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

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

Bump

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.

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

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! <3 :slight_smile:

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

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

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

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.

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

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

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

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

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 breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/spotlight-secondary-breast-cancer?utm_source=MM&%3Butm_medium=CandV&%3Butm_campaign=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

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

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

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

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.

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

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.