"Breast cancer treatment"

About: East Metropolitan Health Service

(as a friend),

My friend had a mastectomy last year at Royal Perth Hospital (RPH). On her initial consultation she was told they would take the lymph nodes at the same time as the mastectomy. She had to be at the hospital and fasting from 6:30am and then she didn’t have her surgery until late that afternoon. No food, scary operation and made to wait so long. Couldn’t she have got there at lunch time?

On waking from the operation, they told her that they only biopsied her lymph nodes. Whilst recovering from her mastectomy - a week or so later after they got the biopsy results back - she was called and told they found the lymph nodes were also cancerous and therefore she needed another surgery to remove them. The surgeon could only fit her in as quickly as possible at Armadale Hospital.

We feel the surgeon has been dismissive of her questions about reconstruction - which has been of much distress to her as you can imagine. She had another round of tests and from what we can understand her previously healthy kidneys are now ruined. I believe the professional who did the test on her kidneys accused her of doing the damage herself. But it is our understanding that the date from when the kidneys went from healthy to unhealthy was the day of the lymph node surgery at Armadale and we believe the kidney damage is related to this surgery.  They sent her home from Armadale with violent vomiting and we felt they dismissed it as being a side effect of the anaesthetic.

When my friend started chemotherapy at RPH, she was made to wait much longer than expected even though she was there on time. At some point there was beeping, so the nurse came and had a look, wouldn't tell her what the issue was, came back a few times and with someone else who then told her they may have given her the wrong dose - but you should be ok.

My friend now has no confidence in their treatment of her and is anxious about having to go in for her next round of chemotherapy. She is beside herself, upset and has felt like she has been dismissed and disrespected at every point.

Responses

Response from Liz MacLeod, Chief Executive, East Metropolitan Health Service

picture of Liz MacLeod

Dear Concerned friend,

Thank you for coming forward here on behalf of your friend, to share their experience as a patient at both Royal Perth and Armadale Hospitals recently. Receiving feedback like yours from across these hospitals within the East Metropolitan Health Service will help assist us in improving the timely care to future patients at our hospital sites.

I would firstly like to apologise for what must be a very distressing time for your friend which we have obviously compounded having fallen short of her expectations in our provision of care. It would appear from what you describe, poor communication on our behalf at the time of your friend’s consent for the mastectomy did not give a clear picture of what they could expect. With many patients requiring more than one operation during breast cancer treatment, it is vital to have a detailed understanding of what options are available and in what order. We have identified that this is an area for improvement across all our hospitals and community service providers and we have initiated a program for doctors and nurses using real-life experiences from some of our consumers.

With regard to the issue of longer than expected wait times for surgery. I understand that this understandably heightens the worry and anxiousness of patients. While we aim to minimise delays through better theatre scheduling, at times, due to the nature of the hospital environment, some delays may occur as urgent cases present.

Our Medical Day Unit at Royal Perth Hospital has recently made radical changes to accurately book patient appointments and better understand the time required to deliver chemotherapy treatments, all with the aim to reduce waiting here. Disheartening as this whole experience must have been for your friend, please could I just urge her to continue seeking treatment here, and don’t hesitate to contact the Medical Day Unit staff. The Nursing Manager and Specialist Pharmacist are there to provide advice about the experience of chemotherapy treatment, and to talk through her concerns.

To read that your friend was sent home from Armadale Hospital with violent vomiting following her lymph node operation is unacceptable. This is not our standard practice for patients recovering from surgery. It would be more usual to ensure that patients are able to consume food and fluids without the side-effects of nausea and vomiting. I apologise unreservedly that your friend was discharged feeling this way and dismissed with the excuse of it being a side-effect of the anaesthetic.

Another deep concern that you raise in relation to your friends’ lymph node surgery and its impact on her kidneys; generally lymph node surgery is unlikely to affect kidney function unless there is an underlying medical condition. However to fully understand this for your friend, more investigation is required, and we would be most grateful if you or your friend would consider providing us with more details by contacting Royal Perth Hospital Consumer Engagement Unit on (08) 9224 1637. This will enable our services to look into your friends’ specific treatment and provide some answers to this.

Treating our patients with respect, kindness and compassion, whichever hospital they present to across the East Metropolitan Health Service must be fundamental to everything we do. So please know that your feedback will be used to work towards actively providing more compassionate support and care.

Once again thank you for sharing all your concerns with us, we are deeply apologetic about your friends’ experience and we hope to hear from her soon.

Kindest regards

Liz MacLeod

Chief Executive

East Metropolitan Health Service

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Update posted by Concerned friend (a friend)

So basically and in my opinion - I'm sorry my staff have been extremely unprofessional. Okay. So now what?Apologies are a start I guess, but what happens now? How is any of it going to be fixed?

I have not even included all of the other things that have happened to her as I thought it would be too much of a novel, but here's a couple more things that have happened that have left her distressed and not confident with any of her treatment.

As her breast size is larger than average, she was not given a free bra, they just said sorry but you will have to buy one yourself. It was almost $200-money she does not have and I believe money almost every other breast cancer sufferer doesn't have to pay for themselves.

After her mastectomy she was sent home with nothing. No bra, no prosthetic, I think she was in shock and very depressed after that operation. She was absolutely devastated and felt like a freak and felt she was given a shrug and an - oh well - as it seemed like she was kicked out of the door. She did not sleep for almost two days and spent the whole time crying and desperately trying to make herself something she could use as a prosthesis. She had called and got herself an appointment with the breast prosthetic people, but she had to wait for the Monday (as they didn't do weekends).

After they measured her and did what they do, she then had to wait 5 weeks for her prosthetic to arrive. And it left her upset beyond belief the whole 5 weeks she was waiting. She was just always desperately trying to fashion something that she could use as a temporary breast. It was heartbreaking to watch. She barely left the house that whole time.

She contacted the social worker (at my urging) at RPH to ask if they could help her with her finances as she is now in arrears with her rent and bills and she is not entitled to Centrelink benefits. The social worker told her-maybe you should move into a room at one of your friends houses to save money. That was it. The extent of the social workers help in my opinion, was a ludicrous suggestion for her to move herself, her child, pets, full house of furniture and garden shed full of tools, lawn mower, etc. etc. into one of her friends rooms! I know most of her friends and none of them, nor myself, are wealthy people living in mansions that could accommodate her family, furniture and pets.

She was inconsolable and now has lost all faith in the social worker's help and has vowed not to deal with them at all anymore. I believe that is such a ridiculous suggestion-do you not agree? I am absolutely gob smacked at that. I don't understand how the social worker considered that a viable option. It's just mind blowing to think someone in their position would suggest such a completely unrealistic option for her and seemingly give her no other advice or practical help. So yeah. Now what?

Her friends have all rallied around her-but as I previously mentioned, none of us have the capacity to take her in. I have had to give her cash just so she can pay for parking at her appointments at RPH. That also seems unfair to make patients going through cancer have to pay for parking. Is there anything that can be done about that?

Avoiding stress is advice she has been given by many people at hospital and at home, but this whole experience has been one stressful thing after another. So all I can say is, okay you've apologised, now what? Will her next treatment be more professional and put her at ease? Has the social worker tried in any way to get her any help financially or done anything real to put her mind at ease? Will the social worker be told that their advice in our opinion, was idiotic and upsetting and shouldn't be said to anyone ever? Will they apologise?

She has another chemo appointment coming up and I'm dreading it as much as she is, as I don't want her to come away again feeling mistreated and distressed. I will definitely keep you posted though as I am not confident it will be any better.

Response from Liz MacLeod, Chief Executive, East Metropolitan Health Service

picture of Liz MacLeod

Dear Concerned friend,

Once again thank you for taking the time to reach out on behalf of your friend and inform me of her experience.

We would like to assist your friend and make her journey through our health service a vastly different one to what she has been experiencing.

If you or your friend could contact the Office of the Executive Director at Royal Perth Hospital on 9224 2219 they will be able to assist and ensure that your friend’s concerns are kept confidential while making sure she is treated with dignity and compassion.

Once again, I sincerely apologise and encourage you to please connect with Royal Perth Hospital as soon as possible so that we can proactively improve the care that is being provided to your friend.

Kindest regards

Liz MacLeod

Chief Executive

East Metropolitan Health Service

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