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.RegardsWinnie

@Yellow_Daffodil It’s an unfortunate aspect of breast cancer that decisions often need tobe 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 allunusual to need these conversations. Most of us have had no practice at this sort of thing before! Best wishes.

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

Hi thereMy 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.🌺

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

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.

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Afraser
Member
4 years ago
@Yellow_Daffodil

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.
FLClover
Member
4 years ago
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 💟

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