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Stage 3 Invasive Lobular Cancer diagnosis

KezzaGKezzaG Member Posts: 13
edited October 2018 in Newly diagnosed
Hi everyone, this is my first time on here and I've been reading everyone's stories and comments.  What an amazing bunch of people that are here.  Having read so many stories has encouraged me to post my on story and questions that I hope some of you  may have an answer on or even just an opinion on.
I'd been having regular mammograms for a few years as my Mum had breast cancer a number of years ago.  She had an optional mastectomy and is still going strong today, 15 years later.
My last mammogram was in March this year and I was given the all clear and advised I didn't need to come back for 2 years. In early August whilst showering though I found a small lump in my breast.  I wasn't overly concerned but went to the doctor and he sent me for an US.  The results of the US showed a small lump but also a swollen lymph node.  I was then sent for biopsies and an MRI. The biopsies returned showing cancer in the lump and the lymph node. The MRI also showed a small lump. I was booked into the surgeon 3 days later and was advised that I could have a lumpectomy but was offered a mastectomy if I wanted.  I absolutely didn't want a mastectomy. One week later I had the surgery and was thinking that I was glad that was over and done with.  The removal of the lymph nodes and my right arm was definitely far more painful and difficult to manage than the actual lumpectomy.  But I was glad it was all over and done with.
5 days later I returned to the surgeon only to be told that 9 out of 21 lymph nodes removed were cancerous along with the surrounding tissue from the lump.  She advised I had Stage 3 Invasive Lobular cancer and had to have a mastectomy on my right breast and needed to consider having my left breast removed as well. Talk about totally shell shocked..... I couldn't understand or stop crying. 
After as much research that I could fit into a few days and many discussions with family and friends I opted to have both breasts removed. It's been the hardest thing to come to terms with.  I know everyone is different and some women make this choice willingly but it was one of the hardest things I've had to do for me personally.  I was very large busted (Double F) so my boobs were definitely a big part of me! 
When I returned to the surgeon after my double mastectomy she advised me that on examination of my right breast after the surgery that the cancer growth in total was over 12cm. I was absolutely blown away.  How could this be missed on all of my mammograms and the MRI???  I was told that the Lobular cancer grows like a spiderweb and is very hard to detect, where as Ductal cancers are more common and grow into lumps which are much more visible in scans and easier to feel.  The surgeon told me I was lucky at all to feel a lump myself as most women with this cancer don't feel anything.  I can't even explain what was going through my head at this time. 
My Oncologist has since advised my that 90% of breast cancer is Ductal and only 10% is Lobular. 
I've just undergone my second chemo treatment and have 14 to go followed by 6 weeks of radiation. 
I'm still shell shocked everyday and emotions are just all over the place.  I am truly blessed to have an amazing partner who has been more supportive than I could ever have imagined and the most beautiful family and friends that support me everyday.  
I'm really interested to hear from anyone that has been diagnosed with this same cancer or from anyone that has and advice or feedback on moving forward. I'm inspired by the stories I've read on here and the beautiful messages of support.
Thank you for taking the time to read my long winded story :smile:


  • SisterSister Adelaide Hills, SAMember Posts: 4,505
    Hi @KezzaG There are a few of us on here that have had ILC.  It's a particularly sneaky type of BC and often not detected until it has advanced.  You can read my story by clicking on my profile but it's a similar story to yours re: lumpectomy then mastectomy, etc.  I was fortunate in that I went for a screening mammogram and amazingly, a tiny, slightly abnormal feature was picked up. I had all of the diagnostic tests before the first surgery and the cancer showed as 2.5cm with no nodes involved.  Path report after first surgery came back with 4.5cm tumour with no clear margins and node involvement.  My initial diagnosis came on 5 December last year so my 12 month scan is coming up.  My surgeon didn't think I needed the other breast removed but that option is still there and I guess, things may or may not become clearer when I have the scan.  I have now finished active treatment - 6 months of AC-T chemo and 3 weeks of radiation - and I'm on Letrozole for 5-10 years.

    It does come as a complete shock but you've come to the right place for personal experiences and understanding.
  • kmakmkmakm MelbourneMember Posts: 7,870
    Oh Kezza, I'm so sorry that you've had to join us here. What a shocker of a time you've had of it with this bugger of a disease. Welcome, and I hope you find the forum as helpful and supportive as I have.

    There are quite a few lobular people here, @Sister, and @Eastmum come to mind. I was ductal, and found my tumour due to a regular mammogram. It was so deep in my large breast that I would have been in much more serious trouble by the time it made itself known.

    However, 17 months earlier my sister had died from breast cancer (I'm now raising her kids along with my own), and my mother had had it and survived, at my age. There's something going on in my family (not BRCA1 or 2, I'm currently waiting on test results for the CHEK2 gene mutation) so after a lumpectomy, a re-excision for margins (which discovered a previously unseen 4cm of DCIS), chemotherapy, and a lot of thought and discussion, I had a double mastectomy (which found more unseen DCIS) and DIEP reconstruction.

    It was one of the hardest decisions I've ever made as well. It was helped that I had a good amount of time to make it, and it has not been easy, but I have no regrets. I know it was the right thing for me.

    Humans are remarkably adaptable. We get used to stuff! BC is definitely something that challenges us and I'm still having trouble adjusting. But I trust I'll get there one day. It's great that you have a wonderful support group. If you feel you're getting 'stuck' with your emotions, get some counselling. It helped me a lot in the early days when I was devastated and furious.

    Deep breaths, and hang in there Kezza. Big hug, K xox
  • tigerbethtigerbeth MelbourneMember Posts: 533
    @KezzaG welcome to you , a place we all thought we'd never be !!
     I don't have the same diagnosis as you but can imagine your shock on discovering this shitty disease .
    Glad you have wonderful support 
    best wishes & lots of hugs 
  • Jane221Jane221 Central Coast, NSWMember Posts: 1,160
    edited October 2018
    Hi @KezzaG, I had 2 lobular tumours, neither of which were detectable as lumps but my nipple became inverted so that was my first clue something was wrong. Like you I had a lumpectomy but due to unclear margins needed a mastectomy. That's where I learnt the extent of the tumours - spread out over 9cm of breast. The spiderweb analogy is a good one and my breast surgeon said that lobular tumours were tricky to detect so that the mammogram and ultrasounds before my surgery didn't show anything like the extent of it - it was thought that maybe it was spread 2-3cm. The surgery also showed another "surprise" - a very small but aggressive HER2+ ductal tumour. That was 6 years ago now and so far all is going well. Best wishes to you xx
  • arpiearpie Mid North Coast, NSWMember Posts: 3,630
    edited October 2018
    Hi @KezzaG  - so sorry to see you here - but you are in the right spot for support from those who've gone before you.  WOW!  Your tumour was MASSIVE!!

    I was diagnosed with ILC in January this year and had my lumpectomy 2 weeks later - my GP found my lumps totally by accident the previous November (even my surgeon said she must have wonderful fingers - as it is one of the more difficult ones to detect by touch!)  My Mammogram just 6 months earlier had not picked it up & the MG and U/S shortly after detection also did not show it, even tho the GP indicated the precise location!  I had a biopsy 3 weeks later & ILC diagnosis was confirmed on Jan 5th.  

    I was lucky to have clear margins & no node involvement - so no chemo was required.  I had 4 weeks of radiation & now on Exemestane/AIs for 5 years.

    Having 'dense breast tissue' makes MGs almost 'non effective' in identifying ILC - as it is tucked in the lobules (I call them cabbages.)  They are 'already the lumpy bits' in the breast, hence manually detecting the lumps can be tricky.  Often, those with ILC are not detected until it is already Stage 3 or beyond  :(   

    At this point in time, Breast Screen Australia in most states does not inform women if they have dense breast tissue - and it is currently being hotly debated that we SHOULD be advised, as early detection with ILC is vital for a better long term outcome.   It might be worth mentioning to family members & friends to ask the BreastScreen people if they have Dense Breast Tissue at their next MG - as other  screening methods may be more reliable - Ultrasounds and/or MRI.  

    All the best with your ongoing treatment - the girls will be able to give you heaps of tips on chemo - I'd just recommend making sure you drink HEAPS OF WATER after every treatment to help flush it out (my husband had chemo after having most of his stomach removed some years back.)   Try to be as active as you can when you feel up to it - accept any help that is offered.  Do you have access to a good Breast Care Nurse?  Or a BC group within your area?  

    Throw up any questions that you may have re your treatment or any side effects you may have - the good thing is that not everyone gets extreme side effects. :) 

    Big hugs coming your way  xxx
  • primekprimek Broken HillMember Posts: 5,307
    Hi there and welcome. I didn't have ILC but IDC which wasn't visible in a mammogram 5 weeks before I found a lump. 
    I chose a bilateral from tbe beginning after consultation with a surgeon but I chose an immediate delayed reconstruction. Which means tissue expanders being put in ans partially inflated at time of surgery. They were then left until my treatment was finished. I wasn't expected to need radiotherapy and didn't require it but did require chemo.
    I went from an E cup to now around a C/D but no real fullness. It has been an adjustment to accept the loss of my breasts...not just their appearance but all that goes with it. I didn't really experience my loss until after chemo as prior that I was just in survival mode. But it did hit me later as I had to accept all the changes that happen from treatment. 
    It's okay to grieve over your loss. Don't feel embarassed about that and I think the hardest is coping with people's comments such as "they're just breasts" . No they are more. They fed my babies and were for me a huge part of my intimacy with my husband. They were part of my identity. It didn't matter what my weight was....I could wear somthing that showed off my assets and feel sexy. 

    You don't have to remain flat. Many women adjust to the change but a lot of woman do not. I met women at a survivorship meeting and breast reconstruction was a topic. A number didn't consider it until 10 years later. And some couldn't have reconstruction due to health issues. I particular remember one woman discussing it with me...10 years on...she stated...I will always miss my breasts. It was then, and only then I realised that yes...I always will too. I have accepted my loss. I have accepted my change but I will always miss that part of me and I'm not ashamed or feel shallow admitting that.

    Be aware we have a reconstruction group on this site with photo stories which you can join and look through the various types if reconstructions.

    Kath x
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,946
    @KezzaG welcome to the forum. I have invasive ductal and ended up having a right sided mastectomy. I have actually never really had too much of an issue with being 1/2 flat and my husband doesn’t care and has been an amazing support. I am still unsure about reconstruction but am going to look into it next year. 3 surgeries at the start of this year is enough for me. All the best xoxo
  • SisterSister Adelaide Hills, SAMember Posts: 4,505
    Welcome back @eastmum - glad you're through the chemo tunnel!
  • arpiearpie Mid North Coast, NSWMember Posts: 3,630
    WOW!  @Eastmum - so glad to see you are nearly thru your active treatment & you are going OK thru the rads - long may it continue! 

    DOUBLE WOW - I was amazed that the MRI didn't pick up your ILC (as well as you MG & US not picking it up!!)  Bugger - specially given the size of the tumour!!  I was sort of hoping that MRIs WOULD pick it up!  :(   There goes THAT theory!  :( 

    take care and all the best with your continuing treatment xxx
  • KezzaGKezzaG Member Posts: 13
    Eastmum said:
    Hi @KezzaG - thanks for tagging me @kmakm - I'm sorry it's taken me so long to respond!

    I also had regular mammograms and ultrasounds and even when I noticed a change in my left breast (described as 'architectural distortion'), the mammogram, ultrasound and MRI all gave me the all clear, putting it down to 'scar tissue' from the breast reduction that I had more than 30 years ago. It was only when my left nipple inverted several months later and I went back to have it checked again that the changes finally showed up on the scans - though NEVER on MRI - and I was booked in for biopsy.  It was only due to an incredibly astute radiographer, who noticed 'something suspicious' on my right breast when I went for that last ultrasound, that my right breast was biopsied also. At that point, there was never any question that there was something going on in the left side but I never had any visible changes to my right breast. Nothing ever showed up on any other scan on my right side and even at the biopsy it was incredibly difficulty for the radiographer to find the suspicious area on the right. 

    The biopsies diagnosed bilateral invasive lobular carcinoma - no lymph node involvement. I was told then, that it was probably breast cancer all along, even when it was put down to scar tissue. With lobular found in both sides I was booked in for a double mastectomy from the start. For me, this was not an issue. I always really loved my boobs but by that stage my left side looked so weird that I was only too happy for it be lopped off - and I just wanted the cancer gone from my body. All the staging scans that I had, indicated that my cancer hadn't metastasised. That was the biggest relief for me, especially knowing that I'd probably had the breast cancer for well over a year. Having said that though, the diagnosis was in January and with my Drs blessing I delayed surgery until April as having it in the school holidays was a better option for me.

    My surgeon told me that during the operation, he would do a sentinel node biopsy on both sides and if there was any sign of cancer in even one sentinal node, he would do a full axillary clearance on that side. As it turned out, I ended up with a full clearance on my left side. 

    Given that if there was node involvement discovered during surgery and therefore there was always a possibility that I would need radiation, my plastic surgeon was not keen to do an immediate reconstruction at the time of mastectomy. Radiation plays a huge role in the success of reconstruction. I was therefore given air expanders during surgery, and will have a reconstruction sometime during 2019.

    It really is the biggest shock when you're told that your cancer is a particular size, only to find out that it's much bigger. The 16.8 cms of tumour in my right breast was a huge surprise to everyone - even my breast surgeon - and that was in the breast that hadn't shown any sign of cancer. All I could imaging was a 30cm ruler and thinking - wow, that's more than half a ruler! 

    Fast forward to October - I've now finished AC-T chemo and have started radiation. Even though my body was officially cancer free after surgery, with a few nodes coming up positive, my cancer was also stage 3. There is discussion over whether chemo actually has any effect on lobular cancer, but my medical oncologist recommended it and really, all I want to do is to throw absolutely everything at this disease to minimise a recurrence (no guarantees, I know).

    You didn't mention which chemo you're doing? I'm guessing it's 4 x AC (either two or three weeks apart) and then 12 x weekly taxol? I did have a range of side effects - from a chronic dry mouth, nose bleeds, fatigue etc but I was incredibly fortunate throughout chemo and was able to function normally and didn't need to take any time off work. You'll find a ton of different chemo experiences on this forum and each and every one of them is 100% normal so it's really important to know that whatever you experience is absolutely OK. If you find that you need to stay in bed for a few days then listen to your body and do just that. Eat and drink what you crave, rest when you need to, exercise if you can - just do whatever gets you through. It's such an individual journey for everyone and never feel the pressure to be 'amazing'. Whatever you can do is fine, and if you're feeling crappy, that's fine too. You have to give yourself permission to feel crap sometimes :)

    It was really confronting for me to lose my hair - and then my eyelashes and most of my eyebrows - but they will all grow back. Actually, my head is already starting to grow 'peach fuzz' just three weeks after my last chemo. I choose to wear a wig because that's what gives me self confidence, and there are many people at work who don't even know I had cancer. 

    I'm 2 days into my 6 weeks of radiation and so far, it's absolutely fine although I know it's very very early days. My cancer was really close to the skin margin so my radiation oncologist has said that she 'wants to see a skin reaction' - Yay! (LOL). 

    My cancer was 100% ER and PR positive so I'll be on years of hormone therapy after radiation. If it truly further reduces my chances of a recurrence I'll do whatever I need to. 

    Emotions are like a roller coaster. I'm a really pragmatic person so from the outset I've been like 'OK this is what's happened, what do I have to do' - and I guess I haven't really given myself a chance to process it all emotionally yet. I find though that it gets to me when I'm least expecting it. I'll suddenly have a weeping or teary moment for seemingly no reason at all. I consider myself one of the luckiest people on earth to have an excellent prognosis when I know that so many people don't. I feel so fortunate to have something treatable (even curable I guess), with no apparent metastasis; to have decades of medical research and tens of thousands of warrior women that have paved the way, and to live in a country where we have the highest rate of breast cancer survival in the world. 

    Like you, I am blessed with a wonderfully supportive family and amazing friends, and I also have an incredibly supportive employer and easy access to medical resources. I don't take ANY of that for granted because I know that there are so many men and women (many of them on this forum) who do not have that.  

    This forum has been the most incredible support for me. I've taken a bit of a break from being active on here for a while as I've had so much going on (and after a full day of work and coming home to make dinner etc for the fam, I've been collapsing into bed and fast asleep much earlier than I used to!) but I'm looking forward to giving back a lot more soon, as it's been so wonderful for me. There's always someone on here night and day to chat to, or if you just want to download about how you're feeling. 

    Wishing you only everything of the best with your treatment going forward. There is always a light at the end of the tunnel, just keep moving towards it and you'll see that step by step you'll get through.

    Lots of love,
    Yvette xx

    Hi Yvette

    I just wanted to thank you so much for responding to my message. Everything you said has made an impact on me and has resonated with me in some way.  You seem so positive and I'm hoping to get to that point to.  At the moment I'm really struggling with my emotions and every day seems like a roller coaster ride. I'm going to get there though and will continue to fight.

    Thank you xx 
  • kmakmkmakm MelbourneMember Posts: 7,870
    Hang in there @KezzaG. One foot in front of other. Big hug, K xox
  • kmakmkmakm MelbourneMember Posts: 7,870
    Many many people express that @Skinnylatte, that they're more worried about losing their hair than anything else! It's a pretty normal response so don't worry.

    Have you been offered a cold cap? We have several members here who've had success with it, and kept a lot of their hair. It didn't work for me though, it's not a 100% success rate.

    You do adjust to having no hair (showers are a revelation!). I wasn't especially bothered. The thing that bugged me the most was that I now looked sick. People could tell that I was undergoing cancer treatment, my private business was public. Again, you get used to it.

    Of course you don't need to look bald if you don't want to. Wigs are freely available to borrow, hire or buy. Some work through chemo, wear a wig, and colleagues never know.

    And your hair grows back. Many of us find we love and totally rock a pixie cut. I'm keeping mine!

    I had IDC so I won't speak to your ILC except to say that for many of us, treatment plans changed once the histopathology came back from the initial surgery. My tumour doubled in size, and a large area  of previously invisible Grade 3 DCIS showed up after my re-excision for margins.

    Hang in there lovely. It sucks but it will all be doable. Take some deep breaths and take it all one day at a time. K xox
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