Lumpectomy tomorrow - lobular cancer and so scared

laurie123

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.

AllyJay

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

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.  

iserbrown

@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

Afraser

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. 

Julez1958

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”.
🌺

arpie

Hi @laurie123 - sorry to see you here, but you're in the right place for info, support & guidance.  Give the Helpline a buzz if you'd like to talk to someone ....

Where abouts are you?  You can add your general location (Town/City) in your Profile ..... click on your name, then the little figure next to the 'avatar' to edit your Profile xx. We may have members living nearby who may be able to point you to specific local knowledge/facilities ....

Mine was also Invasive Lobular - and like you, mine was missed by the Breast Screen Bus Mammogram ..... only to be found 4 months later by my GP when she did a boob check at the same time as a pap smear ..... so it MUST have been there but was not picked up.

I've been told that your staging (what level the cancer is) is dependent on whether MRIs are used .... but I hope you did raise the issue with your surgeon yesterday & are comfortable with what they said.  Personally, I believe ALL diagnosed with BC (and other cancers) should be given a full body scan (CAT/MRI) to have a 'picture' of our bodies at that point in time, for comparison, further down the treatment path ... as you'll be monitored for at least the next 5 years.

I am guessing your surgery went ahead today & hope that you are feeling relieved & happy now that it is 'out' .... I was scared SILLY before my own surgery - and the relief afterwards was just incredible!!

When you have a minute, check out this post - it has a lot of info on 'other areas' on the forum that may interest you - where you can actually have a laugh (we all need a laugh!) show off your fur kids, your garden or art & craft ...... as well as 'tick sheets' to fill in before your actual appointments with your medical team, so you have something you can give them & don't forget to mention bits (it is easy to forget stuff when face to face with the team) ... 
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Another post, Podcasts re Dr Charlotte Tottman's experience when she was diagnosed with breast cancer (she is a psycho oncologist - specialising in treating BC patients) .... and as with other health professionals, she was amazed at how it affected her, personally & professionally!!
https://onlinenetwork.bcna.org.au/discussion/23866/podcast-series-upfront-about-breast-cancer-what-you-don-t-know-until-you-do-with-dr-charlotte-to/p1

Take care, all the best for your pathology results - make sure you can take someone with you to your early appointments & consider recording them on your phone, for later reference, as it is SO easy to forget what was said at the time! xx

GenK

My Nana didn’t have MRI, she had lumpectomy and it was caught by chance and so early she thankfully didn’t need any further treatment, even the radio they were expecting to do. My mother was caught when it was larger (33mm) and early lymph involvement so chemo then radio post-op but no MRI. 

I guess it’s up to you and everyone is different, I just know with Nana having the surgery asap it made a big difference, and my grandmother was a few decades ago but delayed treatment and it spread during that time and became metastatic. Of course speak with your team, everyone is different. Personally I’d go ahead with the surgery and following the results decide from there, the pathology from the lumpectomy is very instructive in further treatment advice and decisions. 

It’s definitely a whirlwind, and a lot of information. It’s completely ok to ask your team even if it feels trivial like should I get some breast pads like for breast feeding to give some padding to reduce pressure on wound site, or can I drink x, you may not have questions like that but especially when bigger like considering delaying surgery it’s completely fine to ask if an MRI would make a difference in surgical recommendations. 

Hth and that things travel as smoothly as possible 🌺

Blondy

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

laurie123

Thank you so much everyone. Had my surgery late last night (no MRI), and recovering well in hospital today. They are going to do CAT scan & some other precautionary scans while I’m an inpatient today. 

Surgeon just saw me though & the hook wire (inserted by a different dr in radiology) must not have released the spring or something. So although on imaging it looked secure, when my surgeon opened my breast &
went in, the wire actually moved off the lesion . So he told me he was guided via ultrasound as to its location,& he also took extra wide margin to try to make sure. OMG i knew the wait for results would be long, now it’s even longer. OMGi hope what he removed unguided by the wire was the exact area. What a shame. I had a feeling something might go wrong with the hook wire darn it 

sixofnine

I too had hook wire lumpectomy for DCIS (3 weeks ago) which went well, except for unexpected discovery of 28mm invasive lobular tumour in the segment that was removed - I am now waiting for full mastectomy in a couple of weeks time.  Just saying this because I was so shocked by the discovery of the tumour, as were the medical team!  I was congratulating myself on keeping up all my regular scans, which picked up the tiny Stage 0 DCIS - still struggling to understand why the large lobular tumour was missed.  I'm now learning to expect the unexpected - and to ask more questions.

arpie

Sorry to hear you have to go back for a full mastectomy @sixofnine - that will definitely have been a shock to you and your team! .... Sadly invasive lobular doesn't always show up well on mammograms or even ultrasounds .... as it doesn't form a 'lump' as such - it can be more of a 'sheet', like a web .... 

Take care & All the best for your next surgery & treatment xx

Blondy

@sixofnine that is a real bummer and would have been a shock, and to have not been picked up. 
@arpie,mine was lobular 55mm and quite a bit lump. The scary thing was that I never noticed it. It wasn't like a little pea but narly. It was like it came up overnight. When I shower I am always concious when soaping my breasts abd where the lump was, above the nipple on the front ,I still wonder hiw I missed it. It was my husband who told me as we were about to go to sleep abd threw his arm over me. Those lobulars are sneaky little critters.

laurie123

@Blondy I’m so glad to hear you are doing fine. Love & best wishes to you also.
@sixofnine - I'm so sorry that would have been a shock indeed, that is one of my greatest fears, that being lobular i have read alot of that happening.  I want my test results back but at the same time I am not sure if I am brave enough to receive them. My first full day at home post lumpectomy, and I am having a bit of a rough time.  Trying my hardest but my head isn't doing well.  All the what ifs and unknowns....

Blondy

@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

Afraser

Good advice! Letting go of stuff is beneficial for us all, irrespective of a diagnosis. Holding on to stuff is rarely a good idea, and if there is anything lurking unbidden in our lives, it seems that a cancer diagnosis will sniff it out and dig it up! For many, it’s the first serious intimation of the simple fact that none of us will leave this world alive! And that can be very daunting. As someone who thought the Jane Eyre philosophy was a workable practice (‘I will keep in good health and not die’), cancer required a wee recalibration. Some of us have found the process liberating and rewarding. It’s worth a go.