Forum Discussion
Terrible service
i wrote this huge long post and lost it, so here is the short version. I am very unhappy with the way I'm being treated at surgeons clinic and now swapping to public system.
last Tuesday I was to ring my surgeon to get my test results as they were not available when I went to see him the week before. Yes thats right, I said ring. Somehow he didnt think it warranted a face to face. Both my GP and the nurse counsellor at Cancer Council thought this was very unprofessional and a poor duty of care. Well imagine when I rang he was not available, off ill, and after several phone calls I finally was told the results by the breast care nurse. She told me clear margins and lymph nodes clear, no need for further surgery.
I saw my GP yesterday morning, as right now he is the only medico I trust and feel comfortable with to get support. I had to ask 4 times to try and get my results forwarded to him last week. Finally I rang my GP office and they rang the surgeon to ask for them. After being told they were not there (didn't they just tell me the results) my receptionist rang the hospital to get them.
At some point the surgeon actually rang my GP. When I saw the GP yesterday he felt very uncomfortable giving me the results without being a specialiat to be able to explain them. One of my lymph nodes did in fact have cancer cells present, not clear as I had been told on the phone. Apparently the numbers are miniscule but they are there. What does this mean? Why was I not told the truth last week? I am angry and scared stiff.
I had already made the decision to not return to the clinic the surgeon operates from, this confirmed my decision. The GP faxed off an urgent referral for me to be seen in the public system.
I am in a daze
11 Replies
I have gone through the public health system and all but one appointment was great...one they were 4 hours behind so a bit rushed. Also being a multidisciplinary team meant there were lots of people to discuss things with and the breast care nurses have been a Godsend navigating between specialist and going over things again with me when I have needed. Since I'm in the country I just email queries and they either ring back or email. Hope things improve for you soon. Kath x
Oh so sorry you had to have a terrible experience like that it is bad enough being diagnosed and going through treatment. Let me tell you I had a couple of aweful experiences after my surgery too, I am a good patient and I try and make it easy for everyone so it leaves you feeling a bit hopeless when that sort of thing happens.
I learnt early in the peace not to put up with that sort of treatment. I was told by a dear friend when I was first diagnosed whose wife had just gone down that road, never settle for a team that you don't have confidence in, ask questions if your not sure thats what they are there for.
I am sure your GP will sort things out for you, try not to worry too much my friend....one step at a time. We are always here for you, we understand. Sending hugs to you.
Cheers Jen ?? ?? ?? xx
Good for you. I know some people believe that being a private patient is best. What if you can't afford private medical insurance! I can't! I have been fortunate that my experience with the public system has been wonderful. I am due to have surgery in the next fortnight. My Gp referred me to a wonderful surgeon (who even arranged a referral to a 2Nd surgeon for another opinion). I live in regional Victoria and have had the best support team I could ever hope for. Everyone in my team is kept abreast (excuse the pun). I have seen my surgeon (stayed with the first one) at least 5 times and 2 of those appointment were each 1hr long. He has spoken to my GP, Psychiatrist, my Psychologist, I have seen the anaesthetist twice who sent me for ECG and ultrasound on ny heart. Pharmacology dna tests were arranged by my psychiatrist to check medication levels in my blood stream. I have had on going counselling with a psychologist (you can arrange for your gp to refer you to one under a mental health plan.) This gives you 10 visits per year under Medicare, although some may charge a small gap. Make sure you find the best fit for you. It took me 3 goes to get my best fit. My breast care nurse rings me to see how I am. I have met my oncologist and had my full bone and body scans done. Everyone is getting cc emails so the whole team knows exactly what's going on. All of this has been done through the public system in a regional area. I hope you find someone you feel more confident with and can trust more. Good luck
I have been at the Peter Mac from the beginning and have been impressed by their kindness & professionalism. I have a team that is with me for whole journey and someone is always there to answer my questions and give me advice even at 3am. Yes sometimes I have to wait for my appt or my chemo chair but I don't mind as I know it just means they are taking great care of someone else.
Good luck, I am sure they will take great care of you.
So glad you made yhe decision that will give you more confidence while you under go chemo.
It is a very frightening time and the fear of the unknown is just mind boggling
I must say that is very unprofessional to deal with a cancer patient.
I initially had 2 nodes removed while I had my bilateral mastectomy. 1 came back cancer. I then had a node disection and 26 were removed with another one cancerous. I fealt that was good odds
Sending you strength and off course hugs.
I am half way through my chemo and know just how you are feeling.
You will get there one step at a time.
Airlie ?? ??
Need an edit button on replies. Think as the lymph nodes as your blood sifters. They catch anything not supposed to be in your blood stream including most cancer cells. I won't say all as sometimes the cells will go for a weakened point but usually its lymph nodes collection.
Chances are if it spread it will go for one of the other 18 to 30 nodes in the armpit, not all over your body. They might just blast it with chemo or have another op to remove all the underarm nodes just to be safe which is what they did with me. None on the second op were positive on biopsy but it was good to know I am safe.
Thanks for the support ladies. I have a wonderful GP thank goodness. I have been taking a support person to all my appts so far and yes it does help. I am looking forward to starting with Peter Mac I have confidence they will be great, supportive and organised.
Brenda he only took 2 nodes, and 1 is clear. Got my fingers crossed for an appt soon. I really need someone to explain this for me. I have visions of cancer cells roaming free ready to attack again. Scary, scary scary. I know I am probably over dramaticing this but hey I've never had to deal with this before.
Thanks for reading
Hahaha! I just did the same thing! Hit the comment button again instead of scrolling down to the post button and lost the whole thing.
If its only one node positive and at least 4 clear, it might be ok. It would be nice if a surgeon could explain that though. There is no reason why even your GP couldn't give you a copy of the test results though. I got mine from my GP as my surgeon didn't have a printer in his office and it would be a bit of a rigmarole to go to the front desk for it.
Public system is good as its a team of surgeons not just one so if ones off sick the others are fully informed and know what was discussed for treatment in their online meetings.
Sounds like you have a good breast nurse and GP Dr so that's the start of a good team. You just need the other ones set up for you now. Here's hoping you now have trouble free treatment with no more hiccups. XXXX
Really glad you have a GP that you trust. The public system will take care of you. Great advice about writing down questions and taking a support person with you if you can.
This really highlights the importance of communication and how things can go very badly if stuffed up. Very sorry that it's happened to you but, as scorpionqueen said, it will all work out.
Perhaps if you haven't heard from the new service in the next 14 days contact your GP to chase it up.
:)
