Invasive lobular carsinoma grade 1

Not necessarily

i had exactly the same questions. For me if it was hard to detect I was like get rid of the whole thing!

my surgeon was adamant that the prognosis with full mastectomy was no better than lumpectomy with radiation of the remaining boob (and in my case collarbone and arm pit area) 

just be forewarned - I had to have 3 operations….. first lumpectomy did not get clear margins (not uncommon with ILC as so hard to see) . My third operation was for a hematoma , that was just unlucky. 

also common for ilc to present smaller on scan that in reality and to be sneaking in a lymph node. Which is why they will probably want to remove some lymph’s to check when they do your boob op.

its not a big deal - operation wise. Head wise ….. yeah well I don’t need to tell you!!

also - sorry rambling - ilc’s in general I believe tend to be estrogen positive and slightly lower on the oncotype score. If that’s the case - you’ll likely be on the hormone blockers for a bit. But you probably know all that!

Hello

In similar circumstances 8 years ago l wasn’t given a choice. The surgeon just said it had to be a mastectomy. But 8 years is a long time in breast cancer treatment!

I was 71 and wasn’t that concerned about losing a breast.

The other concerning areas all turned out not to be cancer. 
There was no lymph node involvement and l am now on Letrozole for 10 years. Not great, but hopefully keeping me safe.

All the best for your future treatment.

x

Hi thanks for your reply. I have been told this over and over and I am sure it’s all true that the lumpectomy is absolutely safe and fine, iv spoken to as many breast care nurses as I can and they all say the same. I think it’s just in my mind and my family and friends advising me to do that is it considered an over reaction if I do chose to have the mastectomy?

Are you having an MRI annually I feel like we should have that?

Hi Worcestershire24

I was diagnosed with ILC grade 2 in June. After several scans and MRI scans I had a breast conserving lumpectomy and luckily clear margins and lymph nodes. The size of tumour on MRI was 2cm but was 4.8cm at surgery so they had to remove at least half of my breast.

I had an Oncotype DX score which was 27 ( I’m postmenopausal) and was advised to have EC chemotherapy followed by five days radiotherapy and tablets. I’ve had two chemo treatments and although nausea and fatigue are not nice I have found this manageable so far.

I hope your journey is a good one and sending you positive vibes! X

Hi I’m lobular and my team are adamant that outcomes are equally good for lumpectomy or mastectomy. I’m having chemo first to try and shrink my tumour as it also showed up bigger on mri compared to ultrasound. It went from 46 to 64mm - lobular is sneaky! X 

Hi. I wasn't diagnosed with lobular. Mine was 7mm ductal, ER8 pr6 HER2 low, stage 1, grade 2 masectomy was never mentioned and I had no further tests before having a lumpectomy.

After surgery things changed it was now 35mm, stage 2 due to it being over 20mm and was now both ductal and lobular, clear margins, clear node. Oncotype score was 14. I had a massive melt down as they refused to do a post surgery MRI to check if anything hidden in my other boob. I have managed to get them agree to do annual mamograms with contrast rather than standard mamos.

I since had 5 plus 5 boost radiotherapy sessions and my first bone infusion was Monday.

Sue x

Sue

just to say…… hope you don’t mind my mentioning - you should ask them to do an ultrasound too when you have your mammogram. I think I’m right in thinking that lobular is notoriously hard to spot in mammogram (2 mammograms missed mine) . Also if you have dense breasts ultrasound is very useful 

Thanks all for your replies. Just to update I have decided to go for the mastectomy and reconstruction as there is about 4 areas of lobular that they can see on MRI. My lymph nodes appear clear at the moment but having a few taken out to look out soon hopefully they come back good x

Hello, I was diagnosed with lobular, but it was very visible on my breast and during tests found another one. I had a mastectomy, as advised by my surgeon and happy that  I  did (I'm 71). It's been a rollercoaster, but I put my trust in the experts. Take every day as it comes, letrozole has its issues (continuous headache) some aches and pains,  but manageable xxx

Hi I had mastectomy 5 weeks ago, same reasons as you, doing great, on letrozole, all ok. You've got this x