Lobular primary diagnosis now in the liver and struggling with the diagnosis

  • 7 replies
  • 26 subscribers
  • 1596 views

Hi, I had a lobular primary diagnosis in June 2019 and secondary in the liver (multiple) diagnosis July 2021. I am 53 and have a 14 and 17 yr old and wonderful husband .  Managed double mastectomy, 5 months of chemo and then radio relatively fine whilst working but just can't get my head around the secondary diagnosis even after a month.  I'm devastated.  I'm on palb and letrozole plus zoladex.  Would really appreciate any advice on coping strategies so I don't waste the time I have left with the kids.  Do the drugs work as well on Lobular?  Thank you!

  • Hi Aussie lady, 

    sorry to hear that you have joined the ranks. I too had a lobular primary and was diagnosed with SBC in May in both liver and bones. I am on paclitaxel at the moment as they were worried about the extent of my liver mets and hoping to go on to the same regime as you next. I haven’t seen anything about the efficacy in lobular tumours either, so am interested in hearing replies to your question! Mx

  • Hi M,

    I'm so sorry to hear you are dealing with this too.  May I ask how old you are?  Not sure if others will reply so I've tried googling which I know isn't always a great thing to do. Will see my oncologist in a few weeks so will ask him but he and another onco seemed to think this was the best way forward. 

    How are you managing?  

  • Hi Aussie lady, 

    I don’t just tell everyone my age you knowJoy. I am 65 and had LBC in 2005 initially. 11 years of hormone therapy but the docs said there was no evidence to extend, so 5 years on I find I have lots of liver mets and stuff in spine too. Had nine lots of chemo but no scan yet, however it has definitely helped. 
    very hard to adjust to the permanent nature of this disease, but also amazing how many options there are now compared to 15 years ago. Breast cancer.org is a good site for reliable info, despite being American! The LBC angle does not seem particularly clear.

    hang on in there but allow yourself to grieve too

  • Hi Meiard,

    Have been wondering how you are doing and managing with the chemo?  Hope it's been ok.  

    Thank you so much for your earlier reply.  I really appreciated the support.  

  • Hi. I was diagnosed with LBC 14 years ago. I had double mastectomy, chemo & radio then anastrozole for 5 years ago.  In January 2020 I was diagnosed with secondaries in bones. I'm on palbio, letrozole & denusamab. So far I have had very few side effects & compared to pre diagnosis, although I have very tired days, I can still do the majority of things I used to do. I remember that feeling of desperation & sadness when you're constantly thinking of what might happen but hopefully you'll settle into your meds routine & adjust to your new normal. Wishing you all the best. X

  • Hi Aussie lady, 

    finally had a scan after five months; paclitaxel has stopped any growth in the liver but not shrinking the tumours. I guess slow growing also means slow dying for ILC! I am desperate to go onto targConfuseded treatment which offers both a hormonal and cell killing combination. Stopped chemo as I have an infection Confused at the moment! How are you finding the side effects of pablociclib?

  • Hello Mary,  I've been wondering how you are doing so thought I'd reach out and ask.  Hope Palbo is still ok with you?  I wasn't really sure how to reach out to you other than reply to this post. Kind regards Rhonda