Emotions and costs of BC
sandramj
Member Posts: 253 ✭
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.
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Comments
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Hence why I chose to go public. Not being a pensioner and working meant I couldn't even get a health care card, even when I couldn't work (as centrelink looks back 2 years not just now). Alas the system sucks and you are not alone for feeling ripped off.4
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True, @primek I'm a public patient with no concessions as well and it's cost me very little apart from a PET scan $900, bone scan $90. The drug costs are a major problem, but there's no getting around that.
I'm just finishing a course of radiotherapy that was bulk billed. 10 years ago when I had my first BC, that treatment was going to cost me $6500. I didn't have the money, so didn't have the treatment. You've got to wonder if that treatment might have saved the public system the cost of treating my recurrence if I'd been able to have it.
Having a tumour the size of a walnut meant that I got bumped up the surgery list so my treatment was prompt. I don't need any of the stuff that has a long wait, like reconstructions. Having all treatment as a private patient sounds like a very expensive exercise, and they wonder why people are dumping private health cover.
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@sandramj I think everything you said is very valid and normal! Youre not going mad! Ive been doing this 6 years, I have private health cover, however I have out of pocket if I see my Surgeon or Oncologist, for surgery I have an excess to pay plus Anaesthetist is ridiculous always!
In 2011 I did radiation through public, it was billed through medicare but was odd, I think I had to pay up front then they paid it back, was weird. 2015 more surgery and chemo, I went private but chemo cost nothing, nor imaging of any sort. I also have a health care card as am a single parent and low income earner which helped with prescriptions.
My mastectomy/diep flap recon, my Surgeon did it through a public hospital together with my Plastic Surgeon to save money as otherwise my quote from Plastics alone I would have been $10,000 out of pocket.
So I actually use both, my revision will be public as well but the beauty of my private surgeons.
It is BS, but your only option is to switch into public. xx Melinda2 -
My first diagnosis was 6 years ago and I was recently diagnosed with mets. To this day the only things I have paid for are the hormone tablets and zolodex all which I got on the PBS. I am a public patient and my care has been phenomenal.5
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@sandramj, breast cancer diagnosis and going through the treatment has brought up a bundle of emotions for me, and I can definitely say that anger is one of them. I am currently seeing a psychologist through the public hospital cancer centre, even though I am mostly going through the private system.
The change to my life, ability to work, surgery options, mortality and many other issues have become such issues that I had to see someone to work through them for my own sanity.
My breast surgeon and oncologist often request bulk billing for me, and have done so for the bone and body scans, and just recently for echocardiogram and liver and chest CT scans.
I will have to pay for the breast MRI.
I did have approx $3,000 out of pockets for my lumpectomy surgery with breast reduction at the same time, and have to go back for a mastectomy so will probably have that again.
The surgeon and anaethetist who put my portacath in billed Medicare and my health fund direct, there were no out of pocket expenses.
I agree, when you are diagnosed you just want the bloody thing taken out, shopping around for the best price is not a priority, getting fast help from a highly regarded surgeon is.
Ask about bulk billing when you are being given referrals for the scans and tests.
My Oncologist has also mentioned that he can request bulk billing from the private radiation provider though I have yet to test that offer, and will switch to public if it is not an option.
I don't know which health fund you are in, but my fund covers all "in hospital" expenses after the $500 excess has been paid. That doesn't include the surgeon, anaethetist or pathology for the breast surgery though. They wanted the excess paid up front but nothing else.
Hoping you can find some satisfactory answers to your problems and ways to minimise the additional stress of finances to add to your worries.
Jennie
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@sandramj did anyone ever suggest you go public? I did have private surgery and chemo but then went public for radiation. I am trying to read through your post to see if you have started radiation yet? If you haven't then maybe get a referral to go public. You can still do this even if you have private health insurance. You are right it is a very confusing time and also can become very costly. See if you can arrange for the radiation publically.
Hugs
Paula xxx1 -
@sandramj I went private and did not regret it. My out of pocket costs were similar.I think its hard to do anything differently when diagnosed. You were not in a position to question and evaluate everything. You did the best you could. For radiotherapy I went to the public system very good did not regret that either.
I too felt guilty about the costs of treatment. Not only do we have cancer but we have to pay a huge price to get well.
The costs are what they are in some cases probably not fair. With breast cancer most ladies do not have time to breathe before everything happens.
You sound normal just frustrated at a situation you are put in that you neither wanted or asked for.
As to what did you do to deserve it well actually nothing.
It is amazing that in this point in time we have absolutely no clue as to why some people get cancer and others dont.
Weird isnt it!!!!!!
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I know how you feel. I have private health cover and I find the cost of scans and X-rays is particularly high. It's always worth asking. I was only charged $650 for radiotherapy for 6 weeks as a private patient, after asking if it could be cheaper. Chemo was fully covered.
My doctors have never charged me an excess, even for ongoing reconstruction. I just pay $500 excess hospital cover. I think it's the scans that cost me a lot. I like being able to choose my doctor, hospital and have more control over my treatment. For me, health insurance is essential. I have had all of my treatment in the same hospital for over 2 1/2 years with the same team. That's why I have private cover, but I always ask about the cost and the options. You are the client, stand up for your rights. All the best. x1 -
Hi there lovely lady you are not alone we have all felt or are feeling this way, I went totally public and haven't paid a cent for any surgery, treatment or scans so far and I finished chemo in October. I see my oncologist every 3 months and Redcliffe hospital in qld and that's bulk billed too. I should tell you I took my other boob off as a preventative measure ( my choice) went private patient public hospital for that at Redcliffe too and only paid around $350 for the bed overnight and the gap of around $280 for the surgeon. Maybe you should look at your public hospital options where you are as theres no way we could of afforded that either. Have you checked in with your super? I wasn't able to claim any money for financial hardship but was allowed to use it for medical expenses but because I went public there weren't any but because you are going private you should be able too. Ill PM you about it. Margie
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When I first got diagnosed in October 2015, I was told go public even if you do have health insurance. All my scans and surgery back then was no out of pocket expense which was good since neither my hubby or I were working and we aren't old enough for an aged pension. We used to buy and renovate and rent out houses but no way I can physically or mentally do that now. I just had a follow up ultrasound, thru the public hospital who works in with the private hospital and the ultrasound was free for me. Not sure how we'd cope if we had to pay for any tests. Heres something to bolster up your depression. We all care for you.
http://https//www.youtube.com/watch?v=rOr38bGCZto&feature=youtu.be&utm_source=ThePianoGuys&utm_campaign=1b48ff75f8-celloopa&utm_medium=email&utm_term=0_005ec3cc31-1b48ff75f8-15139069&goal=0_005ec3cc31-1b48ff75f8-15139069&mc_cid=1b48ff75f8&mc_eid=3dff6cb11c 1 -
I was pretty much the same as @mum2jj in that I had private health cover, so had surgery and chemo at a private hospital, then had radio at a public hospital (where I work). I had no out of pocket for chemo or radio, and just the excess for hospital, surgeon, and anaesthetist. My surgeon actually organised for me to have a CT whilst in hospital, so that it was covered by the hospital excess. Any tests you have in hospital are covered by your hospital excess I believe. The oncologist also organised my visits to her to be on the same day as chemo, so those visits were also covered as part of my day oncology (chemo) treatment for that day. I agree at times it seems very random what is covered or not, especially when it comes to tests, and if you are lucky enough to get someone who can utilise the system to give you maximum advantage, it can really make a difference. Also, I didn't find any difference being treated at a private hospital versus a public hospital, though the sandwiches were nicer at the private! Good luck with your treatment, it can be challenging even when things goes smoothly and you have millions in the bank (so I hear).
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thank you so much ladies. I felt guilty about complaining about the cost when cancer is involved. But wonder how other people managed, coped or didn't. Ive just had another call from Genesis Cancer Care this morning yet again postponing my radiation as their new computer system couldn't transport my measurements across - so have test run on Monday before the actual radiation first treatment. That's ok with me as it means I get another day "OFF".
You have each contributed so much info on this I think I will look at going through the public system if necessary later on. My daughter-in-law works in the local public hospital and says they do breast surgeries all the time and even give out the FREE bras. Seems like if you have private health insurance it is presumed you can afford to pay whatever for the gap payments. If only these people realise that my hubby and I are on aged pensions and whilst we have a little money put away for a 'rainy day' or holidays and the like - it is annoying that doctors can take advantage of us at a time of when we are most vulnerable.
I may write to my surgeon and anaesthetist just explaining my situation just in case they were not aware of it. Im not after a refund - but that they may ask the next patient what their own personal situation is and show a little more understanding in the financial issues as well as medical.2 -
Hi @sandramj you can get the free Berlei bras through your breast cancer nurse. They have a post surgery care kit. See if there is one in your area, they often work from the public hospital, but care for everyone affected by breast cancer.1
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thank you Unicornkisses. I wasn't offered any FREE bras but the physio from the breast surgeons rooms showed me where I could buy them at Target for $20-29. I will have to find out about a breast care nurse in the area as there are questions I have to ask but because I have the surgeon, oncologist and now the radiation oncologist not sure who to go to or through. THANK YOU.0
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Hi @sandramj
I thought I would just jump in here to let you know about our My Care Kit. You can definitely talk to your breast care nurse about ordering one of our My Care Kit's, which they can order on your behalf. Otherwise, if you're not able to see a breast care nurse you can always call us on 1800 500 258 or send me a PM (private message) and we can arrange one for you.
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