Newly diagnosed - private or public

NikkiJ6

Hi 

Yesterday I received preliminary pathology results which said I have an invasive poorly differentiated carcinoma. There were a number of further points noted but the gist is that my lump is cancer. 

I don’t have private insurance but I do hav an insurance policy which will pay me a lump sum due to the diagnosis.
my gp asked me if I wanted to go public or private and I opted initially for private but am very aware of how the costs could spiral.
I am in Qld, Gold Coast. I made an appointment at the referred specialist who arranged an MRI for me today. I will see the specialist on Tuesday.
I am just wondering if anyone on the Gold Coast can comment on the public system
and how quickly they move or if anyone without private health insurance has chosen to go private and did you have to sell your house?
I am still very in shock and don’t want to sit and wait but also don’t want to risk my families financial security. I am 45 and still have young children.

Julez1958

I am in Sydney not the Gold Coast and its true my double mastectomy and delayed DIEP flap surgery ended up costing me the same as a small car ( or a couple of very nice overseas trips).I was in a private health fund which covered my private hospital accommodation but not much of the surgeon and anaesthetist fees ( and the Meficare rebates are pitifully low).
The DIEP reconstruction is the “ gold standard “ of reconstruction so if you get implants or go flat ( or only need a lumpectomy) this will be a lot cheaper than what I had.
Also different surgeons charge different amounts so you can shop around, I just went with my GPs recommendation and was 100% happy with my results.
Good luck.

Cath62

Hi @NikkiJ6, sorry you find yourself here. There is alot to work out and you do have time to do it.  I am in Brisbane so can't help with gold coast.

 An option you could consider is a private surgeon to get that part done quickly. You probably would only be in hospital a day or 2 so hospital cost, surgeon, anaesthetist etc. Not sure how much your insurance payout it but hopefully it would cover your surgery. Then if you need Chemo and  or radium go public.

Chemo can be expensive. My chemo sessions including dr, pathology tests etc were nearly $1k each time. These were covered by my private health fund in total but it would be enormous otherwise. 

If you need radium just know that Medicare will kick in if you go private but you will be out of pocket. As a private patient my radium was $23000 of which Medicare covered about $20000. I had 20 rounds. 

Each hospital, dr etc all have different costs so do talk with your dr about options. Good luck 

NikkiJ6

Thanks Ladies,
my lump sun will be just over $50k. So I imagine it should be very helpful but I also am imagining the worst. Since I haven’t yet seen the specialist (I see him on Tuesday) I am in that horrible limbo stage where I’m googling the details from my pathology report!
my report says I have possible retraction artefact and I believe this is suggestive of lymph involvement. 

It’s very overwhelming.

Julez1958

Oh yes I forgot to say that radiation and chemo cost a huge amount but even though I had radiotherapy in the private system I only had $2,000 out of pocket for a total cost of $25,000.
I was lucky not to need chemo but I know lots of people here had it in the public system and were happy with it ( well as happy as you can be having chemo!).

Cath62

Hi @NikkiJ6, if you haven't seen the specialist how do you know the cost?

 Can I just say Dr Google is really not helpful nor accurate. I know the waiting is really hard but try not to diagnose yourself amd work this out. 

It takes a whole team of specialists to work out the treatment for you and those specialists have taken years of study and practice to be able to advise the diagnosis and course of action. Your getting a bit ahead of yourself with this and you are not an expert in pathology and dr google isn't either. Everyone breast cancer is very unique and generalisations via dr google is just a pointless exercise.

Try to keep busy till Tuesday and no more dr google as it is very damaging to anxiety levels which you don't need with this. One step at a time. Tell your dr that you don't have private cover and go from there. They are the experts and will help you navigate all this. BCNA also have a helpline you could call too and they can advise on various matters.

I have lots nursing mates and the gold coast public hospitals are really great so many stay open to having surgery there  too. If surgery is urgent it will be done. If your cancer has been slow growing then there is you have more time. 

Hang in there till Tuesday. Keep busy. It's good weather for cooking a few meals you could freeze for when you do have surgery and I am sure your children are a great distraction as well. Let us know how you go Tuesday if you want to. Best wishes 💐

NikkiJ6

Thanks Cath, I’m really not dr googling. This is from my initial appointment with my GP. I’m an organiser and need to plan, I know I can’t at this stage but was wanting some people experiences either way. If things happen quickly in the public system then I’m happy to go public but I want to understand my options.
we are painting our house at the moment, so am just getting on with that and we are going out for dinner tonight. I feel pretty good really, I’m certainly not panicking. I would just love to hear how real spoke have found the level of care in the public system. Thanks for your kind thoughts

AllyJay

Hi there @NikkiJ6...I'm so sorry you've had to join our not so nice club. I can't speak for the public system in Queensland as I'm in Sydney. I was diagnosed and treated at a large Sydney public hospital where I was actually admitted for another condition. A chest CT scan, which was to check my lungs, turned up the breast cancer. From diagnosis, along with all the scans, biopsies, bone scans and whatnot, the cost to me was nothing. My six months of chemo cost very little...around $80.00 which was for pre chemo meds such as steroids , antihistamines and anti nausea meds. I was in and out of hospital after each AC chemo for a total of 56 days and nights over the four doses. (Other preexisting medical conditions were not helpful). For the years duration of Herceptin treatment, I had to have four cardiac echo scans (every three months) Then came my surgery and after that, all my ongoing appointments with both oncologist and surgeon. Again...it cost me nothing. Some people seem concerned that in the public system, one is often seen by the registrar, rather that the consultant surgeon or oncologist, but I had no problem with this. They are already qualified doctors, but are now at the next level, and they are very well supervised by the head honcho. On one admission, there was a woman in the bed next to me who was a private patient and she made sure everybody knew this. Aside from "her own" specialist who whizzed by each morning, for about three minutes, and followed by his retinue of registrars and other persons, she received nothing that I didn't. She slept in the same type of bed, used the same bathroom, ate the same food, was looked after by the same nurses, and went for x rays and so on, using the same equipment and technicians. My care was the same as hers and my (and my husband's) tax dollars were given a good workout. I'm extremely grateful for our public health system...it has some problems, but for cancer treatment, you get top shelf care. If I was needing a knee replacement or somesuch, I may well sing a different song as the waiting lists are long.

NikkiJ6

Thank you Ally, that helps me immensely. We have only dealt with the public system for far less urgent things and our experience hasn’t been great, so I think what I was really hoping for was to hear that the care given is similar to private. 

I hope your outcomes are positive and thanks for taking the time to reply 😊

iserbrown

@NikkiJ6

This is one time control is in the hands of your medical team.

What type of breast cancer do you have?

There's lots of resources on the BCNA website, a couple of links to help you

https://www.bcna.org.au/resource/fact-sheet-breast-cancer-pathology/

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

As to public or private
Without health insurance.....public

My sister recently spent 16 days in hospital with private health insurance.  The insurer paid $11,000

When I was diagnosed I went private as I was covered.  The surgeon said that with public patients they had to be operated on within 3 weeks.  Don't know if that rule still applies however its Cancer.......

Hope the links above help

Take care

StrongCoffee

Hi! Sorry that you find yourself here, it's a tough place for planners like us as there are so many unknowns along the way. I'm not even in your state, but wanted to share my experiences as we don't have PHI and and have self funded a few private operations.

When booking/paying etc before they give the price they ask if you have PHI and then quote accordingly. One hospital I managed to catch a glimpse of the sheet that had columns for "self funded" and "PHI" pricing - they charge the PHI funds more than they will generally charge you as a self funded private patient. Some specialists charge the same regardless, however some will even bulk bill if they know you don't have PHI. So you really need to speak directly with the specialists and hospitals, rather than relying on information about what other's PHI funds have been billed.

As well as going completely private, I've also seen specialists privately and they've been able to book me/my child into the public hospital system.

So for my breast cancer, I started by seeing a surgeon privately. One of my first questions was, "do you operate in a public hospital", which he did. If I'd wanted a lumpectomy or only the mastectomy, he could have done the surgery at the public hospital 1-2 weeks after getting my MRI results. However I opted for an immediate implant reconstruction, so I saw a plastic surgeon he recommended who works at the same hospital, privately to speed up the process.

There's pretty firm guidelines on how long they can let you wait in the public system for cancer removal and I ended up waiting the max (30 days from booking) as I was having an immediate reconstruction. This meant they had to coordinate the availability of 3 surgeons (breast, lymph nodes and plastics).

So I did all my pre-surgery stuff privately, then surgery and the immediate follow up was in the public system. It was hoped my surgery choice meant no radio therapy, which thankfully was correct. Once it was known (thanks to a $3000 test) I wouldn't need chemo, I switched back to seeing all the specialists privately. It saves me money as I have to take a whole day off for hospital appointments, but can just leave work 1hr early to get to a late appointment privately.

When weighing up how you may use the lump sum payout, also consider ongoing quality of life/ability to work. I ran out of sick leave as I needed an extra week to recover from surgery. If I had needed radiotherapy or chemo, all that would have had to be done in time using unpaid leave. Due to my work and location, I would have needed to take the 6-7 weeks off for radiotherapy (hence choosing a mastectomy to try to avoid this, as I had no lymph nodes involved). If I'd had chemo, assuming I'd need a week off each round, this would have cost me at least $8k in lost wages. I may have been recommended to take the full 12 weeks off, or more, as I work in a primary school (germs!!!). This year (BC was in 2021) I've dropped to part time as I want to reduce my stress/enjoy time with the kids - definitely feeling more urgency around this since a BC diagnosis! Having a lump of money available would have made this decision much easier.

There is certainly lots to consider, but also a lot of options or combinations of options available too.

NikkiJ6

Thanks so much for taking the time to reply. I am fortunate to also have income protection insurance should I need it but I work for our own business too, so it can be as flexible as needed.
I feel a lot more positive about using the public system and it sounds like there are many more options than just one or the other. I’m going to try not to worry about it now until I see the specialist on Tuesday 😊.

iserbrown

https://onlinenetwork.bcna.org.au/discussion/21454/gold-coast-support-page-and-group


This may help - you will find them on the internet 

NikkiJ6

iserbrown said:

https://onlinenetwork.bcna.org.au/discussion/21454/gold-coast-support-page-and-group


This may help - you will find them on the internet 

Wonderful thank you 😊 

arpie

Hi @NikkiJ6 - Welcome to the forum - but sorry to see you join our exclusive club - it is a massive shock to the system to get the diagnosis (as we all know.)

You might like to join the Young Women's Group .... you can discuss everything there in total privacy.

Re Private vs public - I went private for the surgery just to 'get it done asap' as my story started in the Oct/Nov & the diagnosis wasn't til early Jan the following year - and as you know, the waiting really SUCKS!  Many surgeons work in both systems .... so ask the different wait times if you go private vs public with them.

I went public for my radiation & paid nothing.  I cannot fault it here in NSW (rural) and I've seen my Specialist Rad Onc every time (I've never seen 'randoms') which has been very comforting.   My ongoing Medical Oncologist is also on the Public System (and was recommended to me by my Rad Onc) and she is VERY caring & I pay nothing.   She is also my husband's Onc (who is on palliative chemo) and as we went private with him, (less travel) so we pay $110 per consult (of which a portion is reimbursed by medicare) and whilst the chemo is free, the meds/tablets aren't (god only knows why!) but that is a minuscule cost compared to the convenience of not having to travel 1/2hr+ to the appts, if we'd chosen to go public.

Most I've spoken to who've gone Public have also been seen & treated in a timely fashion too ..... tho a few weeks may seem a lifetime, as you wait!  

Going Private 'can be' very expensive.  I was out of pocket about $7000+ .... even having to pay a $500 pathology bill that for some reason wasn't even covered by Medicare .....  So when comparing the two - ask the surgeon if he is 'no gap' (and also the anaesthetist! ) They should actually give you a written quote. 

My girlfriend on the Sunshine Coast is very happy with her treatment under the public system in Qld - including a hip replacement and follow up physio & ongoing hydropool exercise etc, following mets to her hip.  

Try & take a buddy with you to all your appointments as an extra set of ears and support, as it is easy to miss things at the time.  I also recorded all my early appointments too on my phone, so I could go over them again later, for the same reason.  Write down any questions that you, so you can tick them off as you ask them.  Better still, print off 2 copies & give the surgeon one, so HE can go thru them all too!  I do this on EVERY appt with hubby's consults.

It sounds like you are pretty busy just now with the house painting etc - try & keep busy doing stuff you enjoy, to take your mind off the appts .... once you have a surgery date, you'll be relieved & once you've had your surgery, you will just feel SO much better knowing it is 'out' .... I know I was!

Feel free to jump onto this thread to see some 'other areas' that we have in the forum that may be of interest to you - we love seeing everyone's pets, gardens, art & craft - and we even have some funny bits for a giggle when we need them!  Start from Page 1 on the Friday Funnies - there are some BEAUTIES! 
There's also a link to what to take to hospital with you & a link to tick lists re questions to ask of your Medical Team.  
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Take care & all the best for your Appt on Tues xx

Beaglemum

@NikkiJ6

Like many others I went private for my surgery, just to get it done asap, but I had PHI so that helped.

 I did however go public for both my Chemo and Rads and the only out of pockets were some medications around the chemo, steroids and post chemo injection (can't remember the name) .  So very little cost to me.

I think the treatment in the public was great, couldn't fault it on either chemo or radiation.  I was very lucky in that the treatment centre was next door to where I worked, so they booked me in for late in afternoon for my radiation and I went to work as normal each day and just left early to complete my treatment. 

It isn't a case of all one way or the other.  

Best of luck with your appt next week.