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Mets progression testing

MimandMimand Lake CathieMember Posts: 41
edited February 20 in Social Groups
Hello brave warriors I hope you are all travelling well and keeping strong,
I am curious if anyone has the same concerns as myself with how ILC progression is being monitored.
I just feel that my 3 monthly bloods are not enough . 
After being diagnosed on Feb 15th 2018 ( just had 2 year anniversary) yay me !
I had PET scans, MRI to chest and CT. It never leaves my head that the Mets found in my tubes and ovaries , taken out after diagnosis, had ILC microcells , and were not detected in any of these scans ?
Has anyone else out there with ILC  have there Mets been missed ? 
I still struggle with the fact that there has never been anything found in the breast even after the MRI , my Mets was discovered in my GI tract after some eating issues, and I had a colonoscopy/ endoscopy. The Gastroenterologist gave me this horrible news.
I am doing ok and do feel grateful that the treatment is bearable , but the sneaky way this sub type presents is concerning .
I hope 2020 brings more hope and good news to us all x


  • arpiearpie Mid North Coast, NSWMember Posts: 4,185
    edited March 6
    Sorry for the delayed answer, @Mimand  -  I keep forgetting to check in on the ILC group - and we don't get notified when posts are made  :(

    Well done on 'doing OK' .... keep it up!!  Yes, testing & treatments are advancing all the time & sooner than later, they WILL be able to find out who gets Mets & why!

    I don't have Mets (that I am aware of) but am very mindful that those with ILC can be more susceptible to getting Mets - and I am also mindful of any new aches & pains that may present themselves.  If they last longer than a month - it is worth getting checked out.  I had a weird foot issue a while back late last year - a leg/foot issue, with numbness and tingling - almost like ‘dropsy’!  The foot kept hitting the floor differently from the other one, making me stumble.  My left arm/hand was similar.  I didn’t have chemo so it can’t have been neuropathy ... but I have had bad side effects from the hormone tablets.  Onto my 3rd brand of tablets now.  Only Tamoxifen left to try after this one.  And I also have bad arthritis too .... so doomed!   I had a CT scan & all was found to be 'ok' and shortly after the symptoms 'stopped' tho there is some residual numbness that I will monitor!  

    Sadly, there isn't any definitive test (that I am aware of) that will show microscopic mets ..... often (like you) it is found 'by accident' or presents itself as an aching hip or leg - only to find that it has gone to the bone or elsewhere.  I have 2 friends diagnosed with BC bone mets just in the last 6 months.  They are similar in age to me (late 60s) and are of the understanding that as they are older, their mets are a slower growing one & is being treated more as a 'chronic condition' (similar to some men with prostate) who will die 'WITH' the disease, not necessarily FROM IT.  (See document below)

    A lot of it is a mental battle as much as physical - if mentally you can come to accept your diagnosis - and start 'living life' again with some sort of joy - rather than fearing the unknown - then it is a 'win'.

    Take care & I hope your treatment continues to be bearable!

  • EAAEAA Member Posts: 88
    Hi Mimand, Im EAA... Thanks for your post of Feb 19th. I hope the year is unfolding in a good way for you. I am encouraged with your post that shows how different and
    'novel' ILC reveals itself....3 months ago i discovered my submandibulary gland in my neck was swollen. I had no signs of any infection. An ULtrasound is negative.
    I see the ONcologist next month. Im tired of trying to get better preventative care..By choice I'm onto my fourth oncologist... .i thought 'i feel well'' i wont bother much..
    then, remembered that's how it was with my first and second lump.... i feel reluctant  but compelled to discuss it with her and ask for further scanning like CT or MRI.
    Id like PET but she wont come at it unless this lump is metastatic. Your experience has encouraged me to find my 'boldness' again,,,Thanks so much for sharing..
    We have one life to live with this disease.. Thanks for sharing the way of the brave and the bold...Peace filled strength be yours.

  • MimandMimand Lake CathieMember Posts: 41
    I am sorry I have not responded to your post . I flutter in and out of the forum .
    How are you going , did you get answers ?
    I am searching for an Breast Cancer Oncologist that has interest in ILC , I have booked in to see a lady in Sydney just to get a second opinion , I feel I need this.
    i hope you are travelling well , I would love to hear how you went.
    Strength and love 🌈🐞🌼
  • EAAEAA Member Posts: 88
    edited September 29
    Dear @Mimand
    Fear didn’t eventuate! My GP & Onc believed the normal ultrasound .I am at the point where I have no energy to ask for more. No energy as I’ve been feeling very well for at last 12 months.i feel satisfied with my new Onc in the private sector who sees me every 6 months. She is my fourth ..and at laSt satisfaction.
    I continue to be disappointed with early detection of further outbreaks.. like the emporer who wore no clothes, there is none. Truth telling is rare.. usually silence! I’m waiting for Liquid Biopsies to enter normal streams of early detection for we second time travellers. Last time I heard.. it hasn’t progressed far. 
    All the very best with your new onc. Feeling satisfied is paramount in care. Thanks for reconnecting.
    i too have dropped off this wonderful supportive and informative site. Go well, cherish today 💖🤯💃🎶
  • EAAEAA Member Posts: 88
    edited September 29
    Hi @Mimand.. EAA here..just a postscript..
    i informed the onc.. that I wouldn’t be paying her unless she kept me healthy.. informing her it was the old practice in Chinese medicine! As I do feel healthy’ she was worthy of payment! Once I develop more disease.. no payment!!,  well, we laughed! But, if only!! 🎶🎶🌻🌻
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