Hello, I was diagnosed a couple of weeks ago with what looks to be invasive lobular cancer, and I am SCARED. I meet with my surgeon this afternoon, and my lumpectomy is scheduled for tomorrow. It was picked up almost accidentally on an ultrasound 7mm. I have been reading lots and getting educated as much as possible, sometimes to my detriment, however I see an MRI is often recommended pre lumpectomy particularly for lobular cancers (as they are sneaky, and can often be in more than one place, or more than one breast). However my surgeon says MRI is not necessary prior to surgery. I will be meeting with him this afternoon to raise this issue of the MRI however the window for it to happen with surgery tomorrow will be difficult. Do I postpone my surgery and insist on an MRI? I guess I will know more after my in person appointment today however I suppose i am wanting to know if many of you had an MRI as part of the pre-surgery process, to get a perhaps more informed picture of where things are at?Thank you so much for any help and replies. what a whirlwind this all is.

Lobular for me too. Five years ago today. Never a mention about an mri. 55mm so followed up with chemo rads and hormone treatment and doing fine. Fingers crossed all goes well for you

Hi there @laurie123. My cancer was different to yours, being ductal and not lobular, however, I've been a member of both this group as well as another for around six years, and one thing that crops up again and again is this. Follow your own gut....be your own advocate...and don't let someone's in a white coat fob you off. Most, if not all of us have had scans of one sort of another before surgery. MRI scans and CAT scans as well as bone scans and more prior to surgery. An ultrasound or mammogram is a starting point, but I personally would push for what you feel necessary to set your mind at ease. As you say, lobular is a sneaky bastard as it often does not form a discernible lump and can be spread further than thought, or may even be hiding in the other breast. I don't think it will do your already fragile mental health to spend each day (and night) worrying if there's more than is known at this point. Follow your gut and is surgery is delayed by a day or two...so what. If there is more somewhere else and is not found, the consequences would be rather more important than mucking up this knife jockey's schedule. Good luck and big hug...Ally.

@laurie123 I hear your concern however your medical team will recommend what is the most appropriate treatment for you. Personally I did not have a MRI, not all doOnce surgery has taken place a clearer picture of the pathology of where you are at is revealedFact sheet: Breast cancer pathology | Breast Cancer Network Australia (bcna.org.au)Types of breast cancer (bcna.org.au)A couple of links from the BCNA website that I hope you will find helpfulTake care and best wishes

Hi there I also had lobular cancer - despite having had a mammogram only 18 months prior to finding the lump which showed the all clear.Understandably I was a little wary of the medical professionals at that stage.My fabulous ( female) GP referred me to a breast cancer surgeon who she said she would go to if it was her.I ended up having a double mastectomy ( my choice) , radiotherapy and now at least 5 years of hormone therapy.I have followed all the advice of my medical team on basis they are the experts.Two years on from my diagnosis I am in a much better headspace.No one said this was easy but with one out of seven Australian women having breast cancer the medical establishment have got this.Take care and dont hesitate to post here - we all “ get it”.🌺

@laurie123 I'll post this advice I got off my bestir, who the year before had a 5% survival rate with oesophageal cancer. Her son in law is a life coach and told her about this. She shared it with me right after my diagnosis. I can honestly say it saved my sanity and I still use this method for any negativity in my life. I spent that first day in my 'house '. There was a lot of crap in my head but jeez I felt so much better.So here it is.Thus us all done mentally. Build a house, any shape colour or size. Whatever you want, it's your house.Furnish it as you desire.It must be beside running water, so a stream, lake, river, ocean, whatever you want.When any unwanted thoughts, or anything unpleasant is said to you, or any unwanted situation , go into your house, into whichever room you choose, and wrap up whatever is bothering you (I always put my things into a box, wrap it in paper and tape it up real good).Then take it outside, place it in the water and watch it sail away. Sometimes it sails away quick and sometimes it doesn't so see it through.You can do this exercise anytime for anything.. My mantra was not to let cancer rob me of anything. To do so would give it power .Not happening. Your best friend is to have a positive attitude, because there's a lot if kick ass to do. If you want to do something and it's possible, do it. If you want to go somewhere, go. Depending on the treatments, mostly, all things are possible. Even if they're not.To limit yourself with even a thought, that you have cancer is to give it power. No no no,not happening. This is the time of our lives that we girls have to pull up our big girl knickers and go to war. Even though it's been 5 years for me, initially right after the merry go round of treatment and appointments, and you're on your own was the toughest part because it's up to us to ruse above it. That was my most testing challenge for months. I do know that I do go on, but I want you all to get through this the best you can, so if I can't be there yelling in your ear and giving you hugs, I'm here . Xx

Lumpectomy tomorrow - lobular cancer and so scared

15 Replies

Julez1958
Member
3 years ago
Hi there
I also had lobular cancer - despite having had a mammogram only 18 months prior to finding the lump which showed the all clear.
Understandably I was a little wary of the medical professionals at that stage.
My fabulous ( female) GP referred me to a breast cancer surgeon who she said she would go to if it was her.
I ended up having a double mastectomy ( my choice) , radiotherapy and now at least 5 years of hormone therapy.
I have followed all the advice of my medical team on basis they are the experts.
Two years on from my diagnosis I am in a much better headspace.
No one said this was easy but with one out of seven Australian women having breast cancer the medical establishment have got this.
Take care and dont hesitate to post here - we all “ get it”.
🌺
Afraser
Member
3 years ago
Due to a timing problem with the MRI (scheduled same day, immediately before my mastectomy) I didn’t have mine till some time after surgery. My surgeon wasn’t at all fussed about not doing it prior. It revealed nothing that wasn’t already known anyway. Your surgeon may well want to do things in his preferred order. Best wishes.
iserbrown
Member
3 years ago
@laurie123

I hear your concern however your medical team will recommend what is the most appropriate treatment for you.
Personally I did not have a MRI, not all do

Once surgery has taken place a clearer picture of the pathology of where you are at is revealed

Fact sheet: Breast cancer pathology | Breast Cancer Network Australia (bcna.org.au)

Types of breast cancer (bcna.org.au)

A couple of links from the BCNA website that I hope you will find helpful

Take care and best wishes
laurie123
Member
3 years ago
Thank you for your reply and advice @AllyJay. It is all just so confusing, but I do feel like a step has been missed. My tumour wasn't detected on my mammogram in Feb this year (or wasn't there?) and only picked up by accident on a breast ultrasound, otherwise I would be none the wiser. Very scary to think I would have easily gone on longer until it got to who knows where. so that's the main reasoning for I want everything checked, gone over with a fine tooth comb. I cannot understand his reasoning to not getting it done, why would a surgeon not want to do it?. I will find out more this afternoon. Thanks again for your reply. Off to try to drink a cup of tea....cannot eat and cannot concentrate today. Trying times hey.
AllyJay
Member
3 years ago
Hi there @laurie123. My cancer was different to yours, being ductal and not lobular, however, I've been a member of both this group as well as another for around six years, and one thing that crops up again and again is this. Follow your own gut....be your own advocate...and don't let someone's in a white coat fob you off. Most, if not all of us have had scans of one sort of another before surgery. MRI scans and CAT scans as well as bone scans and more prior to surgery. An ultrasound or mammogram is a starting point, but I personally would push for what you feel necessary to set your mind at ease. As you say, lobular is a sneaky bastard as it often does not form a discernible lump and can be spread further than thought, or may even be hiding in the other breast. I don't think it will do your already fragile mental health to spend each day (and night) worrying if there's more than is known at this point. Follow your gut and is surgery is delayed by a day or two...so what. If there is more somewhere else and is not found, the consequences would be rather more important than mucking up this knife jockey's schedule. Good luck and big hug...Ally.

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Lumpectomy tomorrow - lobular cancer and so scared

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