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The reality is hitting tonight.  I was diagnosed with ILC on 23 November and it's just been surreal.  I've been going through the motions.  Hasn't felt real until now. Had an appointment with surgeon last Wednesday and booked for Lumpectomy and node biopsy on 8th December. Having a bone scan and CT next Thursday and trying to mentally prepare for any surprises that may arise. I have had some time to think after last week's whirlwind of diagnosis and information and wondering about a mastectomy if surgeon can't get margins. Has anyone ever  gone in for a Lumpectomy but if can't get margins then direct for a mastectomy in the one surgery.  I have underlying health conditions so if I can reduce the amount of surgery the better.  At this stage the surgery is scaring me almost as much as the cancer.



  • FLCloverFLClover Sydney Member Posts: 1,445
    Big hug darling, big hug 💟. The surgery was really scary for me too. It is a scary thing. It’s also what will most likely get rid of all the cancer, so at least the outcome will be worth it. Recovery doesn’t take too long, just follow doctor’s instructions and do the physio therapy exercises which should be provided. 
    I’m not too sure about your question, but I think I might just have read somewhere that they can do a mastectomy if they do a quick  test of the lumps and if it turns out bigger than initially thought. About margins, they won’t know if they were clear til post surgery, I think. And all that also depends on your surgeon. Not all are willing or able to do all that. Also, ILC is more weblike from what I can remember having read, so not sure how plausible that would be. I think you should use the time and try to get another opinion. I know it’s stressful and costly, but it could save you a lot of money and stress in the long run. 
    Sorry if I’m not making much sense, I’m half asleep. Just wanted to send you a big hug and let you know we understand how you’re feeling. Good luck 💟
  • AfraserAfraser MelbourneMember Posts: 3,889

    It’s an unfortunate aspect of breast cancer that decisions often need to
    be made when we feel shocked and confused. That’s why it’s often good to have another, less affected person with you at consultations. Some further discussion with your surgeon will help clarify the position. It’s useful for both of you - your surgeon needs to know your preferences and you need to know, more clearly, what your surgeon plans. It’s not at all
    unusual to need these conversations. Most of us have had no practice at this sort of thing before! Best wishes. 
  • Cath62Cath62 Brisbane Member Posts: 787
    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. 💐
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,033

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



    Deep breaths 
    It's doable!
    Understanding and a treatment plan will bring focus 
    Take care
  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    edited November 2021
    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_DaffodilYellow_Daffodil Member Posts: 12
    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.

  • Cath62Cath62 Brisbane Member Posts: 787
    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 
  • Julez1958Julez1958 SydneyMember Posts: 402
    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.🌺
  • MazbethMazbeth BrisbaneMember Posts: 193
    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. 
    Each of us have tumours that are unique to us which means our treatments vary. I had neoadjuvent chemo followed by a bilateral mastectomy (BMX) with reconstruction. I elected to have the BMX and my doctor fully supported it. My ILC was 4.8cm but as you know, ILC is more an area rather than a discreet lump. It was not seen on a mammogram but was seen in an US. My lymph nodes were clear and the doctor got clear margins.  
    ILC that is hormone (+) responds very well to AI’s. Generally speaking, a lumpectomy and radiation go together, but sometimes, a mastectomy may mean radiation is not done. 
    Many people who have ILC have surgery etc and avoid chemo and have the tablets (AI or tamoxifen) for 5 - 10 years. 
    Waiting for information is extremely difficult. Write down your questions for your doctor and try to have someone with you at appointments. Try to do things you love to do and keep busy. I know that is easier said than done, but it will help. Even though all the tests and scans are overwhelming, each one is going to give more information and help you with your decisions. Take care 🌸
  • Yellow_DaffodilYellow_Daffodil Member Posts: 12
    edited November 2021
    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

  • Yellow_DaffodilYellow_Daffodil Member Posts: 12
    edited November 2021
    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.
  • SisterSister Adelaide Hills, SAMember Posts: 4,957
    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.
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