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

[StickiVicki]

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!

[NIM41]

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.

[Guest user]

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

[Historygirl]

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.

[sarahlousie]

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

[applestreet]

PS..last time I went for my check up..I saw said nursey.."call me anytime"..nah I don't think so missus!!!

[applestreet]

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!!!..one 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..

[StickiVicki]

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

[Lilac_Blue]

It gives me a heavy heart to read of our secondary sisters being blanked when reaching for BCN support. A week after my MX/recon I was told that my BCN support had come to an end as explained the cancer had been surgically removed and and my PS care is what I was to look towards -- this offered by a speciality BCN at a private hospital. I too felt adrift and we are not. This is where BCC comes in with it's aray of services and does such a terrific job! I made some worried calls to the help line and have always gotten 100% support, help and direction over the phone. We have an impacted system that is overloaded with 1 in 8 women seeking treatment. I am concered with women who rightfully need and want one-to-one BCN secondary care in the local that they reside. I don't know what can be done to shore up this issue -- that needs to be addressed in what I have read so far on this thread.

[Tournesol]

I think I've had more contact with a BCN since my secondary diagnosis, but have never had much proactive help - it's been mostly a way to check something with the consultant, who I can't contact directly. Although she did take me off for a 'chat' after an upsetting appointment once, which was really appreciated at the time. My usual BCN has now left to become a secondary BCN at another hospital - I wish we had a specialist secondary BCN at my hospital as the one I have met from the Marsden seemed good.

Tournesol

[Guest user]

I was diagnosed (secondaries from the outset) in April 2012 and have yet to meet or speak to a BCN. She was on holiday when I attended the breast clinic for tests and results but they gave me her number as a point of contact. I called her about a problem during chemo last summer, left a message and she failed to respond. I have to agree with others who have posted that I also feel as secondary BC patients they are not really available to us.

[Guest user]

Mines the same still waiting for a call from a year ago was a big shock the lack of care because I had cervical cancer 8 years ago and my nurse was amazing I was terrified and she was there every step of the way even coming to my Scan with me I've just had my ovaries removed she was Checking on me and rang with my results can't praise her enough the bcc nurses could do with a few lessons from her

[MaraUk]

Hi vicki & lucinda
Just to let you know my breast cancer nurse did call back. We had a long chat about the woeful lack of support for secondary ladies even more so o those dx straight out like myself.
i think Vicki is right we need an advocate I am not sure how we go about this. But my first step at the moment is to write to myhospital trust not to criticise my care team because thy are brilliant and are well aware tht there is little provision ,but to labour the fact of the lack of secondarycare experience and support medically and mentally is just not there.

Maybe if we all take this stand and also remind BCC how important this issue is. My hospital alone has a least 100 secondary patients 10 percent dx straight away.
Mara

[lucinda]

I go to Royal Marsden in Surrey for my treatment and we have a clinical specialist nurse.She always phones back if she is not available, and has always sorted any problems I have. I must admit these have always been medical specific problems and I have never been offered emotional support. I know they have other sevices available but as with all things bc related these are conveyed to primary patients, it seems to be assumed that if you are secondary you had primary dx and it is overlooked that many of us were dx with secondaries from day one. I have been having my treatment there since I went for a second opinion and decided to continue my treatment there, and as I have a long journey I have not really looked into what is on offer.
I meet up with a few secondary ladies for lunch and a chat locally, I find that I get more support from my bc friends than anywhere else. All seems so much better over a drink and lunch (pudding compulsory) with a few laughs and sometimes crys as well.

L xx

[StickiVicki]

BCNs don't deal with Metastatic Breast Cancer patients, and there are very few hospitals with specialist nurses that do include 'Secondary' breast cancer. One of the reasons I dislike the term Secondary as that is the way we are treated and it makes it sound as though we are less important. I believe there is a hospital in Scotland that has 3 Metastatic breast cancer nurses. At my hospital they didn't even take any notice of me when the still thought I had Early Stage Breast Cancer.
Ideally we should all have a Clinical Nurse Specialist or Key Worker ... I am going to ask my onc about this next week because I have never had anyone support me at the hospital. The only positive thing they did was take part in a trial about Mindfullness Meditation which was actually aimed directly at those with MBC and I was able to do the course.
This is one of the things that Breast Cancer Care seem to be campaigning about - see http://www.breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/spotlight-... but to be honest I don't see that there has been any real progress in the couple of years since I last saw this. I had come back to BCC to see what is being planned for Pinktober, but there is very little about Mets. We should be the focus of the entire month, and not just one day. 30% of those with Early Stage BC will have a progression, and 10% are diagnosed at Stage IV and yet internationally only about 3% of research funding goes to Metastatic Breast Cancer.
Anyone interested in Metastatic Breast Cancer Advocacy in the UK?
Vicki xxx

[MaraUk]

Thanks elinda I finally got my answers but from the onc still no phonecall from the BCN.
The onc department are still insisting that they should be there for me. I am lucky I have a good network of friends and awonderful family. I am concious that many others are not so lucky and need the support?
Thanks everyone at least I know it's not personal .
Mara

[elinda45]

Hi Mara

Of course you want and need support through all of this.

I had a primary diagnosis and had little contact with the breast care nurses especially initially. Later, I found them great at things like helping me to sort out prostheses but absolutely no good with regard to emotional support or any form of support through chemo or advice on more general issues. I think some of them have an old-fashioned nursing approach such as okay with advice on dressings, prostheses, seromas etc but everything else is down to the doctors or someone else. I know from the forum that others have breast care nurses who are extremely knowledgeable and gives loads of help and advice. You'd hope that all breast care nurses would be able to deal with emotional side of things and offer support and sign post to other services but sadly that isn't the case.

I would say that you may need to look elsewhere for the type of support you need. Keep the requests to the BCN specific and practical. I'm not sure the best place for the support - I'd give the helpline a ring or e-mail the 'ask the nurse' service at BCC. You may also want to consider counselling at some point. I'm going to get some through my GP practice.

All of that said, I don't think it's acceptable that they didn't see you after your op or come to the Onc appointment as they said. This may be nothing to do with your secondary diagnosis but more to do with what's going on with them - workload, apathy - who knows. Definitely worth mentioning at the next appointment you have with your consultant.

Do persist and maybe leave a message with your specific question or arrange to make an appointment to see them. It is their job to help you and that's what they're paid for afterall.

Elinda xx

[JulieD]

Like Juliet above I had a great BCN with my primary dx but when I got secondaries 3 years ago I asked about BCN support and was told they didn't have a specialist and the BCNs didn't feel they could deal with me! I was left to deal with the Oncs secretary who at the time was very helpful (she's gone now). I did manage to find one BCN who would reply to e-mails. Apparently there is now a specialist nurse but I've never been introduced to her or had any contact, it seems we are left to fight our own corner, Have you tried Macmillan, also the helpline here and of course the forums are great. Best wishes

[juliet66]

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

[wintersocks]

I really feel for the ladies with poor care from their BCN. I would just like to show how good practice can and should be.
Following, dismissive comments from a doc in clinic, I saw my BCN and explained that I have little faith in him. I said I would not see him again. I explained to her my intense fear and mistrust of the med profession after having previously been misdiagnosed wiith an illness (for a 10 year period) that left me extremely ill with a toddler and a newborn to care for.
She came to see me in my home, heard all my issues and listenend whilst I sobbed. She stayed for over an hour. She said she would make sure I did not see the consultant I did not like, she would make sure I got with the one I trusted.
I mentioned pain in my hip to her, she said let's get a scan. 2 days later that came through. I had that yesterday at 2.30. half an hour ago, my nurse called me to say it is clear (yay, yay, and yay again!!)
I do know from my own terrifying experiences, you have to ask and some times fight for good medical care. I find it completely and emotionally draining to do so. But when I do - things happen. scan reported and deliverd to me in less than 24 hours.
I feel cared for.

[Amber_D]

Since my diagnosis in January I've had one email in last 5 months from my BC nurse. She was supposed tbe visit me when I had my surgery but that never happened. it would be nice to have had some support as she has no idea if Iam coping or not. This would be a lonely journey if it wasnt for all the lovely ladies on this forum. Together we will stay strong and support each other through bad times and good. X

[MaraUk]

Hi everyone thanks for your answers.
Philomena
they were when I rang I checked their time tables.
The last time I head from them was at my last surgeon meeting when they said they would be there for my op and call me at home neither happened. They were supposed to be there for my first onc appointment again a no show.
By the time my op happened they knew I had a double whammy dx. I think that is when you fall of the list despite this being the most devastating time emotionally. My district nurses and Gp have been really supportive so have my great team at the hospital.the weakness in my case is the BCN nurses.

I think this is why I was so aggravated. By the BCC body image campaign. They need to find out more a bout our experiences at dx and support afterwards. Not just as history girl said to be offered a feel good day. Just shows how little they deal with the devasting dx of secondaries.
thanks again
Mara

[Historygirl]

Hi Mara

I hope that the BCN not returning your call is just some kind of communication breakdown as it seems lots of people all over these boards have excellent relationships with their BCNs. OK, that's my charitable bit over with - now on to my experience. I had the double whammy diagnosis nearly 18 months ago and the BCN has been pretty hopeless. In the end I took to emailing her when I had queries so there was evidence that I had tried to contact her, this was successful to a degree. i got replies but they werent particularly helpful. I know some hospitals have specialist BCNs for patients with secondaries. I wish mine did. In the early days of diagnosis when I was on my knees with anxiety her only suggestion was that I attend a Look Good Feel Better day. Ye gods!

i now tend to circumnavigate the BCNs and just go to places where I'm more confident of receiving timely and helpful advice (in my case the nurses on the chemo unit, the research nurse - as I'm on a drug trial, SOME oncs/registrars, these boards, BCC help line etc).

Hope you have better luck. One phone call in five months probably makes you the most undemanding patient ever, you certainly deserve a reply!

Della x

[Morwenna]

I was introduced to my "nurse navigator" on my first visit to the breast clinic. I managed to contact her shortly after that, when I was stressing about my first surgery. After that I never saw nor heard from her again. She never contacted me or saw me in hospital for my second surgery (total mastectomy), and I waylaid another nurse navigator who was visiting the lady in the next bed, and giving her all this support plus her "softee" breast form. I got mine from her too, even though she said my own nurse navigator should be coming to see me. She never showed or contacted me. I think she is a dead loss!

In fact, the only complaint I have with my whole team is the lack of nurse support. I don't have a good relationship with a specified cancer nurse, as my oncologist's nurse doesn't see me as I am on a study, so the "clinical trials" nurse sees me in clinic, but I've seen different staff, and I don't get the impression that anybody apart from my onc has any idea what has been going on with me or where I am in my treatments.

Luckily my best buddy is a nurse at the cancer centre, so even though she works more with GI cancer patients, she is my own private cancer nurse and "go-to person", bless her cotton socks! ❤️ 🙂

[Philomena_b]

I agree with Jennifer, at times I have had to phone a few times as the BCN tend to work different days and do have a heavy case load. You should also have there page number if you feel it ismore urgent. I don't think it is just you, I have had a tough job getting hold of my ONC nurse, but assume it may be down to not enough nurses. Also they have a great help line on here. Hope this helps xx

[Guest user]

You should ring again if you don't get a response within a couple of days. Or call the consultant's secretary and ask if there is some problem - maybe the BCN who deals with you is on leave or sick or something.

[MaraUk]

Bump

[MaraUk]

Hi everyone
after my op and my double whammy diagnoises. i have not seen or heard from the bcc nurses. I know people who are primary that have contact all the time. I feel totally abandoned I have a wonderful team apart from this weakness.
i had to ask a question so tried phoning as yet. A am still awaiting a reply. Onc and surgeon both have said they are there for support obviously the nurses do not see it this way. I know they are very busy but one phone call in five months is not a lot to ask.
Please let me know if it just me. I am so glad I found this board for support and information.
Thanks
Mara