Understanding Lobular Breast Cancer: Detection, Treatment, and Research Advances

have you got lobular breast cancer are you struggling to get information about it do you want to know if it's treated

differently is it more likely to come back in the future and why are there so few trials for it if that's you you're

not alone I had lobular breast cancer and I got frustrated at how little information there is thankfully things

have changed and there are now dedicated support and research groups just for us and I'll put the links in the video

notes today I'm going to tell you everything there is to know about lobular cancer what it is how it's

detected and how it's treated you'll learn the unusual symptoms of lob recurrence that you need to be wary of

and finally I'll share the latest research and what the fature holds before I start I thought I'd tell you a

little bit about my own lobular cancer Journey feel free to skip ahead to the next chapter if you already know this

now I was diagnosed with stage three mixed ductal and lobular cancer back in 2015 when I was 40 it wasn't seen on a

mamogram only on the ultrasound and the MRI I had chemo first and my final MRI showed that my cancer had disappeared

yay except it hadn't only the ductal bit had gone and my myectomy showed there was still 13 cm of lobular cancer left

in my breast and that wasn't seen on the MRI it was ear positive and her two negative 3 years later I had a local

Regional recurrence on my chest wall and 7even months ago I had a second local recurrence above my myectomy scar now I

should warn you that you will hear me say a lot of breast cancer specific words that may be new to you these are

all words that I've explained before in some of my other videos I'll highlight the videos as we go along and I'll list

them all in the notes so you can go and watch them later so what is lobular breast cancer well breast cancers

develop from cells in the breasts and 80% of breast cancers come from the cells align the ducts that carry milk

through the breast to the nipple they're called ductal cancer or cancers of no special type lobular cancers come from

the glandular tissue of the brain breast that's the pink bit that you can see that's the bit of the breast that makes

the milk if you do get pregnant and they make up 10 to 15% of all cancers they're more common in menopausal women and over

90% of lobular cancers are grade two slow growing ER positive and her2 negative and you can find out more about

those terms in this video lobular cancers also tend to be larger than ductal cancers when they're diagnosed

often over 5 cm in size they're also more likely to be multifocal or multicentric a multifocal cancer means

there's more than one cancer in one area of your breast like a cluster of cancers or within 5 cm a multicentric cancer

means there are several cancers in different areas of your breast and this nearly always means you'll need to have

a myectomy to remove them lobular cancers are also more likely to be found in both breasts at the same time called

bilateral breast cancer and this is more common in younger women there's also another rare type of lobular breast

cancer called pleomorphic lobular breast cancer and there's not a lot of information about it they tend to be

grade three faster growing and are much more likely to spread to the lymph nodes but for the rest of this video I'm just

going to talk about normal lobular cancer so why is it so hard to find see lobular cancers are sneaky and they grow

in a single file like a bed sheet instead of forming a clump and that's because they don't have a molecule

called e cateran on their cell surface eerin is like an anchoring protein it makes cells sticky all ductal cancer

cells have it and that's why they grow together in clumps that are easy to see on a mamogram or easy for you to feel

but because the lobular cancers spread out in single file they are much harder to see on a mamogram or for you to

notice a lump eventually the sheets of cells will merge forming a mass but by the time this happens the cancer has

often spread to the lymph nodes so how are they diagnosed well lular cancers be hard to find when you check your breasts

I'm a breast surgeon and I didn't know I had a 13 cm cancer in my breast and I've got expert hands I missed it because the

lobular cancer had formed a web through the hole of my breast instead of a palpable lump I only saw the ductal bit

that had formed a lump lobular cancers are more likely to present with a skin dimpling a thicker fuller breast or your

nipple being pulled in and that's why it's still important that you check your breasts regularly so you can pick up

these signs we do still still use mammograms as the first scan because we don't know what kind of cancer you have

until we do a biopsy now mammograms do pick up almost 2/3 of all lobular cancers however a third of all lobular

cancers are only seen on one View Ultrasound scans will find around 90% of all lular cancers but they still miss

one in 10 of them now magnetic resonance imaging or MRI is normally done in anyone with a lobular cancer that isn't

easily seen on a mamogram m eyes will pick up over 95% of all lobular cancers but they can still miss some which is

what happened to me these are called occult cancers and at the moment there's no other way of screening them MRI scans

are also done because they'll often show that a lobular cancer is bigger than first thought and it's important to know

this because it helps your surgeon plan the right operation how is lobular cancer treated

well the principles of treatment are the same as any other breast cancer surgery to remove the cancer with a clear margin

of normal tissue followed by radiotherapy if needed and chemotherapy if needed followed by hormonal therapy

when it comes to surgery the outcome from a lumpectomy and a myectomy are the same providing all the cancer has been

removed but because lobular cancers tend to be large more women will end up having a myectomy compared to those with

ductal cancer what about chemotherapy so chemotherapy doesn't work very well for

most lobular Cancers and that's because they are so slow growing now if you have a very large cancer with involved lymph

nodes you might still be off at chemotherapy but most of you will be started on hormonal therapy instead and

you may be given targeted therapy like a cdk inhibitor and you can see this video to find out more there is hope that

molecular tests like oncotype and prosignia will be able to help your oncologists work out whether you really

need chemotherapy but at the moment there isn't a lot of information and that's because most trials don't

separate breast cancers by tumor type ductal and lobular endocrine therapy is the main

treatment that you have with an ER positive lobular breast cancer we want to lower the levels of Eid in your blood

to reduce the risk of lobular cancer coming back now there are trials looking at giving it to you before surgery to

try and shrink the cancer to help you avoid ostectomy there's not much evidence to

show whether one drug is better than another but there is some data hinting that LOL has a greater effect than

tamoxifen targeted therapy as I said earlier you may be given one of the cdk Inhibitors palicy which is what I'm on

aacy or ribosy together with a hormone blocker and this is to further reduce the risk of recurrence if you have a

large tumor now the pelops trial has just finished recruiting and that's looking at the benefit of giving palpac

cycp and endocrine therapy before surgery in patients with ductal and lobular cancer the results are expected

in 20131 does lobular cancer have a worse survival rate at the moment there is

isn't a lot of evidence to say one way or the other and your survival rate depends on lots of things and it means

How likely you are to still be alive 5 or 10 years after treatment now we work it out using a computer algorithm on

websites such as NHS predict and adant online and it takes into account your tumor size and grade are your lymph

nodes involved is your cancer ER or herty positive or negative how old you are however it doesn't ask whether your

cancer was ductal or lobular which is really annoying but that's because the vast majority of Trials over the years

have looked at how successful breast cancer treatment is by size and grade and receptors they didn't look at the

difference between ductal and lobular Cancers and that's why there isn't a lot of information to help the few studies

that there are have shown that lobular cancers have a better outcome in the first five years compared to ductal

cancers with fewer recurrences but as you get older and you get Beyond 10 years from your treatment it's the

lobular cancers that are more likely to come back why don't you have an MRI as followup

after lobular breast cancer this is so hard to explain and I used to struggle to get my patients to understand it and

then when I got lobular cancer I became a confused patient we do breast scans for the first 5 years after surgery for

two reasons one is to look for a recurrence in the breast assuming you had a lumpectomy because if you've had a

myectomy then there's no tissue left to scan the other is to look for a breast cancer in your Healthy breast

having breast cancer once means you are more likely to have it again compared to a healthy woman but you need to remember

things like chemotherapy and tamoxifen electrol reduce the risk of that happening there is also no guarantee

that if you had a lobular cancer a new cancer in your breast would be lobular as well it's just as easily to be a

ductal cancer which is seen on a mamogram so we start with a mamogram as they are useful in picking up changes

and if your cancer wasn't seen on a mamogram in the beginning your team may consider doing MRIs as well at the

moment there's no National policy for lobular followup but if you are worried you've got dense breasts your cancer was

missed talk to your team and ask them about regular MRI followup now what happens when lobular

cancer comes back at stage four disease now this might be scary to hear but it's really important to know because it can

come back 10 or even 20 years in the future you need to know what to look out for and yet again lobula can be sneaky

although it does go to the common sites such as your liver and Bones it can also spread to your abdominal cavity and the

cells invading the Linings of your gastrointestinal and gynecological organs can be affected such as your

stomach your ovaries your bow and your bladder and because the cells grow in sheets they can wrap around the organs

like a loose knot that slowly tightens and this means that you may have different symptoms of metastatic disease

such as indigestion and heart bur constipation or difficulty having a Wei if you do have an unusual symptom and

you've had it for more than three or four weeks and you can't explain it make sure you see your family doctor now they

might not remember that lobular cancer can spread to different sites so you might need to remind

them a lobular metastases hard to detect you guessed it lobular cancer is the gift that keeps on giving not only is

the primary cancer hard to spot but the metastases are as well and again that's because they're growing sheets and not a

lump now in 200 22 a survey at a big breast cancer conference in the states asked 271 women with lobular Mets how

they were diagnosed 48% said it was unexpected or an incidental finding during another medical procedure or scan

a third said at least one type of Imaging such as ultrasound or AC C failed to pick up one of their

metastatic sites we desperately need more research to help identify metastatic disease and liquid biopsies

might be just around the corner so what does the future look like for LOB cancer well there are several really exciting

areas of research at the moment and the first is immunotherapy lobular breast cancers

appeared to be immunologically hot meaning that your immune system is more likely to recognize a lobular cancer we

know there are also more active immune cells compared to ductal cancers and the gelato trial was the first immunotherapy

study for patients with lobular cancer it looked at using a drug called Tech Centric which is a pdl1 inhibitor

together with a chemotherapy drug called caroplast for patients with metastatic disease now

sadly it was stopped early because it didn't show a benefit and the side effects weren't great but other trials

will follow we also know that lobular cancers can have different genetic mutations

compared to ductal cancers for example scientists have discovered that 60% of lobular cancers

have a mutation in the pik3ca gene which is what I have and we think this causes endocrine resistance meaning that drugs

like tamoxifen stop working the solar 1 phase 3 trial tested a pi3k inhibitor called alpelisib in patients with

metastatic lobular disease and it showed it increased the length of time that patients had staple disease

for we also know that lobular cancers have a mutation in the cdh1 Gene and it's this mutation that stops the cells

producing eerin the Rolo trial is testing a drug called choton now this targets A protein that lobular cancer

cells rely on instead of eerin and we're hoping this will give us more information about how to treat lobular

cancer in the future if you found this video useful hit the Subscribe button so you don't miss my next one I'm Dr lizza

Raiden and thanks for watching I'll see you next time