TNBC, metastasis to pelvic bone & liver

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Hi all, 

I’m new here, had diagnosed TNBC in January 2022, with spread to my nodes & pelvic bone. Had EC for 3 cycles then 9 weeks of patataxil & carboplatin. (Excuse spellings), 3 weeks after last chemo session had results which I expected to be good news, was a double edged sword, good news on the breast however, spread to my liver. Stable in bone & node. 
started chemo tablets two weeks ago, got covid … then this week had pain in my right side lower area, which my GP has suggested is a spread to the rib. Within next 2 days now have pain on my left side upper area. (IBS has kicked in now)! 

As you can imagine, I’m feeling a bit scared and not sure what to do, have spoke on the hotline, (before second pain) told me to take the codeine tablets. However these have kicked off the IBS. i am due to have full bone scan on Friday & have appt with my oncologist next Monday. 

has anyone else experienced this & whilst I’m waiting anyone have any advice? 
much appreciated 

thanks 

Ali x 

  • I have TNBC but not (at least at this stage) any confirmed spread. Mine was found fairly early through a routine mammogram so I had surgery first. They found vascular invasion in my tumour when it was excised, so I am at risk of it having spread, even though my sentinel nodes were clear. I have had 4 EC and am part of the way through 12 weeks of Paclitaxel. I recently had severe abdominal pain with an infection and had a spell in hospital as a result. I am waiting on the results of a CT scan as they decided to do full chest, abdomen, pelvis cancer staging as well as check for diverticulitis or other reasons for the immediate problem. Waiting for results and waiting for a plan is always the worst bit. I know it’s hard but try not to think of worst case scenarios, and try to keep yourself busy doing things you enjoy. I am sure it will seem a long week and I wish you all the best. 

  • Thank you, and to you too, x 

  • thank you, over the last couple of weeks have been a roller coaster, i ended up in hospital with pain in my right side and abdomen, hurt to breathe, after CT scan and xray confirmed the cancer has spread,  I am scared of the aggressive growth rate, as i am BRAC1 positive too, its in my liver more so than previously, the tumours had more than doubled and the spread is vast in a couple of weeks, my options have become narrowed down, as the previous chemotherapies and tablets have reduced the cancer in the breast, it has not stopped the spread, the mets are also in my bones (pelvic and poss ribs).

    From the start i was told there are options and if one does not work there are more, the last appointment i was told the options are limited, not eligible for tirals that i had been put forward for,  Imunotherapy is a last chance. i asked re prognosis and was told not great. however if the treatment works then gives me more time. 

    yes prepare for the worse hope for the best, exactly what i and my family have been and continue to work through. 

    I.m to start Erubilin, tomorrow as  last chance to contain/reduce the cancer, i feel hopeful and a bit more positive today, compared to last couple of weeks. just hope good news this time.  

    I hope your results come good, wish you the best.  

  • Sorry to hear the latest developments and hope they can find a way of containing or preferably reducing it and that you can manage your pain. Almost 4 weeks on, my CT results are not back. 

  • Can’t believe how long the results have taken?

  • I cant 4 weeks is a very long time, most of my results came back within 1-2weeks. 
    have you chased them up? 

  • Yes I have and so has the consultant. There’s a nationwide shortage of radiographers so no one has analysed them yet.