Breast Care Nurses
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I think @SoldierCrab has hit the nail on the head. It's a bit like doctors I suppose. Some are hugely sympathetic, some are straight down the line, some you have to constantly ask questions to get answers. Some are planning their next golf game.
I let my BCN off the hook so to speak after I changed oncologists and went to a different hospital so she could spend more time with newly diagnosed patients. I was ok and didn't feel the need to contact her really by that stage. I could have rang anytime though.
Public vs private. I think it depends on the hospitals as well. Some people have great service in the public system and some people have shitty service and follow up in the private system.
I had no issues at all, I went public for the surgery and got admitted as a public patient in a private hospital for chemo and radiation. Both hospitals and every nurse or Dr I dealt with was awesome.
I was diagnosed on a Friday, I had just gotten back from my GP with the dreaded news and the hospital rang. Surgical apt the following Friday If I had of chosen the mastectomy instead of lumpectomy I would have been able to have my surgery on the Monday with the same surgeon I could have paid a lot of money to if I had gone to his rooms around the corner from the hospital. It was my choice to chase around the primary lesion as it couldn't be felt, so it was one month to the day.
Generally elective surgery will get shuffled to make way for more urgent cases.
The whole thing is a team effort and maybe that is sometimes why the public system is more of a well oiled machine. Everyone knows how the other members work, everyone follows up because they don't want their butts kicked by the powers that be.
Don't know. Just a though
Back to the original subject. More funding, more nurses.
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Hi all, I've been following this thread with interest. I think a lot depends on the individual hospital, be it public or private. I've had experiences at both ends of the spectrum.
I live in a large regional centre, whose health system serves a population probably in excess of 600 000 people. There are 3 publicly funded bcn's plus a specialist metastatic bcn.
I had neoadjuvant chemo, and self referred to to the bcn's, as I knew I could. In our first phone conversation, after leaving 2 or 3 messages, I was told I could ring and make an appointment with one of them. When I went to do this, it wasn't that easy, but did eventually get an appointment. The nurse I met was very pleasant, professional, helpful. I was told if I needed to see them again, to come in to their drop in clinic, held one afternoon per week on a day I worked, which meant i would need to take time off work to go. I was also told I could call or email, and someone would get back to me. I'm still waiting for a callback on at least 2 messages I left..... over 2&1/2 years ago. Emails didn't get a response until I started mentioning the possibility of making a complaint.
I was a public patient for chemo and radiotherapy.
I opted to have my surgery as a private patient in a state capital. I met a bcn pre-op on the day of surgery. Because I was from out of town, my surgeon kept me in for longer than standard, in case I neede further surgery, which I did. Other than the weekend, I saw one of the 3 bcn's at that hospital every day of my stay, both individually, and with my surgeon. I rang them a few times with concerns down the track. I had a weekly call from them for the first few weeks, then monthly, gradually dropping off to 6-8 weeks between calls until well over 12 months after my surgery. They were fantastic. I only wished I'd lived closer to be able to visit them at times with my concerns.
I know that I can still attend the local drop in clinic if I need to. And they were the ones who told me not to wait for my scheduled appointment when my lympoedema was developing, before anything obvious happened, so I thank them for that.
I guess what I'm trying to say is that you can also have a good experience with bcn's in the private sector, and a poor experience in the public sector, or vice versa. A lot can dependon work load and pressures, although as patients we shouldn't need to know about that stuff.1 -
I had a breast care nurse sit in with me when I saw the breast surgeon. When the results of the bone scan showed that I was stage 4, straight to the medical oncologist and never saw the breast care nurse again, that was 2016. Nor did she ring me to check or sit in with my initial consultation with the medical onc.
Although, today my visit the oncologist, I noticed a McGrath nurse around, sitting in with patients & today my oncologist asked if I had one.
Maybe I’ll get one next time0 -
Since my radiation ended nearly 2 weeks ago. I have had skin peeling and very sore. The therapy centre dressed the area and gave me supplies for home. They said a community nurse would contact me which they did the next day and visited the next and did a dressing and left me with more supplies. The nurse asked if I had been in touch with Palliative Care. Well I hadn't even heard of them. She said it's not only for end of life care but offer lots of help. Maybe if anyone has this service close to them they could contact them. Although my hubby does my dressings the nurse said I could go to one of their clinics to get the dressings done as I felt the nurses time was needed for those who couldn't get out and about.0
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My original post for this thread was the result of reading other people's posts over the months and my early morning musings. Although I recognised that there were widely varying experiences, I never expected such a big response. It's clear that for some people, the bc nurses have been invaluable in helping them cope and navigate through their issues and for others, they're of little or no value at all (my experience), and seem to be just a marketing gimmick. There have been a couple of suggestions that the role of the bc nurse needs to be explicity explained and perhaps this should also include the expected longevity of the relationship between nurse and patient. I look forward to the possibility of meeting a new bc nurse in August when I have rads in a public hospital and maybe having a different experience.1
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I emailed the breastcare nurse I dealt with during my surgery to find out information about reconstruction evenings so will see if I get a response.0
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@soldiercrab in my view also, hit the nail on the head! No doubt with some of the Breast nurses they have a huge workload and I guess that we are categorised hence there's perhaps always someone else as a priority!
At least we have the option of this forum, BCNA helpline and other organisations and our GP to ask for support services within our area
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@Sister & all others! Shortly after I was diagnosed, I received a lot of info to read. One of the brochures was about the McGrath Foundation so I went onto the website, typed in my postcode & found the nearest nurse to me which was still an hour away as I live in the country. I emailed her my story & shortly after she rang me & we have been in constant contact ever since by phone, email & she has also dropped in to see me one day when she came to my town for a monthly cancer support group she runs. As no-one in my town knows about my condition, i told her I wasn't comfortable going to the meeting so she came to visit me at my home! She was a trained medical nurse also so she knows EVERYTHING I need to know. She has been with me every step & her advice & support has been invaluable. She seems to know just what i am thinking & knows when to ring me & she rang only a few days ago. I can ask her any question & if she doesn't know the answer, she will find out. She also sends me lots of info in the mail & has forwarded me a wonderful book to read about DCIS. Sometimes doctors/surgeons don't explain things well enough so I am always asking her clarification on what things mean & what i should do. Even though i am back at work & am not undergoing any further treatments/operations, she said she will stay with me for as long as I need her & definitely through the first year. I also had a nurse at the hospital & one that was attached to my surgeon & I did have to ring them on a couple of occasions to ask specific questions. I'm sorry that many of you who seem to have needed the services of a nurse more than me, haven't had the wonderful experience I have. I did have to initiate the relationship at the beginning to introduce myself & I did wonder at the time if somehow they got told of our names & contacted us first but know that is not the case now. I encourage any of you to look up the website & find a nurse near you & even if they live an hour or so away, you can chat on the phone or email them anytime. I feel very lucky to have her but this forum & the BCNA website has also been invaluable but it is lovely to be able to speak to a professional who understands. xx3
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When I was first diagnosed I had a lovely BCN but she went on long service leave. The one I have now is not so nice, I've had a lot of questions and the last time we spoke she was quite abrupt with me, which actually left me in tears. I found just basic information which you think they would tell everyone - was not forthcoming from this particular BCN so I always had to ask. My constant questions seemed to really annoy her.0
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I got a pleasant response to my email pretty promptly this morning which I was nice - she also asked how I am going with my chemo.4
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I had a horrible one. She just banged on for hours about nothing for 3 hours before my first chemo, to the extent I was exhausted. Then walked me to chemo and ran away lol
I had 6 mths chemo, masectomy ( she was suppsed to be at pre-med but no show) and now radiation via six hospital visits and reviews where she was advised everytime and again no show.
She popped in on my last visit to my radiologist and called me wendy...0 -
Feedback whether good or bad needs to put forward so that they understand the fragility of patients when they are flippant about conversation1
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