Breast Cancer Care Forum

Hi ladies Not gone - yet!  Can't wait as weather looks fab. Packing nearly organised, just been trying to get a few more beachy type clothes as we intend chillin' out a lot and havent had a holiday to do this in years! Most of our recent holidays have been in Europe (not complaining!) and based around cities where we've done a lot of sight seeing. But this has meant smarter clothes rather than beach ready shorts ha ha. Of course this time of the year is a bit of a challenge to even see the right clothes in the shops as you ahve to fight through the rails of winter sales clothes.  But it's a task I feel I've been up to!  At least whatever I have bought can hopefully be used later when the summer weather catches up with us in the UK - fingers crossed. No real news from me other than 'sandwich' duties (although my Mum sweetly gave me a some dollars to treat myself with whilst away in recognition of all the help I've been giving her). A bit of childminding but not too much which is good as I do get exhausted with a full days worth. Only brief hospital visits (one due later today for treatment/injections).  All in all a bit of a lull which is nice - but I expect this to all change at some point so I'm enjoying it whilst it lasts. Hope all of you are doing OK, good to have a quick catch up from all of us - except Lisa Loo La ;-) who is always a busy bee. Enjoy the rest of the week off Lily and lets keep the sun shining wherever we are. Nicky xx ... View more

Hi PinziA Thank you for your update and how your ONJ was eventually sorted out - albeit at considerable personal expense.  I for one have not been bored by any of your updates about this and I'm sure others havent been either.  It's always so useful to share our own experiences with each other on here.  If no-one did this none of us would know where to start!  I for one also bang on about my heart failure problems (caused by FEC chemo) but if I hadnt done I know at least one particular member of the forum wouldnt have sought out the same specialist cardiologist who treated me and would have still been suffering.  Unfortunately, with secondary BC, we do have to become our own experts as we are living with this for the rest of our lives but sharing that expert knowledge does help others. Good luck with the treatment you had and I hope it has sorted out the ONJ and you are out of pain now. Nicky xx ... View more

Hi Wizzyden So sorry you are in limbo at the moment, we all know what that feels like and how our minds play silly games with us whilst we wait for results. Although I have liver mets I can't say one way or the other whether your pain is liver related.  To be honest I have sometimes convinced myself my liver mets have got worse when in fact a scan has shown they have shrunk.  We imagine everything that aches is caused by cancer and unfortunately we have to rely on the medical team to tell us yes or no.  As you have recently had a blood test can you contact your BCN and get your liver function test results?  It may put your mind at rest.  I also understand what its like to lose a loved one unexpectedly as my Dad also died last October and generally I had to deal with all the paperwork and arrangements even though I still have my Mum and 2 brothers.  Not an easy time at all especially when you are no doubt supporting your daughter as well.  I do hope you get some answers soon from your team and at least know what your dealing with.  Most of us seem to be able to cope better once we have a treatment plan in place. Nicky x ... View more

Hi becket, I don’t think there is a ‘classic’ set of symptoms that warn you of mets (secondary BC) so it’s difficult to say what your ache is. It is worth having it checked out if you’re really worried so it’s good that your BCN has organised that for you - even though you probably don’t want it! We all know what that feels like, we call it scanxiety on here! rustyharas, again, a full body scan is a good idea but comes with its own scanxiety. And, again, yes we all have those wishes of getting some good news for a change, who wouldn’t? As something that may help I am currently on much better shape physically and mentally than I was 6 years ago when I was told my bone mets had spread to my liver. I actually have less BC in my liver than I did then and my bone mets have remained stable. I was also suffering from heart failure, caused by FEC chemo, but have had amazing treatments through the NHS which have sorted out my heart so it’s back to normal and removed my liver mets (I had an operation last year to remove them) so it is possible that it doesn’t always get worse, sometimes it gets better. As to whether you work or not that is obviously down to the individual. Anne30 is doing great after the huge shock of her diagnosis last year. I also worked through chemo for my mets some 11 years ago but my job allowed it and I coped well with the chemo side effects but we’re not all able to. I did give up work when my liver mets were diagnosed as I couldn’t continue with the type of job I was doing. It is worth considering looking at benefits such as ESAif you have to stop work or cut back on hours. These can help with financial gaps caused by not working any more and you can usually get advice from MacMillan about if you’re entitled to claim. Nicky x ... View more

Hi ladies Lorraine, I’m on Fulvestrant at the moment and have been for about a year. I had a liver resection done last April which knocked my liver mets out (I currently don’t have any visible on a CT scan but that’s not to say they aren’t there! Just too small to pick up probably). I expect it to fail at some point in the near future mainly because this is about my 7th line of treatment so I’m unlikely to get such a long run out of it, we’ll see. Linda, yes, it’s a blow when a treatment fails. I sailed along nicely for about 4-5 years on hormonal treatment after my mets were diagnosed and got into that false sense of security that I’d be fine. The first time I had progression (to my liver) hit me so hard I was really close to clinical depression. It didn’t help that at the time my heart failure was getting worse (thanks to FEC). Part of feeling so low was having to face up to the fact that a treatment had failed and then having to deal with a new treatment and all the side effects etc. So I know exactly how you, and everyone else, feels like. Good luck on Tamoxifen though and with the scan results. Nicky x ... View more

Wow mo, that is a difficult ‘story’ to tell and no wonder you had said on the other thread that you were summoning up the energy to write about your experience. I can’t imagine what you have gone through and had to deal with. I think we all, in the back of our minds, know that at some point we will have ‘that conversation’ with our oncologists but not when as far as we know there are more treatment options and we feel as well as we do. A huge shock when you weren’t expecting it. I do hope you regain the weight you unfortunately lost, it sounds like you need it when you have always weighed in at such a low weight overall. And of course I’m hoping that Cape will work and knock back all those little uggers.  Thank you also for your kind words about my help on here. I try to give back as I have found such great advice and support over the 11 years I’ve been on here, some things that have changed my view on my particular BC as well as knowledge to fight my own cause with my oncologists.  Good luck to you mo, do keep us updated on whatever thread you’re on next and feel freee to PM me if you want - that’s if it works! I’ve not tried it on this new forum format yet! Hugs to all other liver ladies, how are you all doing? Nicky xx ... View more

Sending all you ladies who have found out in the last few days that Taxol isnt doing its job any longer a big hug.  Difficult times but I do hope you all find a treatment that works well for you. Hi Linda, hope you are doing well on tamoxifen and the scan results are good when you get them. Nicky xx ... View more

Hi Janey How horrible for you.  I know a few ladies have had ONJ but is sounds like yours is particularly bad.  I do hope the pain subsides and there is something that can be done to prevent this happening again. Nicky x ... View more

Hi Carolyn, sending you a big hug. I do hope you start feeling better soon. Ramade, same to you as well. Poor you, both of you. Cape seems such an 'easy' chemo but I don't think there's anything easy about chemo full stop. Hope everyone feels better and that the sun coming out and a bit of warmth will do us all good. Nicky xx   ... View more

Hi rustyharas Sorry you have to find yoiurself in the place that none of us want to be in.  Unfortunartely breast cancer is a crafty little bugger and can come back even when you've been given an excellent prognosis after treatment for primary BC. The same thing happened to me. Great prognosis with primary, low grade, found early, no lymph node involvement.  Hey presto nearly 5 years on from that I found I had bone mets.  I just wanted to add some support as it is a horrible time that you are going through, waiting to find out what happens next. You will find on this part of the forum that many of us are living well with bone mets, I'm currently coming up to 11 years with them (as well as now having liver mets although they are a different story).  I think this thread has gone so quiet due to the change in the forum - no one can find it! And when they do our posts get lost, grrrrr.  There are many of us out there with bone mets and another reason this can go quiet is that unkess things have progressed or changed we often are not posting, and tend to do so more when a change int reatment is needed. One thing you will find out is we do not seem to all have the same treatment on initial diagnosis of mets. This will be down to our receptor status and also sometimes down to our oncologists view.  It can be chemo or 'just' hormone treatment (if we are hormone positive) or a Herceptin based treatment if we are HER2 +. Sometimes targetted radiotherapy is also used but this tends to be when there is significant pain.  Most of us have had a bone scan which does give a clearer 'picture' of our bone mets but quite often this isnt repeated and can be used for diagnostic ourposes only. You're right about CT scans not picking up very small mets, MRI's are more accurate and I'm not sure about PET scans as my hospital doesn't use them.  Most often, along with your chemo/hormone/herceptin you will also be given a bone strengthening treatment.  Most of us are on the newest drug, Denosumab, but others are on infusions or even tablets, agsin, this will depend on your oncologists choice to some extent.  Also, as this is your first diagnosis of mets (and therefore first line treatment for mets) you may be given additional, newer drugs alongside whatever treatment you go onto. Almost all of us found that once we had a treatment plan in place we were more able to adjust and cope with our secondary diagnosis.  Take your time it is a huge shock for you and your family.  Please come back on here with any questions you may have and to get support from fellow SBC ladies.  Hopefully some of the other longer term members will come along to offer their advice as well. Good luck Nicky x   ... View more

Hi A couple of other annoyances with the new format.  They may have already been brought to your attention Becca but I'll add them anyway. If you are just reading the forum it seems you can add a reply without logging on/signing in. This is a pain as when you try to post, when you've finished typing, you then also tick the 'I'm not a robot' box but then your post is lost as you are not actually logged in.  Previous incarnations of the forum ALWAYS made you log in BEFORE you could post a reply.  Please rectify this as its very frustrating to type a detailed post only to lose it when you try to post it. Also on each thread there is either a date and (very precise) time of when the thread was started such as ' 01-12-2017   07:10'  or sometimes just something like '4 weeks ago' Can we not go back to just the date?  This is very useful especially for us ladies with secondaries who often use threads started years and years ago.  It's also more use to know the date of the last reply to a thread. Again it can either be like this: ' Latest post  9m ago   by  nicky08' or like this: ' Latest post  a week ago   by .....' or 'Latest post  a month ago  by....' (Having just written this I have seen some 'Latest post' info showing date and time so there's no consistency)   For this part of my observation please just go back to how it was, it worked for all of us!  Nicky ... View more

Hi At the moment I can do both 20th and 27th but not the earlier Wednesdays. Btw Wednesdays suit me the best as I seem to have fewer other things going on in the middle of the week. Nicky x ... View more

Hi stillhere I only wrote what I thought the amount for a European annual policy was so I may have got it completely wrong! If they have quoted under £80 and you have informed them of your mets then I'd say its correct.  Interestingly I read the policy booklet they send me yesterday (I hadnt got round to checking the specifics) and they do rely on you having an EHIC card for European medical care (if it's needed whilst away of course).  This is the same for Eurotunnel's Annual European Travel Insurance and they quote about the same amount, £80, (I had the policy last year before they removed travel to islands which I believe they did).  Btw I did check with AXA and their European cover does include islands and cruises but please check with them and not rely on my memory - too much chemo is not good for certain things!  Obviously none of us know exactly what will happen with the EHIC after Brexit but it sounds like a reciprocal agreement would be in place and as I (we) have taken out our policy before this happens I'm assuming the cover is still valid whatever happens after Brexit. Btw Ndw32548 I don't know any specifics regarding brain mets but you may be able to try AXA.  However their clause about being 'terminal' means you are expected to live for a year after the start of your policy which would be difficult for many of us, and our oncologists, to work out! I have used them on the basis that my current treatment would be likely to ensure I am alive in a year and therefore I can use it to cover my travel immediately however I certainly wouldn't be using the policy towards the end of that 12 month period (of the policy) if my health had deteriorated. In fact I wouldn't be travelling at all. Nicky x ... View more

Hi mo I agree the new forum format seems to lose posts quite regularly and saving them beforehand seems the only way to make sure what we’ve spend time writing isn’t lost in the ether!  I replied to a separate post the other day, in quite a lot of detail only for it to be lost. Funnily enough I went to reply to the original post and thought it strange that I seemed to be logged in as I usually log out as soon as I have written something. Anyway it allowed me to post a reply and then confirm I was not a robot and then lost the post as I wasn’t logged in after all. Grrrrrrr. Anyway thank you as well for your kind words. We are all doing well as a family although I think my Mum is now feeling my Dads death, and absence, more acutely now than when he died in October. I’m sure it will hit us all in different ways and I’m not sure i have accepted it yet. However life, for all of us, does go on and my young grandson is a joy and certainly helps whether he knows it or not! Nicky xx ... View more

Hi buddyfan  It used to be a ‘sticky’ thread but this tag got removed a few months ago. I agree it needs to be as it’s very useful to share with other secondary ladies. I was going to add my latest info on it a few weeks ago but couldn’t be bothered to search for it in the new forum format as I was also having problems using the new format on my pc. However now the thread is on the first page I’ll add my info. I have just got an annual policy from AXA PPP for £460. This covers both me and my husband and is a worldwide policy including USA. I have bone and liver mets although they don’t ask any questions at all. They do an annual European policy which I think is about £295 but I can’t remember exactly what the policy cost was. Nicky x ... View more

Lovely to meet up with you all on Wednesday.  I think we timed the meet up just right, in between snow last week and heavy rain and strong winds this week. Hoping all of you who have scans coming up soon get good results. Hopefully we can sort out another meet up towards the end of March?  Apart from my hols I have a few birthdays and other dates (and scans etc) to work around.  Maybe if some dates can be suggested for the end of the March we can agree one with plenty of notice this time?  As I'll be away I may not be able to log on and sort this out so if someone else can put some dates up we can all say which suits us best? Meeting place can be Portsmouth or Winchester if that suits us all. Nicky x ... View more

Hi ladies Sorry it's been a while Ive been up to it with other things (mainly being a 'sandwich carer' as I think it's called ha ha) plus a few days out here and there and trying to log on to the new forum.  All thungs sent to keep me away from posting! I'll try to catch up. Lily, I hope, when you do get your appointment you have a list of questions and the the right answers to them and the op is less intrusive than you are imagining.  Let us know hiw it goes and what is decided.  How is Mum doing?  In terms of recovery as well as hoping she is aware of how much you are helping her. Carole, has the bird feeder netting come through yet? Urgh. I'm hoping youre not checking all the time but I expect you'll need to to make sure all is OK.  Love the photos of the 2 pooches. Lisa, good catch up from you, again with lots of planning to do for weddings and family celebrstions - what a busy girl you are (as always).  Hope you are enjoying all of it, something(s) to look forward to. Well, yet again we had severe snow and Basingstoke was gridlocked, abandoned cars, blocked motorway, snowy then icy roads - just the same as a few years ago.  OH and I ended up do a few walks out on Saturday to get provisions!  All very lovely and pretty but quite exhausting by the end of the day.  The clearing pur driveway on Sunday ready for OH to be able to get out and drive to work on Monday.  I had GS all day Monday (adding to the exhaustion) and also overnight last night and this morning - making it a very busy week with little time in the middle to do things I actually needed to do. Never mind, as you've all said, I've got something to look forward to which bith OH and I need. He is very involved with lots of financial details with his work at the moment but is adamant we are going away still.  He may have to take a few calls and reply to a few emails but he will then be claiming those days as non holidays.  Funnily enough no one else at a senior level seems to get their holidays interrupted so much, hmmmm. So we are now back to wet weather and very windy at the moment.  Quite a few trees, or large branches of trees, were broken by the weight of the snow and with the strong winds a few more have suffered so its a bit precarious on some of our country lanes.  Keeping safe! Take care, have a good weekend whatever the weather or whatever your plans are. Nicky xx ... View more

Hi wizzyden Another long term survivor here!  Primary in 2003, bone mets 2008, liver mets 2013. I just wanted to say that I do know of a lady with primary BC who went on to develop another primary in her other breast, this new BC was a different receptor status to the first primary.  The first primary was HER2+ so she was treated with Herceptin, the second primary was hormone positive so she is now on hormone treatments.  She has not gone on to develop secondaries but it shows that two different types on BC can develop even whilst on one type of treatment. Good luck with the biopsy results and I hope you get the best case scenario with results. Nicky x ... View more

Hi mo It's good to see you posting but sorry to hear that the ablation knocked you for 6.  When you have the energy please do add to the Liver ablation thread, if you can find it!!! The new format is rather annoying (I suppose until we get used to it) so threads have been combined (such as the one of 'Inspiring Stories') which has pushed a lot of threads much further down the pages. As to chemo, I've had FEC but not heard of 'E' on its own, or maybe once in the 11 years I've been on here.  As Debs has suggested did your onc mean Eribulin?  As I've had Capcitabine and Eribulin I can compare the side effects and effectiveness if you want. At the moment a lot of Cape Crusaders are suffering with side effects which is such a shame as overall it is a very well tolerated chemo.  I think it is a case of getting the right dose and hoping that even then you don't suffer too much - easier said than done in some cases. Good luck whatever the next step is. Nicky xx ... View more

Hi Sorry you havent had any replies or help yet.  I did type a reply on Wednesday but this new format of the forum lost my post, grrrr.  Since then I havent had any time to log back in and re type it. Here goes (I'll try and remember what I put and, btw, I do have liver mets so have some experience of them) From what I have read/heard some liver pain can be caused by the membrane surrounding the liver getting stretched which is probably why your wife was on steroids as they tend to help.  I am not sure what other trearment she is on as you dont say but I would suggest she/you discuss her pain with her oncologist.  This might mean changing to a different treatment or starting one. As to other procedures these tend to be done if the circumstances of her liver disease is known. Too many lesions then certain things can't be done and if they are too big then other procedures can't be done, or if they are not accessible.  Your wife's overall health, and current treatment plan would also need to be considered if any targetted procedures can be done.  I'm sorry I can't help with anything else but I just wanted to reply with some information that you may, or may not find useful. I hope she improves soon and please cpome back to ask any other questions or get further support. Nicky x ... View more