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Recurrence after 10 years


hello lovelies

Well such terrible news. I had lobular ten years ago just about to celebrate getting to ten yearsthen due to back pain and tummy pain had pet/ct which shows ten bone Mets big one base of spine, Mets to chest wall, retroperitineal - GP thinks it will be stage 4. I'm seeing my oncologist in two days will let you know.

But he has said he will treat it with hormones letrozole and ibrance not chemo. Also said ideally wants to biopsy but because of locations not advisable. I've been vomiting terrible bile like brown liquid - can't keep food down - and my tummy is beyond uncomfortable and painful. It is so true how many of you say trust your instincts I knew that it had come back because I'd lost loads of weight and had been so so unwell. I was terrified PET CT would miss it so I sent radiologist a clinical paper on the difficulty of imaging lobular as well as key bullet points from Prof Gary Ulamer's presentation on lobular and FDG avidity.

Anyway very disappointed and just keeping everyone up to date. Chat soon


  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022

    Ah, I'm so sorry you're back. My comment will bump this back to the top, so perhaps someone else will respond who can be more helpful about your diagnosis.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited February 2022

    So sorry to hear intheclub.

  • malebreastc
    malebreastc Member Posts: 93
    edited February 2022

    Intgeclub- Sorry to know about your recurrence, I was diagnosed with a recurrence after 17 years when I had totally forgotten about it.

    I am on hormone therapy, my suggestion is don’t bother about the stage etc, just remember that it is a treatable situation and with the new advances there are multiple options of treatment.

    I personally believe that medical science has advanced considerably in the last decade so an initial diagnosis 10 years back and recurrence now are both equally treatable..

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022

    intheclu - so sorry that you are back!

  • moderators
    moderators Posts: 8,219
    edited February 2022

    Dear intheclub,

    We are so sorry to hear this news. Keep us posted. We are all here for you.

    The Mods

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2022

    Hello, intheclub. Ugh, what a blow after ten years NED. It is not surprising that your next treatment may not be chemo. Go ahead and use the hormonal plus targeted therapies if you can. Before you start see if you can get an order for a "liquid biopsy" that is done with a blood test. It may show tumor mutations that will help with choice of therapy (PI3KCA=Piqray, ERBB2=neratinib etc). Or maybe a gastroenterologist can biopsy the stomach via endoscopy or ERCP. You will need a gastro specialist on your team.

    I was vomiting bile every afternoon because of the cancer obstructing the outlet of my stomach to my intestines. They placed a drainage G-tube to drain it and make me comfortable. It was placed during an ERCP procedure under moderate anesthesia. Unfortunately the blockage is bad and I currently get my nutrition from IV only (TPN). I can have clear liquids for pleasure; they drain out the tube.

    I'll watch for your update. I'm sorry you find yourself in this situation.

  • intheclub
    intheclub Member Posts: 20
    edited February 2022

    thank you to each and every one of you for your helpful comments.

    Now of course I am fixated from knowing how long other lobular girls have survived. Should I start a new thread or just stay here. I’ve been told it’s incurable but will be on ibrance and letrozole for as long as it works. Where can I go to try learn how long others have survived - gosh what a terrible concept! But I’m now wanting to know what other girls have done that worked and start understanding stage 4.

    Like everyone I am determined to survive. It would be great to hear from others who are surviving and any thing I can do to stay surviving. Thank you everyone. xo

  • lakelandgirl
    lakelandgirl Member Posts: 2
    edited April 2022

    I also had Mets appear after just under 10 years (ductal) -after a double mast., chemo and 7 yrs of AI. Found out this past 12/21 after some back pain wouldn’t go away … had Mets in lower spine, sacrum, liver and femur with a few spots elsewhere. Hello Stage IV. I was in a lot of pain and couldn’t eat, needed assistance walking … pretty horrible but I have great Drs and a strong spirit. Had radiation to my back/sacrum, then surgery to put rod in my femur to strengthen it, then rad on whole femur. The radiation was really effective at getting rid of pain and I now am mobile/comfortable again. That feels great. Am on IBrance pills and Faslodex monthly injections and also -for 6 months-Zometa to strengthen my bones. I won’t have a scan for about a month and then I sure Hope to see those. !#! cancer cells in retreat. Hang in there. It’s a marathon not a quick race but they are seeing better results these days. So, I relate to your frustration.I’m 5 months into it … still trying to wrap my head around this new reality!

  • edwards750
    edwards750 Member Posts: 1,568
    edited April 2022

    OMG so sorry for you guys and getting nervous for myself. August 2021 was 10 years for me. I was DX with IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments plus Armidex and then Tamoxifen for 5 years. My Oncotype score was 11. My next mammogram is July.
    You would think we could relax after 10 years but no it’s the gift that keeps on giving. Ugh.

    Good luck ladies.


  • salamandra
    salamandra Member Posts: 745
    edited April 2022

    Hi intheclub, that really sucks.

    I hope it's ok to chime in even though I'm not stage 4 (my superstitious side feels like I have to add 'for now').

    I've been reading these boards for a while now, and there are definitely good resources here for lobular, stage 4, bone mets, and combinations of them.

    My impression is that the location of the mets matters a great deal in terms of treatment and prognosis. When you are reading/learning, make sure you are looking specifically at bone mets threads in the stage 4 topic. That will be most applicable to you, and fwiw, my impression from these boards is that bone mets is one of the most treatable metastasis situations.

    I have read (here on these boards) of women who are still maintaining NED (no evidence of disease) 10+ years after a bone mets diagnosis.

    Wishing you good luck and bon courage!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2022

    lakelandgirl and intheclub,

    Just a quick note to say that I’m thinking of you. I also had a long period between my initial diagnosis and stage IV (almost 16 years). While it’s horrible to be in this place, the good news is that our cancers are slower growing. My MO expected me to do well for a long time. It’s not been without its challenges, unfortunately I couldn’t tolerate Ibrance and so I didn’t get as much time out of the CDK inhibitors as we hoped but I’m over five years out and not giving up yet. Hang in there.