Breast Cancer Now Forum

I know on the trials that you needed to have had a taxane to get this drug. Does anyone know if that still stands ?   Thanks,   Julie x ... View more

Thank you so much for posting this. What an amazing woman, definitely a life well lived. Inspirational. RIP Marilyn   Julie xxx ... View more

So sad to read this.   RIP Marilyn   Thanks for letting us know Belinda. Hope you are ok ? Julie x ... View more

Ah Wayne, Lovely to hear from you but am so sorry it is in such sad circumstances. You have obviously been such a rock and support to your lovely Maryanne. She was blessed to have you, as you were her. Rest in Peace Maryanne Julie xxx ... View more

Well said Val. You have not lost your way with words. I feel the same. Without my mobility component I could not get to my frequent hospital appointments ( as it is I still have to pay extortionate parking) and I could not really get out and about anywhere.I definite;y could not get to work. Without my care component I could not manage to work at all. We could not cope with this financially as a family. I am managing to work part time. If lost, I would definitely have to claim ESA ( which at present I do not). So my DLa enables me to carry on working ( and contributing) which I want to for as long as I am physically able. I also feel very strongly that DLA in some way compensates for lack of a future State Pension. My job can involve benefits and I can represent people at appeals. There has definitely been to a sea change over the last year. Decision Makers are increasingly questioning DS1500's as being correct, even when written by a Specialist. I would greatly appreciate some guidance from BCC on all of this. Body image is irrelevant to me. I just want to live and be there for my family for as long as I can. Julie ... View more

Marina, Do as Val suggests and get some supporting evidence. However beforestarting the appeal process I would suggest that you ask for a 'Reconsideration', a statement of resons, copies of all the medical evidence used and a copy of the form ( if you did not make one). You will be able to see exactly how the decision maker reached their decision. If they sent for any medical evidence and if so was it accurate, current and did it reflect your needs ? If it didnt then you can send in current medical evidence ( if you get any) but also explain how this disease has a monumental all consuming impact on our lives. Detail your diagnosis ( even if you did before), how it impacts physically and emotionally, your worries, fears and recent medical history. A reconsideration is a second bite of the cherry, before an actual appeal. Your case will be reviewd by a different decison maker who may have more understanding. A tip.... time will be running short, get your letter planned and get any other evidence as soon as you can (GP, breast care nurse, consultant, therapist etc). If this fails, still appeal but take your paperwork to an organisation that may be able to help you; one of the DIAL organisations, Welfare Rights or a cab. Wishing you luck. Julie ... View more

I had a fantastic relationship with my BCN with my primary BC. Since being diagnosed with secondaries (5 years ago) , I have yet to see her, or anybody else !! Not through lack of trying. It is not unusual. Although a few areas seem to have BCN's that give advice about secondaries, these are few and far between. Julie ... View more

My periods returned to normal on Tamoxifen, despite 2 lots of chemo. Monitor the zoladex closely. It does stop most women's periods but there are a certain proportion of women that it does not work for. Seemingly surgery is the most viable option. Julie ... View more

I am more than aware that a lot of decision makers are questioning the use of DS1500's, particularly for just bone mets. However the 6month thing is one of reaonableness and so is open to interpretation. A few oncologists interpret it as being ;that death cannot 'reasonably' be expected in 6 months( if your condition stays the same) . However another interpretation is that once you have secondary bc, particularly in the major organs, there is no clear way of indicating life span (response to treatment etc). We all know that responses to treatment can change as can the pathology of our tumours. They do vary so much in terms of aggressiveness etc. Therefore for some people it is not 'unreasonable' that life expectancy could be 6 months ( hopefully more). I have had my special rules DLA renewed and at times I have felt guilty. However I know that I will not be around to claim my state pension. I have worked all my life, what will happen to those contributions ? Also because of DLA i have been able to cut my hours and carry on working rather than claim sickness benefits. Without my motability car I could not get to work in the first place as public transport would be too painful and too much. Julie ... View more

Hi there, I am totally with you on the way that you feel. I am no expert ( bar 13 years in this game) so I can only share my experience. The diagnosis itself is deeply traumatic and after months of battling with anxiety and a determination to avoid antidepressants, I finally saw a consultant oncologist who informed me I was suffering with post traumatic stress disorder. I was prescribed a low dose anti-depressant ( alongside tamoxifen). I cant say things were a bunch of roses but they became tolerable for over 6 years. Any cancer diagnosis will result in anxiety and depression at some level. I was eventually moved onto femara and zoladex. It was the zoladex that was a real problem for me. My behaviour and thoughts were so strange and intolerable, I even had episodes of thinking and seeing bizarre things. I would scream, shout and totally embarass myself in the street, like a much more super exxagerated PMT. After a few months I went to my Onc and was told that my reaction was very rare but it did happen. The symptoms subsided as I was taken off it (read the sisde effect label). I am not advocating for you to stop it but to see your oncologist. I had to be put back on it over a year later but that time I was very closely monitored. I could have had my ovaries removed but chose instead to have cognitive behavioural therapy, reflexology oh and an increase in anti-depressants. I hope this helps a bit. Julie ... View more

3 years, God bless you Deb x ... View more

Dear G, Sorry that you have had such crappy news. I cant help I am afraid ,but you do need some help. Do you have a mac nurse? Ringing the BCC helpline helped me when i was in crisis ( think shuts at 8 ). Are you a member of out secondary group on facebook ? Apologies if you are but I am not good with matching BCC names to real names. I can't say that it is a barrel of laughs on there at the moment but there are people in similar situations. Julie x ... View more

I did not think that this was all about Bernie Nolan, I thought it was all about 'Living with Secondary Breast cancer'. Over the years we have frequently mentioned lots of women who have had the misfortune to join this club. If she wanted to be in la la land regarding her original diagnosis then that was her choice. However there will have been thousands of ladies ( and men) with a secondary diagnosis, biting their tongues. As has been stated, the 'battled with', or 'beaten cancer' metaphors wear a bit thin, in fact they become abhorrent when you are 'losing the battle'. I have been using this site almost as long as it has been here. This argument has continued relentlessly. Rather than having completely separate forums, BCC decided to include them together but clearly labelled. If you do not want to explore the reality of secondary breast cancer, just do not read it !!!!If you want to stay in your bubble that is fine. Once again this thread is under a secondary section................ I do understand, in the early days I would avoid the secondary section at all costs. It was somewhere I did not want to read about. I did venture in at particularly dark times and it was good to know it was there. On my secondary diagnosis, the site was ( and is) invaluable. As we are mainly sidelined by the media, Breast Care services and sometimes our Oncologists and Family; we need somewhere where we can find truth, honesty and real life experience. Lizcat was not being insensitive to Bernie Nolan. Lizcat is one of the most sensitive and caring people I have had the pleasure to meet. She is hoping, as am I that such a well known and popular celebrity having a secondary diagnosis, may actually highlight the forgotten bunch that we are, the dark side of pink and fluffy. Maybe some recognition will be given to our diagnosis. We all try to lead full lives and we are aware that cancer isnt everything....Just sometimes, when we feel that it is, it is good to be able to go somewhere where people understand. julie ... View more

It is our customary tradition to light a candle for lost friends on 'Secondary Live Chat' on a Tuesday evening. At about 9pm tonight we will light a candle for Miao. Join us if just for a minute. Julie ... View more

RIP sweet Miao. A lovely, kind and funny lady. Taken far, far too soon. We will miss your innocent, fun loving take on life. Not fair. You had a stong belief and so will now be resting in the arms of the angels. God bless you Miao. Julie x ... View more

RIP Eltiks . Another life taken too soon. Julie ... View more

I am sorry to read this and also that nobody has responded. The sites is not as user friendly anymore.terrible news. Another woman taken far too soon. RIP Hope 15 x I see people have responded or at least I can see posts now. ... View more

Hello Belinda, I hard a cargo pant cull and now only have about 6 or 7 !! I thought it was just me with Monsoon. If the tops fit me around the tummy they bag around the shoulders. 32 shirts. Well done. 🙂 She still cannot decide on the dresses. Neither can I. Oh and there are another two arriving Lovely to chat to you Belinda, Julie xxx ... View more

My name is Julie and I am a secondary gormless shopper ( long term see previous). It has been some months ( maybe a year)since my last confession. I will list (otherwise may take too long). These are only the items I can recall at present. 8 prom dresses for my daughter ( off ebay, all new)-all of which she hates ( but of course i can resell them) 😞 A blackberry playbook ( for no apparent reason as we have a family ipad) A camping hook up socket thing ( not been camping for about 8 years) Another new Monsoon tunic dress ( that doesnt fit properly) to go with the other load that either dont fit or I never wear ( Ebay so that makes it ok ) !!!! A gastric band hypnosis cd ( ha ) that I have used 2x and seems to have made me eat more Another pair of walking boots ( already have 3 and cannot really walk more than a short distance due to mets in my spine) Oh dear, credit card maxed out. ... View more