Forum Discussion
sandramj
9 years agoMember
Emotions and costs of BC
Since the initial shock of diagnosis I have had so many emotions and many new ones and unfortunately many old ones. Something that has bothered me from Day one is the feeling that we, newly diagnosed breast cancer patients, are being preyed upon somewhat. For me, at the news that I had invasive Breast cancer I presumed Id need to get "treatment" whatever that was ASAP and had never encountered any doctors or places anything to do with oncology - because I had "prayed" (although not religious) that I would NEVER need an oncologist.
So the news that you need to choose a breast cancer doctor and see one asap is a big shock and still reeling from the diagnosis I floundered asking the Breastscreen who they would recommend. Of course they can't recommend. And as far as I know there isn't a rating system like the Myschool website that lists and scores doctors in any one field.
So where to start - I got a list of three surgeons from the Breastscreen people and they advised the chap Id seen who'd given me the diagnosis was on the list so I thought Id choose him since he already knew me and my diagnosis. quick call to my daughter (GP Practice Mngr) who confirmed he was the No. 1 - so I rang and made an appointment.
The rooms were very upmarket and at a ONE STOP building I learned later that held the womens imaging centre, pathology laboratories, radiation facilities, chemotherapy treatment facilities and oncologists in the one building. The receptionists were very lovely and particularly personable and I was impressed by their personal attention.
After consultation with the Dr and date scheduled for surgery I was given a few documents to take home and read and sign and take them to the hospital before date of surgery. The out of pocket costs were huge. $3000-4000 right there. And I thought "well no time to get a second opinion or to get quotes so we'll get this done and question the accounts as we go along".
To my surprise MRI's that I had had for fifteen years that were free were no longer covered for women (over 50) diagnosed with BS. Bone density was not covered for 50+ with BC. Ultra sounds and biopsies were not covered and even as a pensioner and with top medical insurance the total bill within the two weeks of surgery and tests after came to $7000 out of pocket.
With the emotions of being newly diagnosed and coming to terms with the cancer, the new terminologies, new doctors, panic, rush I felt like id been used to sell services to me at any cost because I had no time to get second opinions. I did ask the receptionists at the breast surgeons rooms if the quote they had given me was correct given I was an and pensioner and usually had been bulk billed for all illness before this. Her reply was _ all people are charged the same across the board". A sort of take it or leave it attitude - which of course we can't really leave it as Id lost the list of other breast surgeons by this stage. The surgeon required full payment of the gap prior to admission to hospital for the surgery. The hospital also required any gap payment prior to admission.
The anaesthetist also charged well above the scheduled fee and required a gap payment prior to admission to surgery. South Coast Radiology required payment at the time of each and every test I had with them and when I received the refunds from Medicare was bitterly disappointed to find that I had paid in excess of $1000 just in gap payments to SCR.
The feelings of being ripped off at a time when I was extremely vulnerable made my anxiety and emotions stronger. But I felt compelled to be unable to complain and that I should be grateful. So the emotions were confusing - I was angry that the government had stopped subsidising MRI for women with breast cancer - WHY. Also the ultra sounds subsidies had been reduced severely for again seniors - why? I was angry that drug addicts seem to be able to access free needles and a clean place to shoot up and receive substitute drugs for a condition that is illegal to take drugs in the first place. The emotions and thoughts were racing around in my brain- Does this government want women with breast cancer over 50 to just die if they can't afford treatment? Why are we charged so much? When I had my hip replacement I was able to shop around for the best surgeon who happened to bulk bill everything. He was fabulous. Here I am now in a life threatening state of health with cancer and Im not afforded the time or any help with ways of reducing the costs of treatment and in fact feels like Im being punished for getting cancer and being a senior.
So the news that you need to choose a breast cancer doctor and see one asap is a big shock and still reeling from the diagnosis I floundered asking the Breastscreen who they would recommend. Of course they can't recommend. And as far as I know there isn't a rating system like the Myschool website that lists and scores doctors in any one field.
So where to start - I got a list of three surgeons from the Breastscreen people and they advised the chap Id seen who'd given me the diagnosis was on the list so I thought Id choose him since he already knew me and my diagnosis. quick call to my daughter (GP Practice Mngr) who confirmed he was the No. 1 - so I rang and made an appointment.
The rooms were very upmarket and at a ONE STOP building I learned later that held the womens imaging centre, pathology laboratories, radiation facilities, chemotherapy treatment facilities and oncologists in the one building. The receptionists were very lovely and particularly personable and I was impressed by their personal attention.
After consultation with the Dr and date scheduled for surgery I was given a few documents to take home and read and sign and take them to the hospital before date of surgery. The out of pocket costs were huge. $3000-4000 right there. And I thought "well no time to get a second opinion or to get quotes so we'll get this done and question the accounts as we go along".
To my surprise MRI's that I had had for fifteen years that were free were no longer covered for women (over 50) diagnosed with BS. Bone density was not covered for 50+ with BC. Ultra sounds and biopsies were not covered and even as a pensioner and with top medical insurance the total bill within the two weeks of surgery and tests after came to $7000 out of pocket.
With the emotions of being newly diagnosed and coming to terms with the cancer, the new terminologies, new doctors, panic, rush I felt like id been used to sell services to me at any cost because I had no time to get second opinions. I did ask the receptionists at the breast surgeons rooms if the quote they had given me was correct given I was an and pensioner and usually had been bulk billed for all illness before this. Her reply was _ all people are charged the same across the board". A sort of take it or leave it attitude - which of course we can't really leave it as Id lost the list of other breast surgeons by this stage. The surgeon required full payment of the gap prior to admission to hospital for the surgery. The hospital also required any gap payment prior to admission.
The anaesthetist also charged well above the scheduled fee and required a gap payment prior to admission to surgery. South Coast Radiology required payment at the time of each and every test I had with them and when I received the refunds from Medicare was bitterly disappointed to find that I had paid in excess of $1000 just in gap payments to SCR.
The feelings of being ripped off at a time when I was extremely vulnerable made my anxiety and emotions stronger. But I felt compelled to be unable to complain and that I should be grateful. So the emotions were confusing - I was angry that the government had stopped subsidising MRI for women with breast cancer - WHY. Also the ultra sounds subsidies had been reduced severely for again seniors - why? I was angry that drug addicts seem to be able to access free needles and a clean place to shoot up and receive substitute drugs for a condition that is illegal to take drugs in the first place. The emotions and thoughts were racing around in my brain- Does this government want women with breast cancer over 50 to just die if they can't afford treatment? Why are we charged so much? When I had my hip replacement I was able to shop around for the best surgeon who happened to bulk bill everything. He was fabulous. Here I am now in a life threatening state of health with cancer and Im not afforded the time or any help with ways of reducing the costs of treatment and in fact feels like Im being punished for getting cancer and being a senior.
The more test I had the greater the cost and the higher the feelings of guilt for spending so much of our money we had to live on to top up our pension -
This added to my sadness and depression at having cancer and anger for it not being my fault but I felt like I was being punished - very emotional. And I wonder if anyone else had these feelings and thoughts going on adding to their distress at this very emotional time.
Wow long post again but I am questioning everything I am feeling and doing as I have never done this before and hopefully never have to do it again and wonder if I'm being "normal" or have I lost part of my mind somewhere along the way?
Yep I felt like the surgeon and the anaesthetist and SCR were taking advantage of me - US - women newly diagnosed with Breast cancer. And the governments health department seemed to be also disadvantaging US. No happy, Jan.
I was happy to find out that the Cancer centre bulk billed consultation and chemotherapy to Medicare and your private health fund - But that radiation could cost between $3500 and $15,000 depending on where you went etc. I manager to negotiate these costs with my people and will pay $140 per week out of pocket - which is affordable. Its weird they asked me to suggest a figure that Id be comfortable paying - and my head thought NOTHING is what id like to pay as a pensioner and with top medical cover, but again the guilt and obligation said you HAVE to pay something - you don't deserve it to be free. you do have SOME money - so we set $140 a week and due sera sera
Whats your thoughts?
Maybe a need a psychiatrist? Or some Valium or the like to slow down my brain? Just checking on others thoughts on the pricing etc.
This added to my sadness and depression at having cancer and anger for it not being my fault but I felt like I was being punished - very emotional. And I wonder if anyone else had these feelings and thoughts going on adding to their distress at this very emotional time.
Wow long post again but I am questioning everything I am feeling and doing as I have never done this before and hopefully never have to do it again and wonder if I'm being "normal" or have I lost part of my mind somewhere along the way?
Yep I felt like the surgeon and the anaesthetist and SCR were taking advantage of me - US - women newly diagnosed with Breast cancer. And the governments health department seemed to be also disadvantaging US. No happy, Jan.
I was happy to find out that the Cancer centre bulk billed consultation and chemotherapy to Medicare and your private health fund - But that radiation could cost between $3500 and $15,000 depending on where you went etc. I manager to negotiate these costs with my people and will pay $140 per week out of pocket - which is affordable. Its weird they asked me to suggest a figure that Id be comfortable paying - and my head thought NOTHING is what id like to pay as a pensioner and with top medical cover, but again the guilt and obligation said you HAVE to pay something - you don't deserve it to be free. you do have SOME money - so we set $140 a week and due sera sera
Whats your thoughts?
Maybe a need a psychiatrist? Or some Valium or the like to slow down my brain? Just checking on others thoughts on the pricing etc.
35 Replies
- June1952MemberThank you to all for your comments and especially the love and concern from Sandramj. As women we all do what we have to - and more - and aren't we good at juggling ?
I guess my main issue is the lack of finance ($15,000 pa is not a lot) although I have been advised I can get a health care card so that will help with some things. I rang the surgeon and oncologist but neither of them accept that - they always charge an out of pocket. Oh well. If I have more issues over time guess who won't be getting the 'repeat business',eh ?
I am glad we made the decision to move to a regional area (from rural) as there are at least support services down here, especially in time a day care centre for my partner which will give me a break. (I guess you read that a "I made the decision" as he just went along with the idea - over time). I knew a problem was brewing and figured we'd be better to move earlier than later rather than gt him more confused.
Like most of us BC ladies, we have worked all our lives and get no help where some people come into the country and get everything - not fair. Yeah, Di, don't you just love the 'over 50' scenario?
Sending all big hugs and thanks for being here to listen to my grumbles.
Summer :-) - mum2jjMember@sandramj. I thnk you are spot on in that there is the wrong assumption that because you have private health insurance you are wealthy. My husband and I are still working with two teenagers in the house. We are in no way wealthy. I thnk the letter to the Drs is a great idea. The breast care nurses when I finally caught up with them said it is often hard for them to catch up with private ladies. Sadly the nurses in the private chemo unit where I went were not very welcoming to them. I hope you follow the McGrath link that someone gave you. I found they are often very busy, but if I left a phone message they always got back to me. Hugs. Paula xx
- CassinaMemberYes, I would ask the surgeon to bulk bill, sometimes they will,I also chose the private for surgery but my fund covered all, I also paid for the MRI in the public system as it is not covered once you are diagnosed with breast cancer! I blame the current govt for some of these charges. I have however found the nursing care in the public system much better than the private as generally they are more experienced and knowledgeable
- primekMemberI had immediate recon in the public system. I did choose tissue expander though as plastic surgeon would mean delay and a breast surgeon can do the expander surgery. Amazing how we are told different things.
- gingerninjaMember
Hi there @sandramj
I am sorry that you are having to face this journey that is BC, but please feel welcomed here to talk, share, vent ask questions... I am still a newbie on this site - but I have found the support to absolutely invaluable to date.......the shared experiences from other brave women on this journey have been so helpful for me -and I hope that you find comfort from this site too x
I have to agree that I had a rude bloody shock when I learnt how expensive it was to have BC!!! from the moment of diagnosis the question I heard the most from the medical people was "do you have private health insurance?' ..well yes I do - but what should that matter. I have BC...it needs to be removed from my body.....let's just get it done...I am not going to quibble about getting my dr of choice - just get it out!!! I have shared the following out of understanding and shared frustration as I think this system really stinks!!!!!!
long story short.....having private health cover meant I was diagnosed on Friday and saw the surgeon the next Monday. ( given where I live I had only 2 surgeons to opt from and one of them was overseas at that time...but both work in the public and private system - hence it would have been either of them do my surgery regardless of my health cover)...my breast surgeon was beyond amazing!!!!! even as a private patient I have never seen, and will never see a bill from her.....she feels it is not right to charge women with breast cancer for live saving surgery......here here !! she felt I was an ideal candidate for immediate reconstruction with implants at the time of bilateral mastectomy and referred me on to a plastic and reconstructive surgeon ...again with private cover this happened quickly.....I felt comfortable with the procedure she explained and asked what my out of pockets would be??? hmmm...cue awkward silence in the room.....she said I would be emailed a quote.....but then also pushed me to book a date for surgery (as she was going overseas for 10 days very soon)......
so..I got the the quote.....the plastic surgeon does not participate in the no-gap scheme...so $5000 up front prior to surgery please......arhhhhh...WTF???? I went back to my breast surgeon and said nup - I want to go public please.... you can imagine my shock when she said that the mastectomy would be done in the same time frame, but under the public system I would not be able to have immediate reconstruction and would be looking at 12-18 months on the wait list (best case scenario).....psychologically I am not made for that kind of wait....at 40 yrs old, with a hubby, 3 kids, and working a management role full time I just wanted to get on with things and get back to a "new normal" as soon as I could.... so I swallowed my pride and asked my parents for a loan to facilitate the upfront payment...no big deal for many people, but I have a very strained relationship with my family, and as an only child with no other living relatives we had no other option but to ask. ( all I could think about was school fees, bills for my daughters braces, and driving lessons/car costs for our eldest child)...silly but real to me at the time.... of course my parents helped out...but my pride was wounded and I was already calculating a repayment plan before I hit the operating table....
throw in the $1200 bill from the anaesthetist which was required to be paid in full before surgery, and the excess bill for the hospital stay and I was getting pretty cranky and quickly broke!!!
I am have used up all of my sick leave, and am now rationing my fortnightly pay by using annual leave for one week and leave without pay for the next. Sounds silly but I really don't want to use all of my annual leave as I would love to take a week or 2 later in the year just to get away and chill - just to have a normal non cancer related break!! I need to go back to work sooner than I wanted too because of stupid $$$$
anyway that is my rant - I was just so shocked to realise that some doctors have no morals and are happy to profit from people who's lives have been turned upside down by cancer...no one asks for this!!!
I wish you all the very best on your journey ahead xxx
Sally
- Brenda5MemberI guess I was very lucky to move near the retirement capital of Hervey Bay who have their own special cancer care building and there is a scan centre on nearly every corner and most do bulk bill. My Tamoxifen isn't very expensive, I think its $28 from Chemist Warehouse for two months supply. My oncologist does me up annual repeats now and I only see him between a year and six monthly depending on how I am going. Costs me nothing to see the surgeon, oncologist or my GP who I chose also because he bulk bills. My local GP only bulk bills pensioners and I couldn't afford the gap as I am not a pensioner at only 54 and unemployed.
- DiMember@sandramj I fully understand where you are coming from. When I was first diagnosed with BC everything happened so quickly and I was thrown into a whirlwind of tests. I was 53 years old and too were told that because I was over 50 years old I was not subsidies for an MRI and I still have to pay for a mammogram and ultrasound. And bone density tests plus ongoing cancer preventative drugs. I do not have a health care card I work full time I pay taxes and I didn't choose to get breast cancer and cannot understand why because I am over 50 we do not get subsidised. Yes I do go through those same feelings as you sandramj.
Not hapoy .
di ☹️ - HarleeMember
I live on the Sunshine Coast in Queensland. Our situation has improved greatly this year with the opening of a new public hospital. It has a magnificent cancer centre where public patients can have surgery, chemo, radiation and their follow up all done in the one place.Summerhill38 said:Hi HarleyB
I wonder where you live ?
I think a big part of the problem (as sandrmj indicated) is that when we get our initial diagnosis we are in shock and we just can't keep up with what is happening. We don't know what questions we should be asking. We usually aren't familiar with all the different options for our treatment and we don't hear or misunderstand or forget half of what our doctors tell us. There is so much information to try and absorb while all the time your brain is screaming - NO this isn't really happening to me!! - sandramjMemberAnd Im not sure what Im one step closer to, might well be insanity, but whatever so be it....... One minute at a time, one hour at a time... whatever it takes. Summer Im so sorry to hear of your partners diagnosis - right on top of what you're dealing with is too much. Sending you hugs, courage, strength and patience with yourself to put one foot in front of the other - and rest whenever you want or need to. <3 <3
- sandramjMember