Invasive Lobular Cancer (ILC)

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  • kmakm
    kmakm Member Posts: 7,974 ✭
    Good luck getting BreastScreen to listen to anything their 'consumers' have to say. Ask @arpie and @JJ70. It's like banging your head against a brick wall...
  • berry
    berry Member Posts: 71 ✭
    the more the women in the community know, there could be public out rage forcing the government/BSA into action. But lets wait until all fundraising activities are over. Lets say mount a campaign in June.
  • berry
    berry Member Posts: 71 ✭
    I was called by a representative of Breast Screen Australia who guarantees that BSA has ordered 3d mammogram machines  from Siemens and  will be in use in a couple of years,starting in Victoria. What has taken them so long? Why haven't our esteemed oncology doctors not pressured Breast Screen Australia into getting 3d mammograms earlier? These doctors are the frontline observers of the failings of Breast Screen Australia's failed mammogram screening program for 10-15% of women.
  • kmakm
    kmakm Member Posts: 7,974 ✭
    Even the 3D machines aren't perfect. It failed to detect considerable areas of DCIS in my breast which would have made a big difference to my breast cancer experience. As in, one less operation considerably less anxiety and stress. They are the best we have but not perfect.
  • berry
    berry Member Posts: 71 ✭
    Sorry to hear that. 
  • arpie
    arpie Member Posts: 8,200 ✭
    @berry Good on you for contacting them  ...  You can make that an additional 20% of women failed by Breastscreen NSW - so 30-35% - as they actively discourage 40-49 year old women from getting free mammograms (altho perfectly entitled to it!)    They tell them to see their GP instead.

    NONE of their advertising includes 40-49 or 74+!   :(  ALL are able to access free mammograms.

    Did BSA say the mammograms in the BUSES are going to be 3D as well?    Whilst much better than the 2D - they are still not good enough for picking up all/most ILC - and yet they refuse to advise their clients who have dense breast tissue that they may need alternate scanning (US or other.)  They do in WA!! 
  • berry
    berry Member Posts: 71 ✭
    She only mentioned that they will be rolled out in victoria in a couple of years. With more pressure on them- BSA maybe country folk who use the buses will benefit
  • berry
    berry Member Posts: 71 ✭
    It has just occurred to me that  iBC women are paying the ultimate price with BSA using 2d mammograms for the greater problem of detecting early signs of breast cancer for the majority. I feel a martyr for this common good. It ain't my common good.

  • Brenda5
    Brenda5 Member Posts: 2,423 ✭
    Just to be different, I had stage 2 combination ILC and IDC with one node positive. It was also ER and weakly PR positive.
  • berry
    berry Member Posts: 71 ✭
    thank is really good Brenda5, that both cancers were detected early. 
  • Flaneuse
    Flaneuse Member Posts: 899 ✭
    My ILC wasn't picked up by 3D mammogram - only by a long and exhaustive ultrasound. The surgeon recommended chemo before surgery but the oncologist said it would be a waste of time for a large ILC. So I refused. My ILC was 12 cm. I had chemo after surgery.
  • berry
    berry Member Posts: 71 ✭
    Looks like new diagnostic  tools are needed.  IIts a single cancer cell which lacks a binding protein hence no lump. I would be interested in examining statistics on the % of ILC a 3d mammogram picks up, it would have to be better than 10%. With little symptoms , its good your doctor had foresight to order an ultra sound. My cancerous stream was 5cm which was a good part of half the breast. 
  • Cashbrown
    Cashbrown Member Posts: 6 ✭
    Hi- I had surgery for what was picked up in mammograms, MRI, ultrasounds and pre op biopsies for stage 1 Lobular 1.2cm in left and DCIS 1cm in right breasts.
    Post op biopsy revealed left turned out to be 2.2cm grade 2b  and had spread to 1 lymph node - they removed 8 nodes.

    right turned out to to be 2.5 cm grade 2a and after a second excision fi ding lymph nodes clear, the chemo question came up. This was a big surprise for me.

    my onc said that they would def recommend it for me - but to be sure, I paid $3000 for and Endo Predict test.

    was a test I am pleased to say I failed so no chemo -

    just AI (anastrizole) as I am Post menopause and am still waiting for a radiation plan as a tennis ball sized seroma is slowing things down.

    waiting and waiting and delay after delay is really shit.

    it seems the chemo advantage for stage 2 lobular is lower than for ductal, but a genetic test is possibly best indication.

    its just sad we have to pay for it! 

    Hope this helps
    best
    Cash 
  • berry
    berry Member Posts: 71 ✭
    edited July 2019
    Thanks Cashbrown , I had 13 lymph nodes removed and fear it has metastasized to my hip which is common for ILC.  I am thinking of changing fro the Peter Mac Cancer where quality control is poor to Olivia Newton John Cancer Centre where hopefully they are switched onto ILC. I am on Anastrizole. kindly B
  • Cashbrown
    Cashbrown Member Posts: 6 ✭
    Gosh - @berry what a ride. I am scared now - am being treated at Monash for most things but Peter MAC for radiation. 
    Still haven’t started rads and it’s been I seem to be losing a bit of faith in the system. How are you finding anastrizole? I am sad about your hip :( must be dreadful.
    thank you for posting about lobular- it’s slim pickings out there - as is anything about bilateral synchronous 

    best Cash 

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