Rubbish scan results today and scared!!!

Brief background- diagnosed Sept 2010, multiple small lung mets. Letrozole worked for about 3.5 years and got me to NED for about a year. Last Sept scan showed progression, bak in 1 lung and liver lesion, 1.7cm.
On E/E then scan last week. Further progression, now both lungs, some in lung pleura, liver lesion now 3.2cms and another small one!
Treatment plan is capecitabine. I asked about change of status and onc has agreed to biopsy liver if it’s possible, really for HER2 status.
Original tumour was grade 1 and one of the concerns is that the cancer is now not behaving as grade 1, it seems to more aggressive.
I’m really scared!!! The first 4 years were a breeze and it’s now a huge shock!!!
Anyone got similiar tales???

Hi Glo
Sorry to read that you are feeling so scared at the moment, along with the valuable support you will find here, our helpliners are on hand with support and a listening ear on 0808 800 6000, 9-5 weekdays and 10-2 Saturdays so please feel free to call
Take care
Lucy BCC

Hi Glo
Sorry to hear that the e/e combination has not helped keeping things at bay. I have a similar story to yours so thought I’d add my experiences which may help you. I was ER+, PR+, HER2- for my primary in 2003 and stayed the same receptor status when I had a local recurrence in 2008 which, on further scans etc showed I’d also got bone mets. After initial chemo for these I went on to Arimidex which kept my bone mets stable until 2013. I then declined some leg pain and I insisted on more scans even though my onc, who was very good, didn’t think it was related to my mets. We were both shocked to find out that my mets had spread to my liver. From learning from this forum about receptor status changing in up to 30% of cases I asked for a liver biopsy. This came back as me still being highly ER+, slightly less PR+ but also HER2+ a complete change in HER2 status from my previous 10 years with BC. Again my onc was very surprised at this but meant that my treatment wouldn’t just be hormone based. I went onto Capecitabine which kept my liver mets stable, and shrinking for about 18 months and am now on Herceptin and Perjeta having had Taxotere chemo last year. I have suffered from other health issues with my heart caused by the initial chemo in 2008 so wasn’t able to have Herceptin treatment before last year but even without this the Cape worked really well. I would definitely ask for a liver biopsy if your lesion/s are accessible, it’s not a pleasant procedure but not really bad either. In fact when I went for a second opinion at The Marsden the top Prof there said everyone should have a biopsy done if possible as my case showed how things can change. My first 5 years, other than the chemo part, were also a breeze so it was a shock to go back into active treatment so to speak but I’ve had to accept it, that’s just the hand I’ve been dealt!
Take care and do ask any questions if you want more info, I can always PM you.
Nicky x