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invasive lobular breast cancer


Re: invasive lobular breast cancer

HI easybee

I've just had an MX - in fact I'm still in hospital on day five but getting let out this evening. In early May I was diagnosed with a largish (size seems to keep changing according to who I'm talking to) lobular cancer in my left breast . There was never any chance that I wouldn't have an MX although I was put on Tamoxifen for a six weeks to see if it would shrink the tumour - it didn't much so here I am.

I'm really sorry you're on this site too - it's such a shock isn't it? And so hard to come to terms with losing your breast I have found. I think everyone thinks I'm fine about it all - mostly I am. But not really and I don't know that I'll ever not miss my breast. I'm not as large as you - 32E - but I have quite a small frame so they're prominent.

I too elected for immediate reconstruction because I couldn't cope with the idea of no breast on one side. They can only do a temporary recon at the moment because it's likely that I'll have chemo and radiotherapy in a few weeks time and that would damage the tissue around the recon. So I've got an implant in, which they'll start pumping up in a few weeks - hey ho. Better than nothing is my view.

I found huge solace in communicating with women on this site when I was first diagnosed. In fact I posted a question about reconstruction and had immediate replies. There seem to be pros and cons to all types of recon, and some women seem really happy with the results and some not. The key thing from my surgeon and the Breast Cancer Nurse is that I'm never going to have one that looks or feels the same as the one I had. That's hard to hear, but I'm starting to come to terms with it.

As my husband keeps reminding me - it had to go - Or I would! So faced with that choice you just have to make what seem the best choices for you. And I would rather be alive than not...so. Reconstruction here I come. I may well have a reduction or a lift on the other side to make them match.

I've found the whole experience to be a whirlwind of various emotions and an introduction to a world of hospitals, illness, operations that I never expected to deal with. Who does? But in fact the last week has not been as bad either physically or mentally as I thought it was going to be.

I wish you all the very best



Re: invasive lobular breast cancer

Isn't amazing (or maybe not!) how things have changed over time. I have had mastectomies of both breasts for lobular. But the 2nd one in 1999 I had to fight for. The tumour was 7cm but the surgeon wanted to do a lumpectomy (breast size was 34C). I had to see a psychologist before he would agree LOL. Often easybee they don't give us much time to think about this and when it is all so new we are starting from no knowledge or experience to call on. It sounds a good idea to give the helpline a call to help you with any decisions and options you might have.



Re: invasive lobular breast cancer

Hi there

Sorry you have to join us here. My cancer is different to yours I have dcis and also invasive too.

My mum was diagnosed with lobular three years ago and has her yearly mammogram this week. SHe had a partial mastectomy, but they did want to do the full one, but she said said no. Her tumour was over 7cm (it was a thickening, but not a lump). She took Letrazole for four month before the surgery and because her cancer was hormone receptive, the tumour shrunk over 6cms with the drug!! She didnt have node involvment too and her area was alot bigger than yours, so hoping that might mean yours wont be affected too.

Good luck and keep us posted.



Re: invasive lobular breast cancer

Hi Easybee

I'm sorry to hear about your diagnosis. I was 44 when I was diagnosed with lobular cancer (ILC) too. My tumour was large (8cm x 6cm) and seemed to come from nowhere. I also had big breasts and was a 38F.

One of the reasons that they tend to do a mx with ILC is because tumours are often larger at time of diagnosis with ILC and also they are often multi-focal (ie in more than one place).

You may want to think about having a breast reduction on the breast without cancer. That way the reconstruction will probably be easier if it's going to use any of your own muscle/fat. I'm no expert though.

(I opted to have a double mx and have not had reconstructions

I would strongly recommend ringing the helpline and talking this through. I found their knowledge and expertise so helpful when trying to make decisions or understanding procedures.

Everything is just one day at a time. I'm sure you'll find lots of support on here with any questions or worries.

take care, Elinda x


Re: invasive lobular breast cancer

Hi easybee,

I'm so sorry you've had to join this rotten club but we will support you so feel free to share your feelings with us. OAL is right - the helpline is very good if you want to talk to someone about what you are going through.

I was diagnosed with multi focal ILC in October last year and was also told that the only option was to have a complete mastectomy. Where I live the hospital is too small to have a plastic surgeon so I had no option but to have delayed recon but it hasn't been too bad simply because I am very small at 30D.

Have you been assigned a Breast Care Nurse yet? If so remember that you can talk to her about all your concerns too as she is there to help support you through treatment and beyond.

The early days of diagnosis are always tough as you try to come to terms with it all so if you have any questions fire away and we'll do our best to help. You can also PM me if you want to talk privately.

BCC also have some excellent fact sheets that you can download that explain all the different types of treatment.


Nymeria x


Re: invasive lobular breast cancer

hi easybee, What a shock for you to find yourself in this position. It must all feel like a whirlwind.

It does seem to be a post code lottery how you are treated. After my diagnosis I was whisked away to a seperate room by a breast nurse and asked how I felt about the news, and she asked my husband how he felt.

you might like to ring the help line tomorrow. they are not just there to answer questions but to support us and discuss how we are coping.

Or you could share how you feel on the forum. People come along with all sorts of different reactions, and it does not just help them to type it all out, but it helps other newbies to read it and if appropriate think 'gosh thats just how i feel"

Sorry you find yourself joining this club. There will be woman with the same diagnosis along soon.


invasive lobular breast cancer

hi all, i'm 44yrs and just been diagnosed with the above and have a 43mm egg shaped lump, apparently due to clinical guide lines i must have a mastectomy, i have 40dd breasts! i have opted for immediate reconstruction as after heart searching hours i cannot live with a false breast for the next two years...am meeting surgeon this week and hopefully undergoing surgery 2nd august, then its the waiting game to see if its spread...fingers crossed it hasn't...if anyone in a similar position wants to share their experiences i would be glad of someone to talk to...and the one question no-one has even bothered to ask me..."How do i feel?"....don't know if anyone else has found that...good luck to all of us and lets beat it!!!!