Setting In

Hi @Yellow_Daffodil Everyone has given you the welcome so please take that as given.  I was diagnosed with ILC from a standard mammogram - didn't feel anything or notice changes.  ILC is a bit trickier to self-observe.  I did have lumpectomy followed by a mastectomy due to size and margins.  It's not uncommon with ILC but certainly not a given so my advice for what it's worth is just go with what you know.  If there is anything further to discover, you will find out when you find out, but worrying won't change it.  You are already doing everything you possibly can.  All easy to say, but I understand that vacuum of a place that your head is in right now.  Best wishes.

Thank you for your response @Mazbeth . I think we were posting at the same time.
If my margins are clear I will be doing radiation and am  estrogens and progesterone receptor positive so will follow with hormonal treatment. I think my brain caught up with the diagnosis last night and went into over drive. Hopefully tonight I will have a better sleep.

Thank you @Julez1958 . Your story is almost identical to mine so your input is invaluable. Even down to when GP told me.  My hubby was shaking but I was still like a statue just staring at her and I felt like the desk got wider. 
I think once I have my scans on Thursday I will feel better as then I know more what we are dealing with and hopefully be able to rule out any other issues. I feel like I have worked through the stress for today so thank you everyone for your support. I need to allow the process to happen and release controlling something that is not in my control at all.  For now I'm spring cleaning the 🏠. That I can manage

Hi @Yellow_Daffodil, I am sorry you are joining us here and we all can relate to what you are feeling. You will find endless support here and a lot of knowledge and great tips. I agree with everything that has been said here. I too was diagnosed with ILC almost 2 years ago. I remember those initial days very well. Whilst I have vivid memories of that time, there have been changes in treatment protocols in those 2 years. There is a test that can be done on your tumour - the oncotype test - which will cost you about $4000 to have done, but it can provide a lot of extra information about your BC. This was not offered to me at the time, but it is now offered particularly to women who are post menopause as it can give more information about whether chemo will be effective etc. This is a ‘user pays’ test here in Australia, but is standard in the USA. As mentioned, there is a Facebook group that is based in the USA and the members always speak of their ‘oncotype scores’. This may be something you want to discuss with your doctor. 

Hi there
My cancer was also lobular and quite big at5.5cm ( not picked up on mammogram , I found a lump).
my Dr said it’s harder to get clear margins on lobular as it is like a spider web  rather than a neat lump .
I decided to have a mastectomy straight up and it was the right decision as when he operated it was spread through my breast right up to my top of breast.
Everyone is different so it’s hard to give you the right advice but I agree with what someone said above , because you are in shock following the diagnosis ;( I felt like I was looking down on myself out of body when my GP told me it was cancer ) it is really helpful to have someone with you at those early medicals - my hubby was great.
The other thing is to a certain extent you need to trust what your Drs are telling you - we have a world class medical system in Australia and whether you are in the public or private system, you will get great cate in your breast cancer journey.
All the best.🌺

Your doing well @Yellow_Daffodil. Keep breathing deeply. We all understand that anxiety and your human. It's normal to catastrophise initially and worry. However that worry and what ifs don't change anything.

It's a process and at this time all you try to stay in the present moment. Big breaths help that as does being busy, walking  or anyone you can get absorbed in. 

At night when I woke up (still do) I sometimes either read or listen to a podcast. My mind would wander sometimes but then I would get back to the reading etc.  At night try something other than lying worrying. 

It is great you got checked. Look after yourself and let us know how you are going. Best wishes 

Thank you everyone for your supportive responses.  It is so hard to make choices when the information you need is still in the breast. I need to just breathe.  My head starts spinning with what ifs as soon as my head hits the pillow. Waiting in this game is just the pits. I think my anxiety takes over and I want to pre empty every next move which is not possible.  🤯 Breathe.🧘‍♀️

I listened to the webcast and I fall into the category where mine wasn't picked up on mammogram and I felt a strange lump so headed to Dr. I worry as I don't know how long this sneaky thing has been in there. Even my surgeon said she was amazed that I felt it as it doesn't present to her feel like other lumps. Moral of story get all changes checked.

So sorry to see you join the club that no-one wants to join @Yellow_Daffodil .... the first weeks are always a total blur - and full of fear, even anger & the 'what ifs'.    ILC is considered the 'sneaky one' of all the BCs, as it has those 'fingers' that can spread out a bit .... it doesn't always show as a 'lump' as such, so is often difficult to find (or even see) with a regular mammogram. 

Where abouts are you? We may have members in your area who can point you to specific services available to you.  You can add it by clicking onto your "Profile" and editing it - adding your 'town or city'.

As @FLClover says - they won't know until they get it out, to see if it is bigger than they thought and only the pathology will show the clearance margins ..... Surgeons don't normally do a mastectomy unless they have to ... mine was ILC (under the nipple) and I had a lumpectomy. I didn't have chemo but did have radiation & now on hormone tablets.

The Yanks have a dedicated Lobular web site that you may like to look at and I am on a Facebook ILC group too. (https://lobularbreastcancer.org/  (An American website is the main organisation that is especially dedicated to invasive lobular cancer.)

take care,take deep breaths and take one day at a time. Try and keep busy between the ‘waits’ doing things you love. It mucks with your brain as much as your body xxx

ask any questions you think of .... there are no silly questions. Xx

@Yellow_Daffodil

Here's a couple of links from the BCNA website for you to learn a little more about your type of Breast Cancer 

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/episode-22-invasive-lobular-carcinoma/

Deep breaths 
It's doable!
Understanding and a treatment plan will bring focus 
Take care

Hi @Yellow_Daffodil  

So sorry you find yourself here. It really is so overwhelming in the beginning.  I had a lumpectomy and node biopsy. Surgeon took a big bit out of me , about the size of an orange but luckily all the margins were clear. Relief! Hopefully you will get that result too. Have a chat to the Surgeon about the ' what if'. Most surgeons understand this is a stressful time and decision making is hard. You can call and talk to them before your surgery. They should take your call. Also have they assigned a breast care nurse? Maybe chat to them or call the nurses here at bcna for a chat. The whole thing is we don't have those crystal balls until they test via pathology. It is the pathology that determines the treatment. 

Try not to get too far ahead of yourself and don't google if you can. The information on bcna is helpful. Keep busy and muster your support. Get a couple of meals prepared for post surgery as you probably won't feel like cooking. Recovery is ok from the lumpectomy but it does take a bit of time. You won't be too sore. 

Take deep breaths often, maybe a bit of walking or other exercise to help prepare for your surgery. Believe in yourself. You can do this and i bet you are stronger than you think. Big hugs to you. 💐