Invasive lobular cancer

Hi there again.
Stage 2 is still classed as early stage breast cancer. it is still very treatable and most woman with stage 2b go on to live normal healthy lives. Believe me, I’ve researched and spoken to heaps of qualified people about this since my DX in jan and they same the same thing. Sounds like your man needs to improve bedside manner a bit. x

Thanks Flower - based on your research would you choose to have the other breast removed as well in my shoes?

Sascha, my multifocal ILC was stage 2b also, I chose not to have a prophylactic mx, although my oncologist would have supported this surgery. So far I have pushed for MRI at my yearly follow up as the primary was not seen on mammogram, although the high grade DCIS in the rest of the breast was. I am not knowledgeable on Spanish culture, do they tend to be very blunt when it comes to delivering sensitive news like a cancer dx? The outlook for early stage breast cancer is very good.

Blunt yes most definitely - there are no breast cancer nurses, I even had to sign the consent form there and then! I have to say I was not really expecting anything else, but when I asked about my other breast I was told it would be monitored by mammogram. But my current cancer was not found by that so it does not inspire me with confidence!! I do not know if I am Stage 2B for sure it may be higher but grade 3 and 90% is the element that worries me a lot more especially as I do not have an actual surgery date yet and I have already been waiting 2 months since symptoms first appeared when there was no lymph involvement at all.

Do I count as early stage then as it seems pretty advanced now and is in other tissues in my breast as well as nodes according to the numerous biopsies that were done?

Hi Sacha
I was diagnosed in September 2008 with Grade 3 Invasive Lobular BC with 10/21 Lymph node involvement. At my annual check with my consultant I have a breast MRI as well as Mammogram & Ultrasound on the “good” side.
I also see my oncologist every 6 month … so far so good:-)
Best wishes

Thank you Bethy, it all helps…

Do you mind if I ask what treatment you had and how old you are?

Hi Sascha

Any breast cancer that is confined to the breast and lymph nodes is classed as ‘early’ or ‘primary’.

I had invasive lobular, grade 3, ER++. It was big (5.5cm x 2.5cm) so it was an immediate mx (and immediate recon). Final results also showed it to be multi-focal, so the mx was def needed, and (surprisingly, given ultra sound results) all lymph nodes were clear - so with hindsight the full ANC wasn’t. However, because of the size of the ‘lump’ I would still be classed as stage 2.

My stats were given to me as: 10 year survival after just the mx 75%, with chemo and tamoxifen 88%. Risk of recurrance after just mx 50%, with chemo and tamoxifen 23%. I also had rads - which none of the predictor programmes seem to take into account.

I finished active treatment last Sept - have been back at work full time since November and I’m off to South Africa on hol next week.

Good luck.

Hi Sacha
I am now 48…was 44 at diagnosis. I had a Lumpectomy , full axillary node clearance, 6 x FEC Chemotherapy , followed by 30 X daily radiotherapy. 8/8 Hormone positive… Now been on Tamoxifen Since April 09.

Sascha, have a look at the grading&staging info from the Macmillan website
You won’t have the full picture until the pathology is available after your surgery. You don’t have to decide right now about the prophylactic mx on the other side, maybe you can consider that after your active treatment has finished. I am sorry you have so little support, and the cultural differences must be making this very hard on you. Hopefully the support from the helpline & forum will help. It is always worth remembering though that no two breast cancers are the same, even if the pathology looks similar.

Hi Sacha
Difficult to say what I would do in your shoes as I don’t have all path results. At moment, I intend to keep my lonesome boob. I’ve already had 2 mammos of this, and US and MRI scan. If they don’t give me an MRI scan on the NHS I am going to pay for one myself. Personally, I wouldn’t rely on mamos and US for ILC. My mammo did’t pick up my three tumors ( 3.1 cm, 1.9 cm and 1.7 cm). Only picked up calcifications. In fact, the US missed the 3.1 tumor altogether. Scary. x

Sorry not read this thread for aday or two,

What I meant re 1 in 8 etc is that in the UK 1 in 8 women will get breast cancer now, but once you have had invasive lobular BC the risk of getting it in the other breast is higher, about 17% chance I believe. They will do a prophylactic mastectomy of the other breast in some areas, often you have to see a psychologist first!

Some areas they will do screening MRIs, other areas they will not, they won’t in my area.

I am going to ask to have prophylactic MTX if I can.

I had Grade 2 , Stage 3 ER and PR strongly +, HER neg, no LN, was told 37% chance recurrence ( distant mets)in next 10yrs with just MTX- lobular spreads by blood; reduced by FEC-T by 15%, and with tamoxifen by another 11%.

Some interesting links for me to read above now, but now chemo over, just trying to start to get on with life again

Fi xx

Dear Ruth13

I’m interested to know why you are saying Stage 3 but that you had no LN? Do you mean lymph nodes?


Thanks for the explanation Fi. I thought that’s what you meant about 1 in 8. I interpet the statistics differently. Yes, lifetime risk for women in UK of getting breast cancer may be 1 in 8 but I really don’t think it follows that having had breast cancer in one breast there is still a 1 in 8 chance of getting it in the other breast.

Wow its a minefield isn´t it!

What does scare me about the other breast is that mammogram did not find my current tumours (and they are not small), it grew exceptionally fast, neither did two ultra sounds done by someone with a very good reputation for accuracy find it, only an MRI with contrast did. ILC is renowned for being difficult to detect so I don´t want to live with fear for ever…and I did not feel any lumps until my lymph nodes were inflamed, I just have a large tough dimpled very hard area.

So how can I ever be certain I will not get it there when the most likely place it will spread to is the other breast?

Interesting you say it spreads by blood as my biopsy (of last week) says there is no vascular infiltration from the breast tissue sampled but metastasis in axial node which was huge…so maybe this is good news?

I have had a huge rash in the base of my cleavage today which has gone across to my left breast - is this a sign of anything as its not normal for me?

Hi from me, another ILC.
I was diagnosed late 2010 with bilateral ILC, biggest on left was estimated around 2cm. Was recommended a bilateral Mx with immediate recon, but then had SNB which came back clear, so I decided I’d hang on to them for a while yet. Even after the Bilateral WLEs which found another 3mm one within the margin of the biggest which was 2.2cm.

Contrary to what most people would do I know, but I focused on the most recent research which mostly concludes that ILC has no worse, and can have better outcome than IDC as it responds well to hormone therapy. And most studies say that prognosis is based on biggest tumour, not total tumour load. Also liked Susan Love’s position that around 40% of removed breasts will have multifocal spots somewhere and the radiotherapy is good at cleaning these up, and I had rads on both sides. I didn’t have chemo as this wasn’t recommended - which I found a bit odd when you think.

But to give me a bit more peace of mind I also had the Oncotype DX test done, expensive, but I really wanted to be reassured that my situation wasn’t as serious as they’d have me believe. Results came back low risk of recurrence on both sides, so I do sleep at night.

Susan Love also says lobular can be result of ‘complicated hormonal history’ - I had endometriosis, on pill for years, had unsuccessful fertility treatment, then went on HRT at the first sign of a hot flush, so I like to think its all those hormones that did it, and now they’re being sucked out of me at a great rate by letrozole, I should be fine. What an optimist I am!

Maybe a bit of denial, but I feel OK with my decision. I do hope you all get to the peace of mind point.


The lifetime risk in the UK of getting breast cancer by the age of 90 is 1 in 8, however the risk relates to age, about 81% of BC occur in women over 50. Your risk of having a bc dx at age 39 is 1 in 219, at age 59 is 1 in 22. Once you had a dx of bc, your have an increased risk of a new primary in the other breast. This risk is higher for ILC than IDC. Depending on which material you read it varies up to 26%. BCC has a page on risk, explains the difference between relative and absolute risk, too.

OOps= miss print Jeannie meant stage 2 grade 2 no ln!!

Update - was back at the hospital today as oncologists now involved - I am Stage 3 locally advanced Invasive Lobular Cancer with cancer in lymph nodes (looking at this site I make myself 3A).

Mastectomy and LNC now booked for 2nd May…

Hi Sacha
Sorry you have to join us, but you know what, now you know what you are dealing with things do get easier. The op is doable, I was dreading it, but got through it. You need to know this.
I was in a total utter state at first. Couldn’t open curtains or make a cup of tea. I found trying to find out as much info about my condition helped me. Some ladies are opposite, but it is whatever suits you. You will get through this. Doesn’t feel like it for you at the moment, but you will. PM me if you need to x x

Thank you Flower. I do feel better knowing what it is - the weeks of not knowing but being told I definitely had cancer with significant tumoration were horrendous, a long month this April…amazing to think I was BIRADS2 and told it was benign from my mammogram just 5 weeks ago!

ILC certainly does lurk and hide and so it is nearly always more advanced when found. I feel better hearing from so many people on here with it with better odds than I was given (and which I have already discounted as incorrect) yet also being Stage 3…

The issue of chemo is a funny one…but then every cancer is unique…I would need to have very significant statistical improvement to go through that.

What worries me most about the surgery is my LNC and how it is afterwards…going by the biopsies my breast area will not have much pain, but underarm, wow, a horrible sicky type of pain. How long does it take to feel ok and be able to go out etc again? I don´t want to lose my physical fitness by lazing around…