Completely overwhelmed

Loobylou

so, found lump a week ago, had biopsy 3 days later after mammogram and ultrasound. Had to wait to today for results. Thought was going to have lumpectomy and radiation but today told it's a triple negative high grade tumour so seeing oncologist next week to talk about chemo.
feel very under researched! I had spent the intervening days looking at all the lumpectomy reading and therapy, now feel like I have hit by a truck...
my main worry (after the cancer and my kids) is costs, I do not understand how the health system works for cancer. My consultant has sent me to a private oncologist, is this normal? I have bupa (who, when I thought it was lumpectomy said they cover costs) but I don't know what they pay. I am having CT and bone scans on Monday, and I know there is a rebate on that. I am just so confused, just wanted to talk, thanks X

arpie

SO sorry to see you here, @Loobylou  - you are still in the 'shock stage' & will be going thru a whole raft of emotions   I hope you have a bunch of good family & friends to back you up - it really helps.   You don't have to tell EVERYBODY at the start - was diagnose in Jan las year - and still haven't told some friends/family.  Matter of fact, I didn't even send out a lot of Xmas cards, as I didn't feel up to it!!

Others with your diagnosis will jump on soon & give you really good advice .... in the mean time, take deep breaths, keep doing what you enjoy dong to make the time 'go fast' until the next appointment (and there will be many!)  

Have you signed up with a breast care nurse & the support pack from BCNA?

You don't say what area you are from (town/city.)   Other members may be able to advise different resources specifically available to you.

I had private surgery in Jan last year (most of which wasn't covered by my health fund NIB sadly) ..... but I did my Onc Rads public.  Ask the Onc if they do public as well (as my ongoing Onc medication is public also.)   There is no reason to be stuck in the private section if it is not convenient to you & costs a bomb.

All the best with your Scans on Monday ..... it is good that everything is going fairly 'quickly', cos the 'waiting' - really sucks!      EVERY time, it just sucks.  I tried to keep really busy doing stuff I loved doing, to keep my mind occupied (but i don't have kids!)

Take care & big hugs coming your way xxxx

Loobylou

Hey, am near Ringwood in Victoria.
thank you, will look into Breast care nurse now

kmakm

Hi @Loobylou. Welcome to the forum. I'm sorry you've found yourself here. I hope you find it as helpful and supportive as I have. It's a great hive mind, and good for a laugh, a vent and a whinge!

It does all move incredibly fast at the beginning, and for many, treatment plans change when pathology comes back.

Everything you're feeling, experiencing and expressing is entirely normal. Everyone here has been there, we get it. So take some deep breaths and slow everything down.

It's very easy to get fast tracked onto the private health treatment conveyor belt. You get to say stop. Do you like your oncologist? You can ask them if they work in the public system, many of them do.

Do not hesitate to say "how much will that cost me?" at every step of the way. If you get an answer you don't like, ask if there's a cheaper way to do it. You can go to your GP tomorrow and ask to be referred into the public system immediately, where you will pay little to nothing for your treatment. You can mix public and private treatment. Many get treated privately untill radiotherapy, when they go public. Radiotherapy is very expensive in the private system.

The care you receive publicly will be equal to private care. The biggest difference is your choice in personnel. You tend not to get it in the public system. Ie, you may not see the same oncologist each time, depending on how your local hospital/treatment centre is run.

The learning curve when you're diagnosed with breast cancer is a vertical straight line. Fire away with your questions. There's almost always someone here who knows the answers. And if they don't, they know someone who does. There are others here who can speak to your private vs public better than I. Hopefully they'll be along soon!

And you can always call BCNA helpline on 1800 500 258. They're great listeners and fantastic experts on all things BC related.

Hang in there. Big hug, K xox

kmakm

Hey @Loobylou, I'm in the outer-east of Melbourne as well. Private Message me if you want to chat local. You can do that by finding your Inbox in the menu and typing in my @name.

If you see a private breast surgeon, he or she may have breast care nurses they use in their practice. Otherwise, the new Maroondah Hospital Breast and Cancer Centre is filled with breast care nurses and counsellors and all sorts of wonderful support. They can be a bit hit or miss but mine was, and is, an absolute gem. K xox

Loobylou

So, I will see the oncologist weds, I will ask her then about costs and public system. I am also going to call bupa to see what they cover. Probably ask me for a code...
@kmakm thank you, will definately be in touch x

Afraser

Excellent advice from @kmakm. Check what your BUPA cover covers. I was on BUPA for hospital cover (in it for years, never sick, never checked it) and it covered a lot. As indicated, your care is very unlikely to be in any way less in the public system, you just may not get personal continuity of staff. As advised, your GP can help with this. You will end up with a bucket load of knowledge, most of which you never, ever wanted, but you will find your way through this maze so don't panic, deep breath, and keep asking. Lots of people here happy to help. Best wishes. 

kmakm

No worries @Loobylou! Maybe we can grab a cuppa. K xox

SoldierCrab

Hi Loobylou sorry you have need to join us here I am TNBC and am 6 + yrs since diagnosis with No evidence of disease. 

Ask any questions 

Finch

@Loobylou . So sorry you've had to join us, now you're here , you'll find everyone very helpful with lots of good advice , doesn't matter how small a question or how silly it might seem, we've probably asked the same questions as we've all been where you are now and gone through the same uncertainties and worries. 
Diagnosed last February, I elected to have my surgery under a private breast surgeon and then moved to the public system for chemo and radiation. I had excellent treatment and really can't fault it. I hear private patients can end up being considerably out of pocket , so don't hesitate to ask how much each step is going cost. Other than my surgery and my follow up appointments with my surgeon, my treatment hasn't cost me anything. Take care and best wishes xxxx

tigerbeth

@Loobylou sorry you find yourself joining our crew !
Lovely people here with lots of great advice & shoulders to cry on.
I am in FTG so not far away , I went through the Maroondah breast clinic & could not have been happier.
 they work  like a well oiled machine & didn't cost me anything . 
Mind you my diagnosis was early , lumpectomy , radiation & Letrozole with no complications so far . 
You will still be in the WTF stage , it's frightening overwhelming & a steep learning curve . 
You need to arm yourself with courage & a long list of questions at your next appt
sending hugs & if you need to chat feel free
take care xx

Loobylou

Thanks everyone. Spent yesterday getting my head around bots. Hubby asked me if we wanted a second opinion? What do we know about the surgeon, oncologist etc I was wondering is there anywhere we can ask if anyone has used them? I said I didn't want a second opinion as my research showed this is what needs to happen, but I wouldn't mind talking to anyone who has used the same people.

Loobylou

Head around bits!!

kitkatb

Hi @Loobylou so sorry to see that you need to be on this forum but you will find a wonderful bunch of people full of support and get what you are going through.  Also a few laughs along the way on some of the threads when you need a break from the stress you must be going through.  I was also had high grade TNBC  as well as High grade DCIS , It is frightening absolutely but once I started my treatment plan it came as a relief as I could concentrate on what lay ahead.  After saying that I went public the whole way ( 3 surgeries lumpectomy, re excision, then mastectomy )  with TC chemo  between the last 2 surgeries.  I had the same surgeon for each operation as well as the head of oncology as my Oncologist who has been with me each step of the way.  I can honestly say the only things I have paid for is car parking fees ( $5.00 a day ) and a few of my medications.  I waited  3 and a half weeks for the first surgery which is quite normal then when I needed the second it was quite quick.  They covered all of my initial scans then my CT, Bone and MRI  scans. 
I guess what I am saying is the last thing you need is added stress from this shit of a disease and if you can go part public or fully public then go for it.   Sending heaps of positive vibes your way.  Take a deep breath and try and distract yourself with doing things you love as your thoughts must be going a million miles an hour.   xox

kmakm

PM the names to myself, @tigerbeth and @CatRM. We may have come across them, you never know.

Nothing wrong at all with second opinions. My breast surgeon is wonderful. Happy to give you his name if you would like it.

CatRM

Hey @Loobylou, 
Sucks you are here. Sorry mate! I had a single mastectomy with DIEP last Thursday week, through Ringwood's new Breast and Cancer Centre . From diagnosis to operation, it was a little under 4 weeks. Have nothing but praise for the public system thus far (though they did change the op date on me three times which suuuucked). I had my own room, saw all my nurses at least twice, sometimes more, over the 5 nights I stayed there. I had to pay for an MRI but that was because it wasn't essential, the plastic surgeon just wanted to make sure I wouldn't need radiation after she'd done her work on me. The new breast cancer clinic is lovely in Ringwood, the nurses I've met are darlings. x