Role of breast cancer support nurse

I’ve had a pretty similar experience on one hand in that I haven’t actually spoken to my named cancer breast nurse since my diagnosis, she was amazing then I have to say and I was delighted I’d struck lucky. Since then I have not heard from her personally but when I’ve contacted the breast care team they have always responded, usually same day, sometimes in hours, often quicker by email tbf but they have always got back to me. I have also called the chemo nurses occasionally and they’ve been equally responsive. So I’ve been overall happy because I’m still getting support but it doesn’t sound as if you are? one mitigating factor could be that I know from a nurse friend that they are being dragged not only from department to department but covering  hospital to hospital trying to balance staff absence through, COVID, self isolating, increases in admissions so I think some are really chasing their tales. My last chemo was delivered by a nurse from another hospital because there were shortages so it may be that? I have found the Macmillan helpline to be a total god send for emotional support and guidance, I was reticent to call them but they’ve been invaluable x

Thats good to hear. I was reluctant to call Macmillan line as didnt want to bother them but find my breast nurse not helpful. She only works 3 days a week and is a little too softly spoken for me and airy fairy. I've had a tendency to call when she's not in. As you say I think its more the emotional support as healing well. Yet to face radiotherapy as appointment is still 10 days away and time feels like it dragging. Decided I'm not very patient.i have support at home from family and partner but have had to do all appointments on my own due to covid restrictions so it does feel quite isolating at times x

Exactly the same as me Tired Minion. I've emailed BCN, about radiotherapy - no response. Had good response from Ask an Expert on this site though. Hard not to feel a bit fed up.

Hi had op just over a week ago, was asked when I was discharged whether the Breast care nurse had come to see me, I said no and due to general anaesthetic wasn’t really very aware of things. By Wednesday under my arm was very swollen and very sore and I had a weird veiny rash that spread underneath my boob. Rang the breast nurse engaged constantly, then phoned GP, eventually got in contact with breast care nurse after trying again and it constantly ringing for half an hour and she told my it was probably a little bit of inflammation, she wasn’t worried she said, well I was worried and had antibiotics from doctor who said it sounded like infection. 3 days later rash gone and under arm swelling has gone down.

It doesn’t exactly fill me with confidence with regards to Breast care nurse, when you’re  first diagnosed you feel like you’ll have all the support you’ll need. I understand they must be busy but you’d think they would check to make sure you’re ok, especially straight out of surgery.

I haven’t even met the Breast care nurse as I only met the one in the assessment centre when I was diagnosed.

I was diagnosed in 2015 and was lucky.  I was diagnosed at screening clinic and after surgeon gave me diagnosis the BCN offered to come out to my house 2 days later to talk to me and family.  We had a few questions prepared as we'd had time to digest news.

Then after surgery I was allocated hospital BCN.  I met her a coupe of days after surgery when I went for wound check.  She told me she was for the next 5 years my advocate and to call her whenever.  When my results from surgery biopsy came through a week or so later her colleague, also a BCN, rang me at 4pm on Friday to say that my BCN had asked her to ring her ladies if results came in as she they know we all wait anxiously.  She was on leave and it was such a lovely thing to do.   I did call  on her a couple of times and even 3 years later when I had a biopsy on good breast and was getting conflicting results and delayed appointment follow up.  She was on leave but the other BCN spoke to me and sorted things out and got me a cancellation appointment.  My BCN never belittled my fears and instilled confidence in dealing with any issues - my skin broke down under my breast during radiotherapy.  I felt so confident with her I shared my DIY solution to wet, broken, smelly skin under my breast - a panty liner.  She had given me special dressings previously but they stuck to skin and pulled more off.  The panty liner just protected and didn't stick.  She laughed and said it was a first.  

I've been moved hospital for radiotherapy as they don't do it at mine. I'm off to the Christie at Manchester which is renowned. Met a friend who had treatment there and she said they were wonderful. Their website is very helpful with videos and talk about what it like. Worth a look even if you are not being treated there. They explain things very well and i got sent a booklet too. I'm very much the case of I like to know as much info as I can before hand. 

Thanks. Me too. I'll have a look at The Christie's website.

I am sorry to read these mostly negative posts about the BCNs and I have have to say that I have had a similar experience.  On the day of diagnosis, which is the only day that I have seen her, I asked her about the breast cancer survival rate and she said she did not know.  She sent me to the wrong hospital for my CT scan and had it not been for their kindness I would not have got it done.  I have texted and phoned and left messages but have had no contact at all, so I am not going to bother with her anymore.  It does not sound as though these people take their role very seriously.  What a shame.

I have seen my named BCN only once and that was at my diagnosis. Consultant (a locum, 60+), I found him distant and rather cold...”Yes, it’s cancer, the nurse will take you now”. Definitely not waiting till his patients cry in front of him, the nurse can handle that!

There are a total of six BCNs at my breast clinic, I’ve met every single one as I had some extra clinic visits due to an infection after surgery. Whenever I’ve needed advice I’ve always had a call back from one of them and when my infection began a BCN and my surgeon saw me the same day.

The breast clinic at my local hospital is always busy, I was quite shocked at just how busy. At my very first appointment the waiting time was an hour, waits always seem to be for doctors/consultants, I find the BCN appointments are usually on time.

My first appointment with the oncology consultant was another matter....found her brusque, patronising and totally lacking in empathy. Not stereotyping here but you’d think a woman consultant would “get it”. I was so upset after my appointment that I called the BCN who was wonderful and was completely on my side. Thankfully, on my second appointment it was the oncology registrar and not the consultant.

Don't we breast cancer women go through enough without the “extra” problems???