Invasive Lobular Cancer (ILC)

Dear Kezzzag
broken trust and faith in medical practice is akin to traumatic stress
BCNA needs to raise awareness of early detection deficiencies and advocate for better screening on our behalf ! Enough is enough! 
I hope the following is not scarey but  it helped me sufficiently to think of writing to the USA. Also,it informs your discussion with your 
oncologist, There is a test called OncoTypeDX test which can give an idea of recurrence and help with treatment decisions
 I know of a couple of woman who had their bloods sent to the USA for testing at very high cost..about $3000.
But the website which a sister put on this thread and for which I’m so grateful is www.lobularbreastcancer.org in the USA.
A most informing and encouraging article I found today, and follows
on from this group is found at fredhutch.org and the article: 
‘Lobular Breast Cancer comes into the Spotlight’.  from the USA. 
I hope you’ve got great support. Someone you can rage with! 
Thats.. positive enough.. as a driving force To lead you in new directions. Perhaps we could call for a Royal Commission into Breast Cancer Standards in Australia..(oops! Perhaps a bit radicalL ) but
so many of us have had similiar experiences . 
After all that.. go gently.. I find rage comes in waves! It drives me
to find better care! All the best.. we are together... xx 

Hi everyone, I've come into this thread a little late. I've just been through and read all of the comments so my apologies if what I'm saying is a bit out of sync with the where the conversation is at now.
I've had regular mammograms since I was 40 (now 48) and everything always came back clear.  In 2017 I was called back after a mammogram and underwent a second mammogram and examination which was inconclusive. There was discussion of me having a biopsy but then that was deemed unnecessary.  Instead I was sent for a 3D mammogram.  The results were all clear. In March 2018 I had another mammogram and was sent a letter from BS advising that it was all clear and I did not need to come back for testing for 2 years.  i was pretty darned happy about that!
In August 2018 (5 months later!) I found a small lump in my right breast.  I wasn't at all concerned and didn't rush to the doctor. When I finally did go (and explained the above circumstances) he sent me for an ultrasound.  That resulted in then being sent for an MRI and biopsy.  The result was a 2cm lump (as shown on the MRI) and swollen lymph nodes, that my surgeon advised could all be removed with a lumpectomy. 
Fast forward after the lumpectomy (with me going about my business thinking all was well in the world) and I was called back to the surgeon to be told that I had ILC, 19 lymph nodes were removed, of which 11 were cancerous. Within days I underwent a double mastectomy, to which I was then advised that my tumor was 13cm in size and I had stage 3 ILC.
Words can't explain the shock and devastation (as you ladies would all relate to). 
I have since undergo chemo and have 2 rads to go out of 25.  Thursday will be a day to celebrate.
But to be honest..... I'm terrified.  Treatment will be finished but I have no way of knowing if this disease will be gone.  I'm advised by my Onc that there is no further testing other than bloods. I feel lost, out of my depth, emotional and angry.
All my family and friends mean so well and they're constantly reminding me of how many rads I've got to go and how it will all be over soon but no-one seems to get it...... will it really be over soon? Stage 3 ILC!, will it come back? how soon? what are my chances?  I don't expect any answers to those questions, but I just wish they could understand where I'm coming from.  But if I say anything about how I'm feeling then I'm told to stay positive. Sometimes easier said then done.
I wish someone had told me about this particular type of cancer and how difficult it was to detect.  I put all of my trust in BS and never thought for a minute that their testing was anything but accurate.
Thank you to everyone that has posted about this. I've found very little information about ILC so a lot of what has been said here has been very insightful. Thank you all xx 

Dear Sister, encouraging and consoling. Thanks for the info.
Im also in Adelaide and have had a shocking time in the oublic
sector. Don’t know if you can say who your team is but sounds 
progressive and encouraging. 

Be aware there are differences within ILC.  For me, mine was picked up on a general screening mammo as I had no symptoms.  It turned out to be pleomorphic which, I have been told, means that it grows pretty damn fast and may have only been there for 1-2 years.  As it was ILC, it was incredibly hard to see and my surgeon was amazed that the irregularity was spotted. I booked the screen because I was ticking things off.  If I had gone a few months earlier or a few months later, the story may have been quite different.  It's not so many years ago that no-one realised that ILC was a distinct BC.  I think it's important to push for better recognition and, therefore treatment.  It's also important to realise that these things are only becoming known as we go along.  According to my onc, there is going to be an explosion of knowledge in the BC world within the next 5 years to the point that they will be looking at current treatments as "stone age" - there is that much happening and he has already seen it with lung cancer and melanoma.  I am sorry for those who don't feel confidence in their medical team and I totally agree that if you don't, you should find someone else.  I do trust mine but I know they are limited by what is currently known and available.

Here here! 

I loathe being 'handled' by my doctors. I'm a grown up, it's my body. Just bloody give me all the information.  :#

Correction.. The Expert Radiologist in NSW .. Sydney is Dr Mary 
Rickard.. not Richard

Thanks all.. so proactive consoling not to be Alone in these events.. 
in NSW, I’ve read an expert radiologist is Dr Mary Richard. I’m not sure if she started the public mammogram screening. I’ve read she now advocates strongly re dense breast tissue even suggesting 
that dense breasts are higher risk than genetic inheritance. 
Could be, as I I was told by a geneticist that 80% of us belong to an unknown category. I’m in this group. The other 20 % are BRACA 1 &2 group. There are added genetic profiles like CHEK and others
that are part of this group.. But, for we glorious common flowers..
there is little known. The studies into epigenetics and DNA methylation hold hope for us being done thru Peter Mac. Also, 
liquid Biopsy.. a blood test for early detection of circulating cancer cells not yet available.. Ratshit that we have to wait for the scientists
for so long! The other interesting area is genomics. Anyone having a tumour removed should now request genomic testing along with 
Histology on the tumour. If genomic testing had been available on my first tumour and the second (then available but not offered), 
a more accurate assessment of the two tumours would have occurred to determine if they were related. In second cancers
our guidelines seem outdated  and it’s near impossible to get a straight conversation from the Oncs.. one said to me.. ‘ you don’t 
want everyone to be afraid! What price Truth? I personally can face truth.. we need strong advocacy to challenge and transform .
Many more of our sisters may be prevented from progressing to 
advanced stages.. if we unbetweeners have best practice guidelines 
perhaps more akin to USA or UK.. 
I’m a retired common little flower with a compulsion to get better care 
than my grandmother and my mother... All strength to us all to
progress prevention. 

I have got copies of my mammograms for the past 8 years(4 mammograms) but I am going to take them for an independent opinion. Lobular cancer is supposed to be in situ and therefore harmless for years before it escapes into the ducts. My mammograms never picked it up even though they have picked up cysts. Very odd.

EAA  I am appalled by the lack of information and diagnostic tools for ILC. Towards the end of chem I asked the Peter Mac doctor what the diagnostic follow ups were and he just shrugged his shoulders and said in about six months you will have a mammogram. I have a persistent sore hip, couldn't get an appointment with a Peter Mac doctor so I have gone to my GP to get a referral for a CT scan. Neither of us know if that's the best detection tool but at least it is a start. I am sure the GP and I could nut out my predicament with some guidance from the Dr's at Peter Mac. But I am totally livered with Breast Screen Australia and Peter Mac and feel really strongly that there needs to be change. Even this website could do more for ILC, information for starters, I have also asked them to create a forum especially for ILC. Don't think that's going to happen either. The most important issue for all cancers is has it spread to the lymph nodes and be alert to any unusual persistent pain. Spreading to the bones is very, very typical for ILC. good luck EAA and hopefully we can force change.