Been livng with stage 4 bc spread to bones for 2 and half years. On letrozole Denosumab and ribociclib. I have appointment every 12 weeks with oncology with bloods done 2 days before and the results sent to Velindre. Been having scans 6 monthly and timed so i get results at my 12 week appointment to discuss bloods and scans. So far until now stable. Am due to go to my next oncology meet 2 October. Had scans couple of weeks ago so was expecting to get results like i usually do at meeting. Outta the blue today i had a phone call from velindre saying oncologist wants a telephone meeting Thursday to talk about scan results. Now my mind is racing all over thinking the worst. After all, they not gonna ring me to say hey i know youre here in 2 weeks but we are ringing to tell you all ok and stable.
Anyone else be in this situation?
You are going to be spiralling with thinking about the phone call but maybe they are just phoning to give you results. Do try to be positive - hard as it is but you have been stable up to now so why shouldn’t you still be? My husband always says that to me when waiting for the results!
I also have had Stage 4 Secondary BC in my bones for 2.5 years so know exactly how you feel waiting for the results of the CT Scan. I’m on Palbociclib, Denosumab & Letrozole.
Good luck & best wishes, thinking of you 
Hi Carols89,
I wouldnt normally worry but as its only 2 weeks away from my regular appointment and when its stable they just tell me at the appointment, I have never ever been phoned the results and its been that way for 2 years. I was told its about the scans I had done a couple of weeks ago, these were covering a larger area than usual, so I know its not the usual, its just waiting to find out the degree of how bad, the waiting is awful.
How are you with the side effects of the treatment, particularly letrozole?
This horrible journey that we are on, makes anything out of the ordinary seem serious & bad news, so I know exactly where you are coming from.
At my last scan, it was noted that I had enlarged lymph nodes in my chest. So even though I was stable, I focused on these. The oncologist says she’s not worried as they may well be smaller next time.
I have been lucky & haven’t suffered from too many side effects. I do get vaginal thrush (I’ve never suffered before) but Canestan usually cures it. I do get tired quite easily so pace myself with the fatigue. I started on Ribociclib but it was too much for my Neutrophils so I changed to Palbociclib after 2 months.
Take care & do let me know how you get on 
Hi …I am on the same medication you are on …also 2BC spread to hip/spine since Nov22
I know what you are going through…I spiral terrible…once the scan report said my bone loss had increased…I was stressed for weeks until my Surgeon said he couldn’t see any deterioration … unfortunately my bone loss has not decreased despite being on denosumab for over 2 years but I try to keep my stress under control by going to hydrotherapy(NHS & private) and gym work …feel more positive and I know some people are a lot worse off than me …
I try to keep to my review cycles (4 monthly)…my experience of the BC Nurses has been a bit mixed but I did call the Christie Hotline for advice (very helpful)…and I know my consultant will be aware of this at my next review
.stay positive and keep busy Hope this is helpful
Hi, thank you for your reply, I am expecting the call any time today between 12 and 3.30 so am a bit on edge to say the least! My mets are in left lung, but very very small and 5 parts of spine, one at top in the neck area, three in middle of spine and one at the bottom. So you have been roughly two and half to three years coming up?
I have been told I have arthritis in left shoulder and knee, my GP sent me for xrays. I am due for physio tomorrow on shoulder as I am losing range of movement and the pain is really bad.
I keep getting conflicting advice regarding pain relief too. My GP said dont use Ibuprofen but the cancer nurse said to use it! ARRGGHHHH
Hope you are having a good day and take care xx
Thankyou for responding …hope your call you where waiting for yesterday was helpful to you …you have allot going on …i had NHS Physio but found it helpful but frustrating as no actual contact from the Physio …then i went private ( a friend recommended a private clinic ) …re pain relief i went with what my consultant advised and I am also under a surgeon ( still deciding on a complex hip operation) …but I am in no pain but feeling frustrated at using crutches outside 100% …Luckily I am now medically retired so can take things at my own pace …please look after yourself …
I waited all day yesterday and got called at 4.55 pm. Someone had put me down for a scheduled phone meeting by mistake. I had 4 days of going out of my mind with worry. The good news is my scans show everything is stable. They always and i mean always tell me the scan results at my face to face regular oncology appointment. I was imagining all kinds of awful things. I was a mix of angry but relieved at the same time.