Secondary Breast Care Nurses

[JMP]

Hi my primary Breast Care Nurse was so supportive and communicative.
There is one SBCN for the region I live in, who works 4 days a week. She attends periodic meetings with my Oncologist as she on the hospital site that day. I do wonder what her role is ? A cardboard cut out could easily replace her..
Even a friend of mine who attended the Onc meeting asked me what she contributed to the meeting ( Nada).
She had the cheek to announce during the end of meeting that her car was on a meter and she didn’t want to get a ticket!! Priorities!
I’m hoping to see a Primary Breast Care Nurse whom I saw at initial diagnosis in 2013, however she’s on sick leave. The Oncoligist agreed that it would be good for me to remain in touch with her.
Secondary Breast Cancer should receive a hell of a lot more funding from the government.

[dragoncarine]

Update, I've just found out that we have a new Secondary Breast Care Nurse at Southampton General. Started very recently doing 3 days a week. Looking forward to a bit more support. Needed help today as I got very confused by hospital admin changes. Sadly my CT results are still lost but at least now several people are trying to track them down.

[Anne30]

It seems another example of a kind of post code lottery. I am grateful that I have secondary breast cancer nurses. I was diagnosed at Stage 4 so have nothing to compare it with. I do think there should be consistency and no one should be told that they are a problem. Hope everyone is okay. I was disappointed this week as after only three weeks of Ibrance my white blood count is too low and I have to have a week off. I’m eating a lot of almonds!

[Kate21]

Think you make a very good point Bon. Have said this before, the bc nurse I saw when I was given my diagnosis, so was fully aware of my situation, told me once when I rang for some advice that we stage 4 ladies were a problem and we fell in a hole as there wasn’t any provision for us, but they were trying to get extra funding, (in a tone that implied I should be grateful for this) but in the meantime I could contact them...there are 4 of them....and they would always help. She was going on holiday the following day but would call me when she got back...that was last October half term....still waiting for that call! My GP tells me what she said was a nonsense as anyone with bc should be assigned a bc nurse regardless of stage, and told me to report it to my Onc. I didn’t because quite frankly I don’t want help from someone who regards us as a problem and as has already been mentioned find my Oncologist’s secretary is far more reliable, and my Onc is happy for me to liaise that way, but then it’s rare I do need to contact her. Now thinking I will ask my Onc at my next appt because if that is regularly being said to patients something needs to be done. 

[bonariensis]

I think our expectations are raised because of the experiences that many of us have had of the support from BCNs that we got during primary treatment. Whether patients with other types of cancer get similar support I don't know, probably not. I know Ff thinks we are making a fuss but it has to be seen against this background of our experiences of primary care.

love to all Bon x

[riversidedawn]

I'm between Bedford and Stevenage. I had private treatment for my primary and no BCN for most of my active treatment. There was one at another hospital 20 miles away who sometimes came to appointments and was great on the phone.

I've been under same surgeon and oncologist for 2 years on the NHS and we have 4 or 5 excellent BCNs, I wasn't aware that there are secondary BCNs too - I'll have to ask when go in for treatment next month.

[Carolyn52]

I'm in Exeter. .no secondary bcn at all . It's very lonely not having that contact. Oncologist secretary is good and helpful.
Primary bcn are plentiful though I think.

[Anne30]

I’m at The Royal Free in London and there are two secondary nurses. They’re not always at appointments but will ‘phone you back if you leave a message. I guess I’m lucky to have them

[judyw47]

Hi Carine, hope everything is good with you. We have one SBCN at QA in Portsmouth but believe this is a relatively new post. There are over 200 patients with SBC!

[Anniej]

I'm in Newcastle and we have a SBC lead who is also the manager at our Maggies centre. She was there for my initial disclosure / diagnosis . There is a monthly support group for us at Maggies, and this wonderful place is my safe haven and my second home. 

[kirky_68]

Hi KitKat

I also attend the Marina Dalglish at Aintree hospital. The secondary BCN is amazing and runs a support group and symptom clinic weekly plus always returns calls same day. Can't tell you what a difference it has made. I feel really sorry for people who don't have this sort of support. I also attend the hospice which is in the hospital grounds. The staff there are lovely. Finally, Marina herself runs a centre for ladies with all stages of BC offering all sorts of great complementary therapies. All in all I think we get fantastic support here in Liverpool.

[nicky08]

Hi dragoncarinne 😊

A good idea to start a new thread, I’ve often seen it mentioned within other threads about who does or doesn’t have a SBCN but that’s not so obvious for anyone to see.

I have had a SBCN for a number of years (I actually thought she was a BCN for quite a few of them but then realised she was trained as a SBCN!) She has been great and very supportive and tends to sit in when I have an oncology appointment. I used to get worried that she was in the appointment as I assumed it was going to be bad news and she was there to hold my hand 😉 I can contact her my phone or email and she will chase up things like results or getting scans booked. I’m at Basingstoke hospital.

Nicky x

[Kitkat23]

Hi

There is a sign in the waiting room at my hospital (Marina Dagleish Unit, AIntree HOspital Liverpool) giving details of the secondary and metastatic breast care nurse as well as the primary breast care nurses.

There is also a breast care link nurse who supports in the community.

x

[bonariensis]

I'm with Torbay hospital. Have often remarked upon the difference in support between primary care and secondary. I suppose other cancer patients experience this lack though I know where we are, the local hospice has nurses that offer support. There is a Macmillan centre attached to the hospital but it says that medical advice must come from medical staff.

[dragoncarine]

I'm curious, can people who have access to secondary breast care nurses tell us which hospital they're attached to? And how many people don't have anyone?

I'm seen at Southampton General and have not met any there.