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
- melclarityMemberSummer, I think we all are LOL, honestly, especially if we sat down and looked at our lives and things that have happened and even now. You do wonder how you manage to put two words together, or just get on with things, but we do, somehow we do, no matter what we have on our plates. It is true, some get more than others, I sometimes feel Ive had a sign on my forehead saying PICK ME LOL!!! I need some more challenges. I guess I've learnt its not the challenges as much as how I try and deal with them that makes the difference.
Worry is absolutely not good correct! so I guess its looking to see if there are any slight things you can do to help that worry, most times our hands are tied which makes it even harder. We can only do so much, be kind to you too especially when youre dealing with so much. x Melinda - June1952MemberHi Melclarity
I RECKON I AM INSANE NOW !!! The sense of humour goes most days now. Worry takes over and that is not good for the BC either. What will be will be.
Summer :-) - melclarityMember@Summerhill38 I'm sorry to hear of your partner, that would be challenging. You know, if I didnt have a sense of humor for what Ive been through in life OMG LOL, I'd be mental by now. x Melinda
- June1952MemberHi HarleyB
I wonder where you live ? I am in regional Vic but was rural previously. I am sure there are big differences in treatment options and costs throughout Australia.
I was never even offered immediate reconstruction, let alone having the choice of both breasts off. I found out much later that the surgeon I went to does not do reconstruction (just chop chop) hence not being offered that - then he would not have got the job, eh ? Once the time came I even found the prosthesis people charged me more than the RRP ! Go figure.
Not being old enough for the pension and living on a combined 'wage' of $15,000 pa we do have to try to work out what is necessary - and seeing the surgeon so he can say every 6 months how wonderful his job was (Um ? It is xxxx ! Bet his wife would not accept such a crap job) then having to pay a huge out of pocket for his looking simply does not fall into the category of necessity.
Hi Melclarity
Unfortunately God is not helping me with any serenity ! He has now thrown in a partner being diagnosed with Dementia so I am feeling a bit let-down ! (Stop laughing !).
Hi again Sandra
Yes, do write that letter when you feel up to it. Anything might help the next person. I did speak with the surgeon's receptionist but her answer was that "that is what he charges". Sooooo - I don't go.
Same with the cost of Tamoxifen - if I die a bit earlier from not taking it then that is what is meant to be. The chemical companies get a heap out of us poor gals.
Thinking of you as you go through treatment. May you fly through it with no complications and with lots of emotional support.
Hugs to all Summer :-) - HarleeMemberI'm quite saddened to read these posts. I thought (obviously incorrectly!) that there was something called "Informed Financial Consent" in Australia that meant that doctors and hospitals were supposed to notify you - preferably in writing - an estimate of what your out of pocket expenses were likely to be prior to you agreeing to treatment. I also thought they were supposed to advise you of other options ie public hospitals.
My doctors and hospital all gave me (mostly written) estimates of my costs. I am always given a quote before I have any scans and most of the time I have been bulk billed even though I have gone private for all my treatment so far.
The only time I have felt any pressure at all is with the mammogram/ultrasound/tomosynthesis where I was told the mammogram and ultrasound could be bulk billed but the tomosynthesis was $150. I was reminded very strongly that the mammogram I had a few months before I found my lump did not detect it and so it would be a big risk not to have the tomosynthesis.
I agreed but I wondered how someone who couldn't afford the $150 would feel being told that? - melclarityMember
Sandra, this Quote was one my Mum used all the time, I grew up with it and even now that she has gone, it's something I and my family say all the time...NEVER has there been a more fitting Quote for life. x Melindasandramj said: - sandramjMemberThanks @Summerhill38 - Im pleased I'm not the only one who felt ripped off and again working from 15 paying taxes for my whole working life and now at 67 am on seniors pension and yet had to pay so much GAP. Yep I felt like I was an easy way to make some fast money, at a very vulnerable time. I wish Id known what I know now too. Im starting radiation next Monday and have haggled with the company to pay only $142.60 per week for 7 weeks - but still feel 'taken advantage of' Its hard to complain as I feel I should be grateful these people are there and able to perhaps save your life, but at the same time angry because they make so much money over and above what the medical benefits (public & private pay) e.g. Scheduled fee $900=. Charge $3500). It is really nice to know that people support us while we go through the emotions that come and go like changing winds. Hope you get to live to 96 in a healthy, happy and prosperous life too Summer. x :)
- June1952MemberHello Sandra
Do not feel alone. I read your posting and thought it was me writing it - your story is mine (and that of many others).
Breastscreen ladies are good but the surgeons who work for them sort of get priority, don't they ? The rush is the thing, no-one sits you down to quietly explain what should happen, how and the costs.
I have always thought it best to have private health insurance but really, what does it do except make us BC patients pay one hell of a lot more ? I wish I'd known what I know now - I would have gone public, not letting on I had private insurance. I guess, like you, the lack of knowledge and the need for quick decisions is just too hard.
Having worked from the age of 15 to 55 I figure (too late, the horse has bolted) that just maybe I deserved to be treated via the public purse and not end my life in debt and worry.
I can no longer afford to visit the surgeon or oncologist each 6 months so what will be will be. To me, it is just a money-making thing for them, no compassion - why can't they be happy with the Medicare money ? I used to worry but now i just think that if this whole BC scenario was not there I may just have died now knowing - goodness, isn't that what happened in the past ? How many ladies like my Mum, who died at 96, died not knowing they had a problem ?
You are in my thoughts and I hope you are able to get some support to get your through the bad times. We all have them.
Big hugs Summer :-) - Brenda5MemberFind your own local Mcgrath nurse on this link. https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
- sandramjMember