Just diagnosed

Mine came back after 18 years. I am like you, feeling sad but also angry for being in the same position again, but worse this time. Seems overwhelming 

I had primary breast cancer in 2007 with a recurrence in 2012 when I was switched from Tamoxifen to Letrozole. Diagnosed with secondary cancer in lungs, liver and bones late 2022 which came as a shock, but deep down I think I expected it. Three months on Fulvestrant and Palbociclib didn't do any good but three months on Taxol reduced the tumours quite a bit. I am now about to start Capecitabine in the next few weeks. Obviously chemo isn't great but it can keep you going with a reasonable quality of life, even if it is limited. It is normal to feel overwhelmed, but take everything one day at a time. I have had two Christmases that I didn't expect, and am looking forward to the summer, with a few plans in the bag.

Sorry to hear this - very similar to my story mine was first diagnosed as arthritis in hip on further investigation it was cancer back in my right femur. I had this pinned within a week of finding ithen further scans etc- I have had 6 rounds of docatexel chemo with phesgo - now just on phesgo injections and denenusab every 3weeks - I have had 40 injections so far - and and all ct scans have be stable - got another today so still stable. Just to let you know there is plenty of treatment available- so please be positive- I know it’s hard , my children and grandchildren keep me going! Hope this helps you at this very difficult time- like you I thought after 15 years there was no chance of returning, take care x

Hi Sea Ranger

Mine has come back after 20 years and as a complete shock.  I thought I was doing fine but I'm having a few wobbles - mainly because I find planning anything for the future difficult and the subject of holidays keeps cropping up just lately. 

I read on the Breast Cancer Now site that one of the ladies on there has been having treatment for secondaries for 20 years so I find I'm hanging on to those stories and skipping over the less optimistic ones.  I'm also trying to remind myself that it's not curable but it is treatable and regarded more as a chronic disease these days.  I'm also struggling a bit because when I had it in 2002/3 there seemed a lot of support out there from ladies going through the same thing.  Now I'm the only one I know with secondary breast cancer so although my husband, family and friends are very supportive I'm feeling a bit isolated.  I was the only one with secondaries at the local support group and it was mainly discussing problems with primary treatments and side effects of chemo.  

Even the BCN site seems thin on the ground with ladies going through this - but I do feel I just need to turn to others who are in this position and know what I'm going through - hence me turning up here.  

Anyway I wish you and all the other folk on here, well.  x

Hi Winship - it's posts like yours which keep me going.  Thank you. x

Hi Coolnanny, thankyou for replying. I'v now had it confirmed that thera are also 2mets in my thoracic vertebrae. Have now started on Letrozole and Ribociclib.

My oncologist also said I'd be having this STBR radiotherapy, but when I met the Radiotherapist consultant she told me that the latest studies show no benefit from STBR to people in my situation. this was a bit of a blow, although I'm getting my head my head around the fact that there is no point in having treatment that has no benefit. 

I'm not sure if the slumps in energy are due to the drugs or my emotional state! Hard to fathom. Take care.

Hi Sea Ranger - nice to hear from you.

I'm on Letrozole, Palbociclib, which is similar to ribociclib I think, and 4 weekly injections of Denosumab.  I was quite ill and tired with it all at first too, but I think that was half down to stress and shock, but I'm mostly fine now so fingers crossed you get used to it too - I was told it could be tough going at first.  Now I feel in a much better place too - just had a few blips with my blood and neutrophils but my dose was reduced and last time I went they'd all gone up.  

I'd never heard of STBR radiotherapy but at the start I'm fairly sure they said if the pain gets too much or there were worrying areas they could give me radiotherapy but now there's some mixed messaging about whether the sciatica like pain I'm getting is caused by the cancer or if it is "just" plain old sciatica - it comes and goes and breast cancer nurse says that there is no reason why my cancer should be causing any significant pain and cancer pain is constant, but the oncologist said I had to expect pain because I had mets and it was too early for the Denosumab to be taking the pain away.  I honestly don't think they know.  It's not a problem really - I just take paracetamol and sit down if it gets too painful and that does the trick. 

Hope you're enjoying this weather. Take care and good luck with the treatment. X