Breast Care Nurses
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Sister
Member Posts: 4,960 ✭
One of the things I've noticed since I've been on this forum are various discussions about Breast Care Nurses - who has one, what do they do, whether they're helpful or not, how to access one... etc, etc. It all seems like a great idea and the couple I have met seem very nice but the actual application of the service on the whole seems to be rather slipshod. The ones I met in hospital when I had surgery were helpful at the time and rang once when I got home to check that I was okay but I was very surprised to find out months later, that they were meant to be my nurses on a continuing basis. I have not developed any relationship with them and, unless I end up back at that hospital, I feel I am unlikely to. I read people's posts saying how fantastic their bc nurses are and I also read posts asking how to access such a service. Absolutely not knocking the nurses, but wonder why it's such a hit and miss thing.
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I guess it depends on how they are assigned. My Breast care nurse, who I rang recently, is attached to my Breast Surgeon and is there to help when I need her.0
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I have the same set up as @iserbrown. She rang me half an hour after I got home. It was good to talk to her.0
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@Sister I have had the same experience as u. My breastcare nurse was fabulous when I was in hospital and when I first go home but haven’t heard a peep from anyone since.0
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Ive wondered about this too. Other than seeing BC nurce morning after surgery ive had to contact them. No one rang me to check i was ok after i was discharged. disappointed
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Just want to give a shout out to the wonderful breast care nurses at the Royal Melbourne Hospital. No question too trivial, no task too big . Lovely, caring women. The oncologists and surgeons there would be lost without them.2
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As I live in a rural area and have metastatic breast cancer I have a McGrath Foundation Breast Care Nurse, she has been not only my nurse but my advocate and friend for two years now,she rings me every week and we catch up nearly every month when she attends out support coffee afternoon, I believe the rule of thumb here is that for a McGrath nurse you have to live in a rural or remote area and you have to contact the McGrath Foundation yourself,the nurses attached to the large hospitals are breast care nurses either employed by the hospital or the surgeons themselves, if I am wrong please let me know, it does seem a bit of a grey area as to who gets what in terms of support, to me it seems that people in the health industry dont seem to be talking to one another and just assume that someone else will pass on your details, that said I also have the fantastic community nursing service available to me out of our local public hospital and the nurses comes every six weeks to give me my xgeva injection and are available for any other nursing service I might need,so sometimes it pays to live in a rural area we do miss out on some things but make up for it in other ways, I have also got the cleaning services of a lovely lady who comes once a fortnight, again this is through the local community nursing service.
wendy552 -
Cannot speak highly enough of my breast care nurse. She called me prior to my first visit with the surgeon and was there at every appointment along the way. She came to my initial oncology appointment for support and to explain anything I didn't understand. This was a lot easier for me than taking family and having to deal with their emotions as well as my own.
If I wasn't happy with what was going on she was the liaison with the doctors to voice my concerns. She called straight after the MDT's to advise me of what the plan was. When it was going to take three months between appointments to get my latest MRI results, I just rang her, she spoke with the surgeon and rang me back with the results in less than 15 mins
Some of you may know that I work in a hospital in a surgical ward. We have two BCN's attached to our ward and some of our nurses will train with them just to get a deeper understanding of the emotional side effects after this type of surgery. They hit the floor most mornings well before the doctors do their rounds checking on their patients.
I have worked here for 8 years and these woman are the absolute bomb for patient advocacy. They will be the voice of the patient when someone might be to scared to question a doctor. They are there at the after surgery reviews to hold hands, answer questions and be a shoulder to cry on if needed.
I have seen them go above and beyond for their patients numerous times, right down to running around the hospital fundraising for a very young patient who didn't have the money to have her eggs frozen prior to chemo.
I do believe they are harder to access in the private sector though. Our BCN's are working with a local support group to try and make them more accessible for private patients.
These women absolutely rock. What an emotionally draining job this would be seeing this every day.
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Yes @sister - such a variety of experiences we seem to have with breast care nurses; from disappointing, to hurtful, to MIA, to staunch advocate, to co-ordinator of services, to provider of timely information, to provider of loving support. I was lucky enough to be at the positive end of the spectrum. Perhaps one of our BCNA colleagues could explain the funding of breast care nurses; and if the differences in funding may lead to the difference in experiences?0
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I had a bcn who visited me in hospital and a week later sat in with me on my first oncology appointment so that I would fully understand everything. She made sure I was getting info and anything else related to my next step. I then bumped into her now and then at the therapy centre I do know that she is only a phone call away. Also being a McGrath foundation bcn she is one of a few. The only way there will be more is through donations to the McGrath foundation to sponsor these nurses. My bcn covers a huge area. As I have been managing reasonably well and not really needing her I like to think that it frees her up to see people who really do need her. Like I said, she is always only a phone call away.0
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Great to hear many women are feeling supported by the nurses. For those of us who have de novo met cancer and no surgery there hasn't been any help from them for me. I have tried contact at Lifehouse in Sydney and was told both on holidays and the one number of someone I got never returned my call. Seems it is a bit hit and miss and variable in access and use.0
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I never intended to diss any of the wonderful medical staff out there - it just seems to be very hit an miss as to whether you get to connect to someone or not. I'm guessing that there are things that I could have accessed a lot easier if I had a bcn that I had a relationship with but I have managed. It seems from posts that others have struggled more and I'm not really sure how the system is supposed to work or if anyone knows.2
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I have posted before about my experience with the McGrath Foundation nurses. I was fobbed off by one of the 6 metastatic breast care nurses because I lived about 1 hour from where she worked. My plastic surgeon is across the road from her workplace. She later sent me a text message apologising for her attitude. Needless to say I did not get back to her.
Yet, on their website they have a big story about a patient with metastatic breast cancer and her fantastic relationship with a McGrath Foundation nurse.
When I was having I.V. chemo I really needed to talk to someone because it really got me down as I had had chemo. 15 years before. The oncology nurses had a lot of difficukty inserting cannulas for my chemo. I was also upset about the idea of having a port inserted.
The hospital social worker was even worse.
This all explains why I rely solely on my G.P. and oncologist.
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Ladies I think it comes down to a few things ....
- the work load that each individual nurse has ....
- What area they are covering in rural areas that can be a huge area.
- my first McGrath Nurse was ok
- our new McGrath Nurse is awesome
- she started our local monthly support group and attends it, I see her like others have stated hitting the floor running basically each day. she goes out of her way to find the resources any of her patients will need.
Always reach out and ask for help with McGrath or your local cancer unit if you need support... call the BCNA helpline or the cancer council in your state.
We need to remember they are human too.... they need to have breaks and take holidays so they can do this day in and day out for us ladies/men who need support etc...
Want more of them buy at PINK BUN in May at Bakers Delight and help raise monies to employ more of them.
Soldiercrab
PS @Sister
you didn't diss any staff you raised a concern.3 -
How many times do you need to ask for assistance?0
