some ladies come on soon to give you advice based on their experiences. I’m a teacher though and know picture books can be great- if there is anything like that out there?

I also wanted to say I had a very similar diagnosis to you- Her 2 grade 3 at aged 29. I was also initially told I would need a mastectomy. However, after the chemo had done its work I ended up only needing a lumpectomy. Just something to be aware of before you think about explaining to your little one.

Best wishes,

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A quick Google there shows there are a few books “is it still okay to have cuddles” looks to be the most recent one. Might be worth a look.

:blush:

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@ames1 this is really tough for you. I have a 14 and 12 year old and telling them was the hardest thing ever as they really do understand what it actually means and can google everything if they want!

No real advice but with a 3 year old, it sounds like you’re doing it well so far! Poorly boob, treatment etc… that’s a great start. As for not having a boob anymore… be honest, again. He can focus on the other one for now and maybe in the future you’ll have a new and improved boob for him!

Kids grow, he’ll adapt no doubt but I know it’s really hard to let go of the special cuddle times you have. Perhaps create something new … a new type of ‘mummy hug’ that distracts him from what he’s normally used to.

You can do it… I’m positive it will go well for you and your son xx

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Thank you so much. Sometimes it’s just nice to have that reassurance from those who have been through similar situations. The worst part of it all is how it affects your loved ones the minute you break the news! Lots of love to you xx

That’s really reassuring re: lumpectomy instead of mastectomy. I don’t know whether after all of this I would just ask them to remove the breast. I’ll go with the best advice and my breast consultant is lovely. Just terrified of reoccurrence! Will have a look for picture books that’s a fab idea x

Totally understand. Don’t know if you’ve been offered genetic testing. I was just due to my age as I know that could alter what surgery you go with. Mine all came back negative.

I’m two years out now from diagnosis so any queries feel free to give me a shout- I knew very few people who were HER 2 when I was diagnosed so good to have someone to bounce off.

Hope you find some books! X

For what it’s worth I think you’re doing amazingly well in what you’ve told him so far and how you dealt with it. I have a 6 year old and a an 11 year old and similar diagnosis - grade 3, Multifocal, HER2+. The difference was that I didn’t know mine was HER2 until after my mastectomy so now I’m starting chemo and doing everything in reverse. I chose not to reconstruct - at 45 I figured it had done it’s primary job of feeding my babies and I just wanted it done with less fuss.

I found that you do not need to tell them everything at once. Little bits of information are easier to take in when they’re young. The way I explained it to my son was similar - ‘mummy has a naughty boobie’ but with a bit more science thrown in. I said the doctors needed to do an operation to take away the bad stuff and to make mummy well again. They then need to give mummy some medicine to take every day to stop it coming back.

After I had the mastectomy which was always planned, my husband told him that the doctor and I agreed that it was best to take mummies boobie away to be sure the bad stuff had gone. We told him I would be very sore when I came home from hospital and would need to be treated very carefully and gently. No knocks and bumps and mummy would need to rest.

He was a bit surprised to see the two drain bags and scared to sit near me when I came home which made me a little sad. It was in pain for 2-3 weeks but by week 4 much better and i’m coming up for week 6 now and doing everything I did before.

My eldest (11) saw me changing one day and asked to see the scar, he wasn’t shocked and was fine about it. The 6 year old was quite scared, didn’t want to look but then one day came up to me and touch my mastectomy side and said ‘no boob and touched the other side and said boob’ I then said the doctors were going to give me a special boob to replace the other one but I could remove it at the end of the day as it is was plastic. He since seen my chest and what happy to sit there in my room whilst I got changed.

I know yours is younger but hopefully he’ll take it all in. Might be worth in the run up to your op saying that it’s a bit sore and not too touch it but you could hug him the other side.

Hope that helps :smiley:

Had the genetic testing not long after my diagnosis and it came back neg last week which was great! Hope you’re doing ok now xxx

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Thank you, this is so helpful and reassuring :heart: god knows how I’ll stop him jumping all over me, he’s wild!! Hope you are doing ok xxxxxxxxx

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