newbie lobular invasive :-(

Hello everyone.New to this. Found out last Thurs I have lobular invasive breast cancer. Find out this Thurs what the actual plan will be once all the results are back. I’m 37 and I have 2 gorgeous boys 12 and 6. I was thinking once I know the plan I might tell them next week to get their heads ready for it. Any good advice of telling kids???

Hi lala77

Sorry you haven’t had any replies to your  first post on the forums as yet, but hopefully someone will now see it and come back with some good, honest support.

If you need someone to talk to in confidence and in person, then please don’t hesitate to contact our helpline team, they’re here to support you.  0808 800 6000 lines open weekdays 9-5 nd Saturdays 10-2

Take care,

Jo, Moderator


I am recovering froma one side mastectomy because of lobular Beasty

Sorry my children are all grown - didn’t make it any easier in the telling though and my grandchild - much younger than your 2 we told I have a bad shoulder, made more sense to her and she was oh so gentle.

there are a couple on here who have told young children and there is a book/story i can remember they used which was helpful

I’ll see if I can point them in your direction - if I can find them!!!

Perhaps they will find you anyway


All the best, don’t be down, 

I always say keep smiling (very hard I know) but it helps. Do admit to yourself you are overwhelmed by this thing and have a good cry if you need it 

Keep popping in here I and many others find it a great source of strength and knowledge

Oh yes 






Hello lala - sorry that you have been diagnosed but like beryl says you will gets lots of support here x. I found this publication quite helpful
My children are older 19 and 15 twin girls - but I did find it helpful when is told them - my bCN recommended telling the school also and I’m really glad I did as they have been alert to any difficulties for my girls ( especially as gcse starting) x I waited until I was going back so I could say " I’ve been told I’ve got cancer and this is what we are doing" but I have to say that things changed with more and more tests - so maybe it doesn’t really matter when!
I try to be super positive for my children and have relied on this forum for my down days - i do find my girls are much more " tuned in to me" but you will prob be surprised how matter of fact children are. Sending lots of hugs and best wishes sarah

Ps meant to add I’m lobular invasive ( 45 years) - there is light at the end of the tunnel!

Hi lala, 

Its a doozie isnt it. 

Im 45 have 2 girls age 10 &11. I was diagnosed in October.  had a masectomy in december,  starting chemo next week.

I quietly told them I have a lump.  It doesnt hurt. (They could feel mine under the skin it was large )

It had to be removed cos it will take up too much room.  

Then I’ll need chemo , which will make my hair fall out for a while. 

I talked to them about pink ribbon fund raising,  they always buy a pen or something,  and how all that money means they know how to fix it as they studied lots. 

They had overheard a bit, one asked me in the car on the way to school if I had cancer ( swerve! ) as I too was waiting for the plan.  

Ive spoken to their teachers as well incase of school melt downs.

Got a lovely book called the year my mother was bald,  explains everything from a childs view point,  I learnt heaps too ;) 

Its so overwhelming,  my girls have been fine, they dont watch hospital dramas and they trusted what I told them.  

Much love xxx 

Thanks for those tips girls. Nice to know your not alone :-). Think I’ll talk to the kids at the weekend. I downloaded the brochure from breast cancer care site on how to tell your kids which was helpful. I will tell the school, that’s a good tip, thanks jets. xxx

Thanks for your reply Keepingmumsane. Hope your chemo goes as well as it can. All for the greater good :slight_smile: xxx

Hi Lala
Also hi to Sandie & Sarah (met in previous threads) lol
I was diagnosed in November with invasive lobular, had left mastectomy in December & start chemo on Tuesday. I am 46. Am afraid can’t help re telling children as mine are 19 & 16, it was however one of the hardest things I had to do.
Think my 16 year old heard the C word and thought the worst.
Wishing you lots of luck, take care all

How you feeling Alison? I’ve has a right old battle with pain management but seem bit better last two days - oncology next weds x hope chemo goes ok for you ( as ok as it can x)! Get a bit lost on the threads so will be thinking about u x

Turns out I am Er + and her2-. No chemo unless theres any nodal involvement. They managed to get a free theatre space on tues, so going in for bilateral mastectomy. Quite good, not too much time too think. Consultant didn’t want to take away both but I really pushed for it because lobular has an increased chance of spreading. Have you guys went for 1 or 2?? Hope you are all well xxx

Hi lala I’m bilateral mx her2 negative hormone positive but still have referral about chemo possibility - I’m going to request oncotype dx test to assess the extra benefit of chemo x take it easy post bilateral and if u have any questions feel free to message me x sarah

So interesting hearing about you guys experiences also. Jets how did you find recovery from bilateral?? Did you have implants?? I know everyone’s different during our journeys but for me the had to go, even though I know there’s no significant difference in mortality. My head will easier knowing they’ve gone. Thanks guy’s xxx

Hi lala - I’ve delayed reconstruction decision for now. There was a definate sense of relief when they were gone so I identify with that . Everyone seems different on post op - I had good arm movement from day one and was very careful not to lift anything etc in esp first week as you need to be aware that there is muscle and nerve damage you can’t see or maybe feel due to meds at the start. Buy a soft v cushion as you need to sleep on your back and will find it a godsend! I’m in more pain then others but had a particular situation post op - you will be fine xxx I’m sick to death of the exercises but you do need to do them as it helps stretch everything out. I’ve also has little electric shock sensations as the body has woken up more - it’s fine though a lady on these forums said to rest your hand over the area and it really settles itx I showered in cling film for first week after going home in advice from bCN so get in some cling film too!! Please get in touch after your op and I will Definately hold your hand through everything afterwards! S x

Hi Sarah
What a nice surprise to hear your doing so well!
Would be good to hear how your doing I have 2nd chemo next week but doing ok. Tried the cold cap but honestly can’t continue with it so wig fitting tomorrow & good supply of scarves at the ready!!
Are you going down chemo route?
Feel free to message me, would love to hear from you
Alison xxx

Hello hope you don’t mind me joining in? I’m having a really bad day each time I go for a result things change for the worse. I had a mammogram, ultrasound core biopsy the result was invasive nodular prov grade 2 receptive to oestrogin & progesterone. Plan was mastectomy & reconstruction straight away. Surgeon wanted a sentinel lymph node biopsy just to check before op as doing reconstruction. Had results today took 8 nodes 4 affected and I am stunned to be now told the type is actually lobular & need MRI, CT & bone scan my op planned for next week is canceled. I will need radiotherapy & chemo and maybe chemo before an op. No reconstruction now till later and as it is hard to detect and my family history is very poor they are concerned about my other breast again (they said this previously then changed mind). How can it completely change? I’m shell shocked and I’m worried that my HER status is going to change too. Really concerned about the other scans now and results. Hope you ladies are doing ok x

Hi Bernie
I am sorry to read that you are having such a difficult time at the moment, along with the support here please feel free to call our helpliners to talk things through, they are on hand with practical and emotional support for you on 0808 800 6000. Lines are open 9-5 weekdays and 10-2 Saturdays

Here’s a link to the lobular breast cancer information from BCC which I hope you will find helpful along with further support ideas for you:

Take care
Lucy BCC

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Hi Bernie x hugs to you x I had many weeks of testing during which plans changed and I totally identify with how u feel like mat pulled from under your feet x hopefully the next tests will take place quickly and when u are sitting waiting just remind yourself it’s so you have the full picture and can understand the clinical advice afterwards xxx ivr had bilateral mx and am getting through chemo (4 left) ; I was diagnosed end of November and just wanted to reassure you that you do get into a better state of mind when you can understand everything that’s going on xxx

Hi Cress and welcome to the BCC forums
As I mentioned to Bernie earlier, please feel free to use the BCC support services to help you through this difficult time

Helpline 0808 800 6000 weekdays 9-5 and Sat 10-2
Support ideas available here:

Take care
Lucy BCC