I’ve been living with bc+bone mets for more than six years, and am so grateful for my secondary BCN (clinical nurse specialist).
All of us need support - a primary BCN with extra training is better than nothing, but a dedicated secondary BCN is a wonderful resource.
Lucinda’s comment on the Bone Mets thread breastcancercare.org.uk/comment/2083307#comment-2083307
has prompted me to start this thread.
What do others think about campaigning for more secondary BCNs? Is it realistic? Who should take responsibility for the campaign, us patients, the charity BreastCancerCare, maybe Macmillan… or … ???
To be honest, my first thought was to email BCC’s Secondary team (the name Clare Kemsley comes to mind) drawing their attention to Lucinda’s comment. But when I look on the “Secondary” section of BCC’s website, there is STILL no dedicated email address given!! (I did find this one, secondarycampaigning@breastcancercare.org.uk
on this page breastcancercare.org.uk/secondary-breast-cancer-awareness-day-0
again, better than nothing) - so maybe we first need a campaign for an easy-to-find “secondary” email address on BCC’s home page!
I agree that anyone with secondary cancer (breast or any other part of the anatomy) needs the support of a clinical nurse specialist.
I am not sure whether my BCN is a primary one who looks after secondary ladies too or mainly focussed on secondary ones. I suspect she spends more time with secondary ladies - I only saw her occassionally during my chemo (mainly for PICC line issues) and there is another one (or 2?) who specialises in radiotherapy and sees people regularly during that. I know that (so far) I feel well supported and know that I can get hold of a nurse specialist whenever I need one.
I suspect MacMillan might be the best people for a campaign, as then it would be wider-reaching (all secondary cancers) and would therefore get more support. I know that they did some of the initial funding for my BCN.
My secondary bcn has been the most wonderful resource. She is available either by phone or email and makes time to see me at appointments. She has supported me a huge amount since my diagnosis. I was suprised to find a secondary bcn was not available for sx ladies. I am based in the RM and have been impressed with the level of care and support. I would be like to find out how to make this into a campaign…its so important to have a point of contact in difficult times.
I guess it will all come down to that word ‘funding,’ however raising awareness maybe a start.
Mel
I have had bone mets for 14 years now and our hospital introduced a new post for a BCN specialist who looks after patents with secondary breast cancer 3 years ago. When I heard that this post was now in place I telephoned her and introduced myself and offered my services if she needed anyone to speak to newly diagnosed patients with secondaries. She is always at the clinic when I go to see my Consultant and she came looking for me in the waiting area on Friday when I was there and said if I needed to speak to her after I saw the doctor she wwould still be there.
I have telephoned her many times. Just left a short message on her answerphone and she always calls me back. If I see my Consultnat then go home and a question crops up in my mind I can phone this BCN to ask if she can find out and answer. If she doesn’t know she will speak to someone for me and find out. I had a complaint recently but did not want to make a big fuss but did not want another patient to go through what I had experienced so she spoke to the relevant nurse on my behalf who larter telephoned me to talk it over. I think the secondary BCN is a very important person to have available because when you are first diagnosed with BC there is lots of help about but 14 years ago there was no Breast Cancer Care forums and information was few and far and it was a very lonely place to be. I was scared but now I know where I can go for support and answers. Hope this helps, Val
Hi, I have not come across any dedicated secondary BCNs at my hospital in the last 5 years which is a huge gap in the care of secondary patients. It’s OK to have BCNs who know a bit about secondary BC but its woefully inadequate. In fact when I wnt for my first clinic the other week, to start on Xeloda, I asked for a DS1500 to be signed as I’m having problems with DWP, but my onc and the BCN looked completely blank and had never heard of it! What secondary BC patient hasn’t heard of it? So you would hope the professionals had!
more and more cancer patients are living with secondaries for many years, it would be nice to have a nurse that understands all that it entails!
Nicky x
As you know, I don’t have a secondary bcn as they don’t exist here. Even a primary bcn doesn’t have contact with secondary ladies unless they pro-actively ring them to ask something, in which case they would be referred back to onc. Abandoned feeling. I know some of this is due to the fact that until very recently there has been no collation of figures for secondary ladies (and men) so they can’t allocate resources if they don’t know what they are dealing with. Not to mention the old hot potato of funding…still a bcn with some extra training for secondaries would be a start.
Buffy are you based at Sutton or London RM? I know MrsBlue has a good experience of her bcn/clinical nurse specialist but I am at the same hospital and have hardly ever seen her. I have even made it known in the past that if we had one I would like to meet her. She did make a point of catching up with me at my following clinic but that must be around 3+ years ago!
Hi Dawn like you I am at Sutton and had not had a lot of contact with bcn until recently.Since starting everolimus/exestemane I have had various side effects and she has been really helpful.She was really good when my leg pain started a few weeks ago, phoned to check how I had got on at A&E (they thought it might be a fracture) and phoned a couple of days later to see how I was getting on. At least you know she is there if you need her.
Hi, I am based at Sutton. When I was first diagnosed I was given her number and email. She also met me during my first meeting about my initial treatment plan. I have contacted her many times about various things…and she either referred me on to someone else or dealt with the concern herself. As I said before contact either by email/phone…which is programmed into my mob or face to face when I need to speak to someone. She has reassured me,:given support and explained things again if I wasnt sure. They are sorting out my treatment plan at moment and I have been there for chemo every 3 weeks…so possibly am in contact more often. Anyway, for me she has been really supportive, is very knowledgable and for me has been there when needed. She has certainly always made time for me.
Off to watch the penguins now,
Mel xx
I think my problem is that I have been there so long I am like a bit of the furniture!!! I have been coming every three weeks for the past 11 years since being dx with 2ndaries. Which days are you there Mel? Lynn you come such a long way. What means of transport do you use?
Hi Dawn, I am there Fridays popping in tomorrow for zometa…as it wasnt ordered with my last chemo. She isnt there on Mondays. Perhaps we will bump into each other some day soon x
I have a wonderful BCN who deals specifically with secondary patients and works very closely with my oncologist. She is fantastic, absolutely cut out for her job and has phoned me straight back on the two occassions I have had to contact her. I see her 4 weekly as part of my appointment for zoladex and zometa. She administers my zoladex, always has time for a chat and to discuss any issues I may have, orders the prescription for the zometa and has in the past given me scan results if my oncologist appointment is too far away for me to tolerate the scanxiety!! I am disappointed to hear that some of the other ladies here don`t have access to this invaluable resource, our situation throws us many challenges and it is important to have a point of contact for support and information - in addition to the BCC forums of course!!
Janice x
Morning Dawn
It is a bit of a way,but worth the effort as I was so unhappy with previous treatment.Just felt I was a drain on their valuable resources and needed more than just sympathy.I travel by car,my OH drives me.We do go to a lovely pub on Epsom Downs for lunch so it breaks the journey and makes it a sort of a day out.
I’m being treated in Wales and there is no Secondary BCN at my cancer centre. In fact, when my cancer first reappeared 6 years ago, I wasn’t even put back in touch with a Primary BCN, just left out on a limb outside of my onc appts… Which is when I discovered BCC!
Having said that, my onc is always willing to spend time explaining things to me, answering all my questions, etc. during appts. and I feel confident that I could call her with any queries or concerns I had between appts.
But it’s so very unfair that there are still such huge differences in standards of care and available treatments, depending on where you live and where you’re being treated. It was just the same when I started treatment 10 years ago and, shamefully, things don’t seem to have improved at all in that respect.
Hi Mrs Blue, thanks for flagging up this topic. We recognise that access to a secondary breast care nurse is a hugely important issue, and we’re calling for this as part of our ongoing ‘Spotlight on secondary breast cancer’ campaign to improve standards of care for people living with secondary breast cancer. Find out more about the campaign at Search Results | Breast Cancer Now
Another strand of our work in this area is our new toolkit for nurses who care for people with secondary breast cancer. We’re currently promoting the toolkit to healthcare professionals - please flag it up to your nursing team if you can. The link to the toolkit is Search Results | Breast Cancer Now
The best way to get in touch about secondary campaigning is by using the secondarycampaigning@breastcancercare.org.uk email address you found on the Awareness Day page. You can also get in touch using one of the general contact details (our switchboard and Helpline) which are on the bottom of the secondary services page.
For details of the different ways you can join the Spotlight campaign, please download ‘Taking action together’, our short guide to campaigning on this issue. Find it at Search Results | Breast Cancer Now
Thanks to all for sharing your experiences. It’s really useful for us to hear about the different experiences of people living with secondary breast cancer around the UK. If you are not already a Breast Cancer Voice, please join to keep up to date with our campaigning and awareness-raising activities and to have your voice heard. Register at Breast Cancer Voices | Breast Cancer Now
Many thanks
Clare Kemsley
We have just recently acquired a secondary breast care nurse. Our primary team do a fantastic job but Sheila is knockout. She acts as a liaison and if I need her she’s there with answers or knows who to ask. What a valuable asset. I’m in Coventry and the care I’ve received has been wonderful. Dx May 2010 with secondaries from the start! I think every centre should have secondary specialists. My issues are different to primary ladies. There is no cure, but there is hope to control the beast for as long as possible. Sheila helps me to steer my way through. She doesn’t deal in platitudes which I find unhelpful
It speaks volumes about the lack of provision here in Lanarkshire that I had no idea there even was such a thing as a secondary BCN. I’ve only briefly met a BCN on the day of my original diagnosis and have had no contact since. I have an oncology nurse specialist who sits in on clinic consultations and is the person I call with all my questions about treatment. She’s the one who referred me to BCC. It’s sad that provision for us secondary ladies is so patchy as we do have very different support needs.