Breast cancer nurse no reply to my call is it just me?

I wonder if BCC are taking any notice of this thread and maybe would like to suggest some ways that we can campaign about this. We need help now and if one third of those with breast cancer with develop metastases then why does my hospital have three Early Stage BCNs and none for Stage IV Metastatic Breast Cancer? Shouldn’t one of them be for Mets patients? Why the inequality? Why are we ‘secondary’ in every way, even the name they choose to give us. Isn’t part of the stress of MBC to do with the fact that we are abandoned and ignored. When you pass through the Stage IV Curtain you become one of the lost. I have now lived with MBC for nearly 5 and a half years. How much easier would it have been if someone had given me some help? How much earlier would it have been if they had taken my symptoms seriously in the first place?
The medical profession has to stop applying ageist statistics, such as most women get breast cancer when they are over 60. I was diagnosed when I was 47 and even then only went to my GP reluctantly because when I had been before and told her about some of my symptoms and that tests showed that when I had my hysterectomy in 2002 I might have cancer, and that my mother had breast cancer in her early 50s (the cancer marker is also a marker for breast cancer as well as gynae cancers) and I was repeatedly told to go away and come back when things got worse. It did, incurable cancer worse! I feel let down and abandoned by the NHS in many ways and the realisation that they have NO interest now that I have MBC. I only got on the Mindfulness Meditation course because I heard one of the trial nurses talking to other patients. If I hadn’t asked I don’t think I would have been offered a place.
Why is all the support aimed at Early Stage Breast Cancer and the ‘survivors’? Surely someone must realised that it is more difficult to adjust to being told that you have a 2% chance of being alive in 10 years time, rather than the 80% chance that many with ESBC are given? Just someone to explain the treatment options and why a certain treatment has been chosen for you would help. I asked my first onc why I wasn’t being put on chemo, only to be told that it ‘was not appropriate at this time’. ? The only way I felt able to interpret this was that I was considered a waste of space and not worth the cost of chemo. I have had depression since I was a teenager and stopped going to school when I was 14 for a variety. It got worse when I was constantly being told to go away and come back when things get worse by a GP who seemed to think that it was all down to the fact that I am fat and depressed - thanks Doc.
Yes I am bitter about it all. One of the worst things about a metastatic diagnosis is the sense of helpLESSness that you are given when there are so many things that you can do to help yourself. I had to find them for myself because no information was available, and I only had some idea of where to go to find help because I had looked after a friend with Metastatic Stomach cancer to her liver who had been sent information by enlightened friends.
My cancer may not be considered to be curable, but there is still life in me; I still live and breathe and some help would be great.
Vicki xxx

Hi ladies…I’ve read this thread with interest…I am 13 months post chemo but remember the feeling of helplessness that overwhelmed me when I was first dx…I am not…at the moment…dx with anything else than primary but que sera sera…I just wanted to say…I have had a mixed response from my BCNs…I’ve had 3!!! is absolutely wonderful…really helpful and kind…the other two…well…just let’s say Cinderella was better off than I was with them!!!..I know they have a massive workload…I know a lot more ladies have been dx since I was but…really… in Nov last year…before Xmas…of all times…I became depressed…not my usual SAD…really down on the floor depressed…I was getting a lot of pain in my MX side and just wanted some advice…I phoned my BCN…big mistake…it was the secretary that answered…I could hear my BCN in the background so asked to speak to her direct…she just dismissed me…sounded annoyed because I had called in fact…told me I sounded depressed and didn’t even consider my pain…in the end my hubby dragged me off to my GP who was a star…it wasn’t anything sinister just ligament damage to my ribs caused by stretching too far!!..“I’ll call you back” she said…she did…in MARCH!!!..whilst I was having chemo the same BCN told me all about her poorly hubby…honestly!!..I’ve come to the conclusion it is hit and miss…and I’m not paranoid…I know another lady who had had BC and the same response from Cinderella’s sisters…

PS…last time I went for my check up…I saw said nursey…“call me anytime”…nah I don’t think so missus!!!

I’m also not impressed with my BCN, infact she’s been no help since the start of all of this, once I had my surgery she just didn’t want to know me anymore its not like it was just a primary I also was dx with secondaries on both lungs at the same time she didn’t even mention about the secondaries she just didn’t seem to care. I gave up with her and haven’t bothered with her in over a year. SBC is a bitter pill to swollow and from time to time we all need some help with what is a devastating dx. If you have SBC you need support, understanding and care. My partner is brilliant but sometimes he needs a break from all this cancer stuff being assigned a SBC nurse would really help and is definately something worth campagning for. xx

I rang my BCN today asking to see the consultant about a new lump that has appeared on the mx site and severe pain. I was told, as nicely as possible, that I’m now the oncologist’s responsibility (I have SBC and see him every couple of months) and there is nothing further the breast clinic can do for me. Well at least I know exactly where I stand! SBC patients definitely NOT a priority at my local hospital’s breast clinic, in fact I’ve felt like a bit of an inconvenience all along (diagnosed with mets from the start). Rant over.

Hi ladies
reading all your stories takes me back to my experience in 2006 when 1st diagnosed. I saw BCN on the day I was given the news and like others were told “i’m always here blah blah blah” I never heard from her again even though I left numerous messages for her. The only time she contacted me after was when I’d been to see the ONC to be told I was cancer free after having all my treatment 9 months later. I returned home from the clinic to find a message from her asking me to ring her as she had some news for me. On ringing her I asked if the reason for her call was to tell me I was cancer free. Her reply was " oh you know, I wanted to be the one that told you as all I always do is tell people bad news and wanted to feel positive about giving you the good news " !!! Really !!! I could not believe the audacity of the woman. She didn’t give a damn about me, all she was thinking about was herself. Needless to say I hung up on her. Another one from another hospital rang me a week before this to tell me a complety different story about my diagnosis so by the time I got to the clinic a week later I was in a complete state. Turns out she thought 1 was someone else and read out that persons file to me !!! Sadly this has completely put me off seeing any others as it left me with no confidence in them. I was diagnosed with secondary BC last year and still refuse to see any of them. I hope things improve for others particularly Newbies. I had to do all the research on BC myself and still do so I knew what was going to happen to me through the treatments. I have to say a lot was done on here with all the lovely knowledgable ladies.
Han xx

Tea and sympathy at (primary) dx has been my experience. After that, during treatment things were very hit and miss. They would not necessarily return phonecalls, so I found that contacting the bc clinic reception and stress the urgency of a call from BCN worked ok. I don’t think my BCN’s realise that the waiting, waiting and waiting for results is the worst thing. Even if they don’t have the result, a 30 second conversation, saying ‘I haven’t got them but will have them in 2 days’ is much better than just ignoring people.
My BCN messed up my op date - as I had chemo first and then my op - I think they forgot to put me on the list. Only after my husband threatened to come to the clinic to speak to the consultant did the date get moved forward. Care post op was good. But I dread to think how my BCN team would support secondary ladies. I only have my experience to go by, and it was one that could be improved a lot.
I cannot say what the workload of the BCN’s is but I suspect they have to make choices given limited resources.

I saw my oncologist last week and asked who my key worker or specialist nurse contact was and he just said he supposed that was him because there is no such thing as a BCN or key worker for my situation.
Nuff said!