Emotions and costs of BC

sandramj

Brenda5

Find your own local Mcgrath nurse on this link. https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

June1952

Hello 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  :-)

sandramj

Thanks @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

melclarity

sandramj said:

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 Melinda

Harlee

I'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?

June1952

Hi 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  :-)

melclarity

@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

June1952

Hi 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  :-)

melclarity

Summer, 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

sandramj

sandramj

And 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.      

Harlee

Summerhill38 said:

Hi HarleyB
I wonder where you live ?  

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.
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!!

Di

@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 ☹️

Brenda5

I 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.