Lack of info/communication from healthcare providers
EP1977TCB
Member Posts: 3 ✭
Hello, I am feeling very frustrated by the lack of information. Referred to Royal Perth Hospital Breast Clinic for invasive breast cancer stage 2 after biopsy in November. Received a letter 2 weeks ago advising of appointment at the breast clinic in February, then a message left saying the appointment is now next week. Called for information as to process and procedures and possible time lines, there is nothing, told nothing. I understand every treatment is individual and every hospital is totally overloaded, but I have no idea whether I will have surgery this month or next, what other tests I might have, whether I should be planning for time off work - when and for how long. It all seems so blase, I feel like just not bothering about it to be honest. I will, of course, but I'm not going to put my life on hold. I'm a community nurse and I always try to support my clients to the best of my ability and knowledge. I'm feeling regretful that I let my private health insurance go, I would have answers and been treated by now.
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Comments
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So sorry to see you here @EP1977TCB - joining the club that no-one really wanted to join ...
Also sorry for the mucking around with your appointments - at least it has been brought forward instead of a further delay xx.
Do you live in Perth or nearby, not too far from the hospital? You can add your general location to your Profile.
When I saw my surgeon, he also wanted a Sentinel Node test done, which was the next day (to identify which nodes the tumour was draining to) and then my surgery was the day after that.
As I live in a regional area, I stayed in overnight - otherwise, I understand I may have been sent home the same day .... but there is usually a period of 'down time' from work & lifting stuff & even driving - so I would suggest you be preparing for at least a week off work, to get thru that, depending on what surgery you end up having.
Sometimes, the emotional toll is even greater than the physical toll - so I hope you have supportive friends & family around you at this time. Take someone with you to your meetings as a separate set of ears - and also consider recording the meetings, so you can go back over it later, if need be. It is easy to become distracted at the time & 'miss' bits that have been said.
take care, all the best for your appt next week - let us know how you go. xx
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Thanks so much that is very helpful1
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Unfortunately the way you describe your situation is not unusual with any health. Form letters are sent out and appointments changed. I am talking from personal experience with my Dad as an outpatient and sometimes left sitting for hours because he didn't go to the counter to ask if he maybe seen to shortly! Until such time as you have actually been seen and become a person rather than an appointment........sorry it has happened to you. Personally I do have private health insurance and did not suffer any delays.1
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That does sound slow. But I am not familiar with the normal speed of treatment in the Public sector.
Have you had a Whole body bone scan, and CT of abdomen and chest?
I thought that these tests were necessary to give the stage.
Have you phoned to see if there is a Breast Care Nurse with that clinic.
If you are lucky and there is one, she may be able to answer your questions on what to expect and time frames. I was super 'lucky'. My Mastectomy was 10 days after I found the lump, but Private.
If you know it is stage 2, do you know the Grade?
I was Grade 3, which is fast growing. I had a Mammogram 9 mths prior. Also when my core biopsy was done, they did a biopsy in my axilla. Which came back as a positive lymph node?
Grade 1 is the slowest growing.
I would make a nuisance of myself if I was you, making calls.
I wish you well, and hope that you get answers soon, hopefully next week.
Also a suggestion, if when you get answers, if your treatment is extensive.
You may want to start claim for Income protection. You may have this included in your superannuation.
I took 10 months off work as a nurse. I did not want to be unreliable at work or exposed to patients with infections.2 -
Unfortunately if you want timely treatment you will need to go private and be out of pocket. I gave up my private cover many years ago, so I had a wait of 2 months from diagnosis to surgery. My understanding is that the public system is now even more overstretched. For example I actually had my yearly mammogram and ultrasound done today, and I have to wait for an appointment to get the results, which I am told could be a four week wait, and even then it will be a telehealth appointment.
Being more proactive and pushy now than I was when I first got diagnosed I asked them to send my results to my GP, and I also asked for the Image results on a CD so I can take it off to a private place next year, I just don't need all the stress that can go with the waiting times in the public health system.
I wish you all the best and do try to just take a day at a time, and I know the wait can be very stressful and knowing what to do ie whether to go on leave from work now...... or when! I cannot fault the excellent care I got from a specialist surgeon who does both private and public, so in the end I have been happy I went public. Less out of pocket, and I put my patience to good practise in that time.
@Abbydog mentions you can take Income Protection if this is a default in your superannuation or you have added it to your basic super plan. It can take up to 12 weeks for them to start paying you, and also I believe most (if not all) will not allow you to work a day here or there ie you are either medically unfit to work or you are not is how they operate. I went that route as I had 18 months of active treatment, and I had Income Protections paid for 2 years, and had so many appointments that we not done one day after another, but were spread out over 2 months, that is what is so annoying with the public system in my opinion.
Take care and do what is best for you. xx1 -
Thank youXX0
