Breast Cancer Now Forum

Oh Alison, I am not surprised you are feeling low and scared. Your Oncs should be ashamed of themselves and need to learn better patient interaction skills. I have just replied to artygirl and I  will say the same to you. Hold on to hope. I know that must be particularly hard at the moment, especially the way your Oncs have behaved BUT no one can really predict how any individual will respond to treatment or how long we have to live. I had my primary in 1999, had everything thrown at it, in 2010  after many months of pain I  was finally listened to and was found to have bone mets.  I have had radiotherapy and have been on Femara and 4 weekly infusions of Zometa plus the calcium/vitamin D. I am more easily tired than I  used to be, my pain levels fluctuate but are generally well-controlled, I find standing for any length of time uncomfortable/painful and my mobility is not what it was (I often need to stop for a little rest). However, I  am still here, still living my life, still enjoying myself and mostly doing well. You do get used to a new normal, it takes a little while but you get there I'm afraid you are not alone with the reaction of others. I  know quite a lot of us have lost contact with people we thought were friends. However, this site is a good place to make new friends, ones who understand. Best wishes fr the following few appts, I  hope they improve and I  hope you get paid n relief and a good treatment plan, xx ... View more

Hi artygirl, I am sorry you find yourself joining us. It is hard to take it all on board at the start but I  hope you'll see from the forum that there are lots of us living for a good while with secondaries. You will see on this particular thread that I  was posting years ago 😀 I do not have liver involvement but I  do have bone mets. I was dx with bone mets in March 2010 so am in my 11th year!! 😄😁 of secondaries. My mantra has always been hold on to hope and I  hope that by seeing there are people like me on the forums who are years living with mets, that those like you, more newly diagnosed, will get some hope for your own future. Good luck with treatment when it starts, I  found it a little easier to deal with once I  had a treatment plan and knew there was something being done to help control further spread. Do keep using the forum it's a great source of information and support. With best wishes JulieD X ... View more

Hi Rachel   I have been living with bone mets for nine and a half years now and am still here and doing ok    Initially I  had CT  scans every 3 months and annual mammograms. Now my Onc says (like yours does) that mammo is not necessary as CT would spot things. I  had a lumpectomy/WLE so unlike you my primary was removed. I  think if I  still had my primary I'd want more reassurance and would be asking my Onc for mammo occasionally just to keep my mind/emotions under control (but that's just me).   After a while of being 'stable' my CTs moved to 6 monthly - there was a suggestion at one point that I move to annual CT but I wasn't happy with that and Onc continues to do them 6 monthly.   I've asked the question about arms and legs myself and the response I  got is that mets don't normally go to the 'long' bones. I know that this isn't actually true as I  know women who have bone mets in their legs/ankles. It would seem general practice thouh to only look at those areas if a problem arises. I do have a nuclear bone scan (different from bone density scan) every 2-3 years and that does normally deal with whole body and would show up 'hot spots'   Hope this  helps a little. Good luck with treatment x   ... View more

I  haven't posted for ages but I  do still pop in and keep an eye on everyone. I'm sorry to see your latest results  Bon. You say that the meningioma is not bc, have you seen a different oncologist about it? There may be options including surgery or rads. I'm sorry if you've already covered this with your team but just wanted to make sure you've been given all the info you need. Here are a couple of links if you want to look, but obviously you know better than me what you want you want to follow up or check out   https://meningiomauk.org/meningioma-facts/   https://www.macmillan.org.uk/information-and-support/brain-tumours/understanding-cancer/types-of-brain-tumour/meningioma.html#155374   With every good wish to you  Julie x       ... View more

So very sorry to hear of Barton passing. She was a lovely person and a great support to many. RIP Fran xx ... View more

I'm shocked and saddened to read this. I  knew Moijan had been having a few iss ues lately but I  hadn't realised she was so poorly.   Moijan was a warm. caring woman and always willing to share information and advice and give support tothose who needed it.   She will be missed here. I  shall miss her.   Be at peace Moijan, thank you for your friendship xx ... View more

Hello ladies, sorry I  havenn't posted for ages but I  do still read your posts even if I  don't always comment, Welcome to all the new members, I  see you have been well looked after by the lovely women on this thread. It's rotten any of us have to be here but thank goodness we have each other for support!   I'm still on Zometa. Denosumab is the new kid on the block and is now considered the 'gold standard' treatment as was Zometa when it first came into use. I  was offered D but as I  have a port which would still need flushing and as Z has kept me stable for 7 years I  saw no point in messing around with something that was working. I  can't comment on D but I  know that Z can give you achey joints. I  have know people on Examestane who say they have aches and pains with tht at times. I  think these aches and pains are often a mixture of the medications, the way we might hold our bodies differently etc and the mets themselves. Sometimes our bodies adjust, sometimes the pain comes and goes and sometimes we have to take pain meds regularly. I  would say to anyone suffering, talk to your medics and see if they can help, don't just go on suffering when you could be more comfortable - I  have pain patches which I  supplement when necessary with co-codomol.   Bone scans use radioactive dye and give a more detailed pictre of the bones, abnormal areas absorb the dye faster and so any problem areas show up as 'hot spots'. .Not all hotspots are necesaarily cancer though.So for diagnostic purposes bone scans are often used as well as CT scans.   I  will try to resume my regular postings and am sorry I've been a bit abscent, life sometimes gets in the way . Have as good a week as possible and hold on to hope. xx ... View more