Diagnosed yesterday [invasive lobular breast cancer]

Hi ladies ,got results yesterday ,i dont no that much at moment just im having mri scan next week wed and bk to clinic thur. Dr said will need surgery remove lump and maybe some nodes ,should have asked grade or stage ,but didnt he mentioned having hormone treatment if findings arent that bad but unsure about anything else till mri results. Am aware that this type is a little  than other uncommon than other bc ,can anyone with same cancer  ,fill me in onpossible treatment or experiances ,my bc nurse isnt in today so cannot ring her.

  thanks in advance.    rose38 xx

Hi Rose
Whilst you await replies here please feel,free to call our helpliners with your queries and concerns on 0808 800 6000, lines are open until 5pm (weekdays 9-5 and Sat 10-2)

Here’s a link to information about invasive lobular breast cancer which may help along with further support ideas which you may wish to access:


Take care
Lucy BCC

Hi Rose, I posted a reply to your post in another thread. poemsgalore xx

Hi Rose, I was diagnosed with invasive lobular cancer back in September 2013 and can advise you that ILC is much more common now than it was 10 years ago. The thing with lobular is that it’s harder to detect than ductual as lobular presents more as a thickening than a lump and tends to grow flat like a spiders web. My cancer didn’t show up on a mammogram or ultrasound until I persevered with the ultrasound lady and we managed to find the lump eventually once I guided her. My lump / thickening showed up as 14mm on both ultrasound and MRI but was actually 50mm multifocal at pathology after op. I requested a bilateral mastectomy with immediate implant and strattice reconstruction which was the best decision for me (especially after seeing my pathology results). I had a sentinel node biopsy ( 4 nodes removed) and they found micromets (small amount of cancer cells) in my 1st node but the other 3 were clear so I’ve just finished chemo (as a preventative / mop up job) and start radiotherapy hopefully some time near the end of April. I then have approx 10 years of tamoxifen as my ILC was 8/8 er+ (Estrogen positive) which is common with ILC. Also I was advised by my consultant that ILC is often grade 2 and doesn’t usually change at pathology result.

Trust me when I say the diagnosis and waiting for pathology is the worst part. Once you have your treatment plan you’re able to concentrate and deal with each section 1 at a time. Please note your treatment may vary from mine and really only your consultant / surgeon and oncologist will know what path is best for you.

One thing I will say is no one wants chemo but remember this is not the enemy, it’s your alloy in fighting this terrible disease and will help you win your war if needed.

Wishing you good luck with your treatment. Stay positive, you will get through this horrible blip in your long life.

Hi Rose, mine was classed as early stage breast cancer . I’m doing really well thank you , I’m so glad chemo is now a thing of the past for me. If there’s anything I can help you with your welcome to send me a direct message.

Good luck with your MRI

Stay positive
Tracy XXX

Hi, I had my diagnosis confirmed last week, same as you invasive lobular. Had my mri last week and results & treatment plan tomorrow. Having a bad day today, feeling very emotional?
Sending a virtual hug to all, one day at a time

Just wanted to say a big thank you lovely ladies, such touching words that mean so much from people who truly understand.
Marks & Spencer dinner on its way and a walnut whip for later! I know how to have a wild time! Lol

Hi and thank you for your replies.Unfortunately I tried to correct a spelling mistake and deleted my whole post.It said basically I was diagnosed on Friday November 14th 2014 with invasive lobular breast cancer and like Alison am waiting for an MIR scan then lump removal,radiotherapy and hormone tablets.Love and hugs to all x

Good luck all you brave girls out there. Surprising to me how quickly one adjusts and moves on. Only a couple of weeks since my totally unexpected diagnosis but this weekend I pruned my wardrobe of skimpy bras / strappy tops pre my mastectomy this week. This forum helps enormously in feeling supported and informed- many thanks everyone.

Hi Ladies,
Happily my MRI showed it was only in the left breast, hooray!!
Mass is large though (45mm) so having lymph node samples taken tomorrow then plan is to have mastectomy and reconstruction together. Am seeing the plastic surgeon on Friday.
Looks like treatment will be surgery followed by radiotherapy then hormone tablets. Not sure if I will have chemo think that depends on lymph node results and pathology of the breast after removal.
So for now a few things in place, some days I can forget for a bit and on others it’s there in my mind ALL the time.
I agree though when you have a plan it feels more manageable. I really have found it reassuring and helpful reading posts here and thank you all for caring.
Love and hugs to all
Alison xx

Flower, your right it is rubbish and my heart goes out to you and your family. I was diagnosed with lobular ,5cm, micromets in nodes,mx,chemo and rads which I ve just finished nearly a year on . I am having a sciatica type pain in my back which is being investigated next by mri…I am worried , even though all my previous scans where clear I know that lobular can lie undetected …can I ask how your mets were discovered? Hope and hugs to all you lobular ladies xxxxx

Hi ladies,
Dee hope all is well with you, I get the results of my node biopsy on Monday & then hoping to get on with treatment asap!! Looks like reconstruction will have to wait ? so think will be mastectomy within the next two weeks.
Flower my heart goes out to you, it’s such a crappy disease that we have no control of!!
Flossie, welcome to the lobular club, keep in touch and let us know how things are going.
Hugs to all, thinking of you xx

Just wanted to wish you all a good weekend, I’ve been up to london today to try & get into the Christmas spirit!! ?
I also visited a great shop for post surgery bra, lovely staff and now feel ready to face the 10th.
Am off to the clothes show tomorrow in Birmingham, trying to enjoy my last weekend with two breasts!!
Hugs to you all, keep ?xx

Sarah, please don’t feel alone. You’ll find many shoulders to lean on here, I’m finished with active treatment now and starting the tamoxifen journey…its taken almost a year from me but the support on this forum has been invaluable.
If you have any questions please ask as I’m only to happy to help you and all the other lobular ladies on this thread if I can xxxxx Linda xxx

Hi Jane, sorry you find yourself here but we will all try and answer your questions to the best of our knowledge. It is true that lobular breast cancer is harder to spot as it grows almost spider like rather than presenting as a lump. I found mine because my nipple started to point to the left slightly and my tumour ended up being 5cm ! I understand why you may want both breasts removed as lobular cancer can have a tendency to be bilateral…I have decided to have a second surgery to remove my right side following my first mx on the left now that I have finished treatment. You may find as I did that they like to do one at a time , this is because of recovery time and not compromising you in case of infection which could delay chemo if needed.
I have also read that 5 yr survival rates are slightly better for lobular patients but even out with ductal by the 10 yr maker, but as we all know this disease is unpredictable and these are just statistics. You mentioned about having a bilateral mx because you wouldn’t have lymph nodes to mop up the cells? The node clearance would be on your dx cancer side only so the other side would still have nodes present.
As for chemo , I too read about it not being as effective but my oncologist wasn’t aware of this. If you have positive lymph nodes then I would discuss it with your oncologist as it is likely to be offered and evidence of spread beyond the lymph nodes to other organs would be stage IV and therefore incurable…in my opinion throw everything at it before it gets that far, at least then you’ll know you’ve done your best…hope I haven’t rambled too much and been a little help to you …sending you hugs …Linda xx

Hi Sarah
Just wanted to say hello, I was diagnosed on 6th November, having a left mastectomy on Wednesday. As everyone says the waiting is the worst part, once you have a plan it becomes a bit easier. Hoping your MRI goes well and please keep in touch.
Alison xx

Hi Matty, Hope you don’t mind but I thought I’d share my experience of surgery and reconstruction not sure if it will help? I had mx and immediate implant reconstruction in March this year followed by chemo and rads. I was made aware that the implant could damage during rads but I went ahead anyway as I couldn’t face waking up with only one breast and the thought of just not being me, even if I could only achieve this in my bra (I’m lob sided without it) . My oncologist changed the radiation therapy so I had it at a reduced rate, 25 sessions rather than 15 + boosters in the hope that it would lessen the likely hood of damage.So far so good , I finished about a month ago , it was slightly firmer to begin with but has since softened. I am aware that it could still change in time but if it does then it can be replaced. It’s not an easy decision to make it is very personal to you …not sure if I’ve helped any?
Alison , I hope your surgery goes well, I wish you a speedy recovery. Good luck to all you ladies having scans or receiving results this week…hugs Linda xxx

Hi all, I have been diagnosed with a 5mm lobular cancer in my left breast, with another smaller one being benign. Following MRI I was due to be operated on this week but my Consultant says the scan showed another 2 areas that, although show on mammagram, weren’t biopsied by the clinic. He wasn’t happy with them & has asked for another biopsy to be done, but I am still waiting for an appointment. He assured me that they are very small & a mastectomy is not what I need, even if they are tested positive too. BUT yesterday I git a copy of his letter to my GP stating he needs the biopsy done to decide whether I need a mastectomy or conserving surgery!! All the way through I have been told how small the growth is, how removal could be done easily as lobular is easier to treat & that i may not even need radiotherapy, now I am possibly looking at major surgery. I can’t understand how he can tell me one thing & my GP something else? I am on Tamoxifen already but am also worried how this extra delay will affect the cancer. Has anyone else had such a small growth & ended up having a mastectomy please? Was feeling good but reading some of these posts about lobular has made me worry more now.

Hi Cazz29 and welcome to the BCC forums
Along with the support and shared experiences you have here our helpliners are on hand with further practical and emotional support for you so please feel free to call. Lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000

Here’s a link to the BCC lobular breast cancer information and our support services where you will find lots of support ideas:



Take care
Lucy BCC

Evening ladies,
Glad to hear things moving forward for some of you, my MRI tip would be to take a CD! I have to admit I silently sobbed for the first 5 minutes as it dawned on me that the Cancer was real.
I’m safely tucked up indoors following mastectomy yesterday, don’t feel half as bad as I thought I would and feel a great sense of relief that the mass is gone. I had drain taken out before I left hospital so other than some stiffness and discomfort am feeling pretty good.
Hugs to you all and good luck for those awaiting results,
Thinking of you all and sending hugs