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.
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.
@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
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.
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.
Hello, im sorry to hear about your diagnosis.
Im 33 too with a 2 year old.
Having my second chemo Weds HER2 positive with around 3 nodes swollen but one tested.
I just want to reach out to you with us being the same age.
How are you feeling with treatment? And did you use the cold capp?
Hope all is going well. Its so overwhelming and soul destroying when we have little ones to think about.
Luckily all positive things have been said to me also. Just need to get through it all now. Xx
Hi Jeml,
Sending loads of love and hugs to you I was going to try the cold cap but it was in use and the second machine was broken (lots of tears followed even though I had prepared myself to loose my hair!). Finished chemo now and it’s the best milestone and I’m feeling so much better, almost forgetting I have cancer! Mastectomy and axillary clearance on the 6th then next plan to follow. Hoping you have lots of support and help with childcare, chemo is gruesome especially when you have a little person to run about after! Xxxxxx
Sending love and hugs back! Its a tough journey but your nearly at the other side of it!
Which type did you have? If you dont mind me asking.
I see you have a little one too. Hope you are getting a lot of support! Its not fair that we are here in this position with little ones. But there is light at end of the tunnel we just need to get there.
How are you feeling now?
For me with chemo its the injections… make me feel sick or be sick sometimes.
My hair is shedding still even with cold capp, i had a good cry a few days ago and now im kind of over it. Hair grows back and its a small price to pay. I told my little one that mummy’s hair might come out with medicine but its making me better. Just to make her aware.
Today she said dont worry mamma your hair will go back and hugged me and i cried!
Its so hard isnt it.
How did you respond to chemo? Did you feel any shrinkage etc? Xx
I have invasive ductal carcinoma, er/pr- her2+ and in lymph nodes too. My chemo was doxetaxel and carboplatin, with phesgo injections for one year. I think my worst symptoms were the nausea and fatigue, I really struggled with that. The vile taste in your mouth is also grim! I struggled with a funny tummy and nosebleeds too, along with a little of everything else! BUT my post chemo MRI showed everything had shrunk from a 6cm total to 1.4cm!!! It feels so worth it. Hair loss seems a small price to pay in the grand scheme of it all doesn’t it still crap BUT we push on! Am feeling great atm (minus a few tears about everything). Hope you’re feeling ok, kids are so resilient and adaptable to all of this xxx
How did the chemo effect your lymph nodes? Did it dissolve in them too.
They told me i could get total response which i think is quite common in our type.
Yes the awful taste in mouth eugh! Got it today.
I got a wig on today and off to take little one for some arts and crafts.
Have you had your operation yet?
6 rounds for me and operation followed by radiotherapy and then herceptin x
Thats great! Yes we are defo having the same treatment plan. I got two week of feeling fresh now till round 3.
Already decided i want the booby off!
All these celebs that find out they at risk and have them off and reconstructed… yep its going… both of them!x
I just wanted to drop a note to say you’re doing an incredible job. Juggling breastfeeding and managing a diagnosis like yours must be challenging, but it sounds like you’re handling it with a lot of strength. I’ve read that staying positive and connected with your healthcare team can make a big difference. Also, having a good baby monitor, like a beste babyfoon met camera, can be a game-changer. It helps keep an eye on your little one while giving you peace of mind. Take it one day at a time, and remember to give yourself some grace.
god knows how I’ll stop him jumping all over me, he’s wild!! Hope you are doing ok xxxxxxxxx