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Oncotype Testing

SylviaMSylviaM Mid North CoastMember Posts: 13
I was diagnosed with Early Cancer - Oestrogen Positive  - 3 February 2022.  Since then I have had surgery to remove the lump.

I saw my oncologist this week for a treatment plan.  Due to my history, Hodgkins lymphoma 1998 and non Hodgkins lymphoma 2008 , sister and other family members with Breast Cancer, and the markers found in my lump she wasn't sure if Chemo would be a beneficial option.  She has suggested Oncotype Testing to give a 100% guarantee that Chemo is needed or not.  I have no worries with this as I'd rather not have chemo if it is not needed.  What go me mad was the cost of this test $5000!!!!  There is no Medicare rebate and not covered by my Health Fund,  I was fortunate that we were able to juggle a few things around to pay for this - but what about those who can't afford this.  When the information provided isn't that clear and it's a matter of a coin toss whether to have or not have chemo what would you do?  I know it makes it sound like my oncologist isn't giving me clear advice but she is very and good and has provided me with lots of information, hence taking the option to do this testing.  
Cancer is hard enough as it is without the added financial strain of such an expensive test.  There are so many other subsidised tests and programs why isn't this one.  Apparently we are the only Western Nation where the government doesn't provide a rebate.  
I have wrote to the Minister for Health a strongly worded letter and suggest that everyone do the same.
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Comments

  • FLCloverFLClover Sydney Member Posts: 1,426
    Hello. I was also told to do this test because it was a ‘grey area’ for me. There was no way I could afford it, so I told my onco to make the decision based on info he already had. He still made me choose.
    I’m also very annoyed that this test is so expensive, especially since it’s free in other countries. It’s not for a light decision either. It’s just a disgrace. 
  • SylviaMSylviaM Mid North CoastMember Posts: 13
    Oh my goodness what a decision to have to make.   If you don't mind me asking what did you do?
  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    edited March 17
    @SylviaM - I am sorry you are in this situation - but welcome to our 'exclusive club' that no-one ever thought they'd have to join.   Whack up any question & we'll do our best to support you xx

    We had to have genome testing for my husband's cancer & it cost about the same, but luckily, we had some spare cash, so went ahead with it.   Sometimes, some of the treatments are also not covered on PBS yet & require payments too ... :( 

     it really is shocking that there is no rebate as i believe this test should be the first one done on patients, not reliant on your ability to pay for it!  As when this test is done, it will identify what treatment will be most beneficial for you, straight up - which in the long term, will save the Gov on paying for useless treatment 'on a guess' or on other people's protocols was in the past, which is basically how they currently 'guess it' ...... 

    There ARE some wonderful beneficial philanthropic groups out there that may be able to help with payments that put pressure on you, even Council Fees, etc- Can Assist, Cancer Council are 2 - Do you have access to a Social Worker at your Cancer Centre?  I see you are in the Mid North Coast area, as am I - I had my radiation treatment at Port Mac Cancer Centre, where I had a huge meltdown during my radiation - and the Social Worker arranged for a payment to help me out (when I got a surprise $500 invoice for my tumour pathology that wasn't covered by medicare or anything else) .... This was a huge shock as I thought all these necessary tests were 'covered' & it tipped me over the edge for a while!  Feel free to message me, if you like, on anything. (click on my name & then on the envelope.)

    Being 'rural - you are also eligible to claim for travel & accommodation rebates for petrol & motel costs when you have to travel more than 200k in one week for multiple trips of less than 100k each way, or single trips that are in excess of 100k each way.  You need your GP and/or Specialist to sign off the initial referral form ... and can claim online.  (See guidelines form at the bottom)

    Jump onto this thread for a lot of general info on the forum & different areas you may be interested in (outside of BC ...) 
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care & all the best for your ongoing treatment  xx
  • SylviaMSylviaM Mid North CoastMember Posts: 13
    Thank you so much Arpie for the useful information.  I'll be having my treatment at Port Mac Cancer center also, once I know what it is.  

  • StrongCoffeeStrongCoffee Member Posts: 107
    I was also in the 'grey zone' for chemo decisions and had the EndoPredict testing. It was $3000, also with no rebates etc. And it really struck me how so many women just wouldn't have this option due to $$

    For me, as soon as it came back saying chemo would not have much benefit, it paid for itself. I'd already run my sick leave dry recovering from surgery, so chemo would have cost me thousands in lost income.

    It'sa shame the government don't see it that way, as me working means tax for them. Me not working means I would need financial support from them. Overall, if I needed eg. 16 weeks off chemo, it would cost the government a lot more than $3k!

    I did read up, and it seems there is a lot of concern about this expensive test being given to people who don't need it. But the criteria to be deemed suitable for the test is quite narrow . It's like they just assume every BC patient will have the test and base their sums on that!
  • SylviaMSylviaM Mid North CoastMember Posts: 13
    I think I would of preferred the $3000 option.  I am still waiting on  my results 10 more days.  I have my fingers crossed mine say the same thing, no chemo required.

    I agree it is so wrong that many do not have this option due to $$. I really felt I had no choice after undergoing a regime of very strong Chemo 14 years ago - I just didn't want to risk further complications down the track if it isn't necessary.  Being told I had BC, although early stage, was hard enough. I would of thought it would be cheaper  for the government to subsidies Genome Testing rather than then cost of chemo for patients who do not need it.  My only hope is that is enough women write to the Health Minister if might one day down the track be included in the PBS.

    I hope you have recovered well after your treatment.
  • FTAFTA Perth, WAMember Posts: 9
    Hi SylviaM, I couldn’t agree with you more. I took the Oncotype test in September 2021 with hope that I would not need chemo. It was a hard decision due to the obvious cost involved, I paid exactly $5,000 none of which was covered. I received the results 3 weeks later and I graded higher in recurrence than what was expected by my Oncology team. It was disheartening to have gone through the test and be told I needed chemo anyway… It’s absurd that such a test could help patients avoid the harsh physical and emotional effects of chemo alongside the time & costs involved and it is not covered by Medicare. I was advised that Oncology teams have been arguing to change this and it is all to do with government, politics, pharmaceutical body. Not many can easily afford this and it is crushing to know it could have helped so many people.
    All the very best to you x
  • SylviaMSylviaM Mid North CoastMember Posts: 13
    Just an update -  Oncotype testing came back saying no Chemo needed.  Big relief!
  • StrongCoffeeStrongCoffee Member Posts: 107
    Woohoo! That is awesome news, what a relief!
  • Keeping_positive1Keeping_positive1 Member Posts: 381
    Yippee, so pleased to hear your good news.  :)
  • Keeping_positive1Keeping_positive1 Member Posts: 381
    edited April 19
    It pees me off no end when I hear some people sprout we have the best free health system in the world.  We clearly do not!  We are 10 years behind the USA with the latest breast cancer treatments for example.  We also waited a very long time to have the 3D mammograms available to women as a first screening point!  

    It was clear for me that I needed chemo as was in the lymph nodes, but if I had to make a decision myself I would not have been able at the time to pay for an oncotype test, and I would have taken the chemo, and perhaps unnecessarily cause immuno compromised issues!  There are other women and men who also would be in a similar boat to me.  I know money doesn't buy health, but it can sure help with getting the best treatment, or avoiding unnecessary treatment.  Very grateful I was able to get the treatment I required, but still have compassion for those that simply cannot have this oncotype test because of financial barriers at the time.

    I agree we should all write to the Health Minister and local member!
  • SylviaMSylviaM Mid North CoastMember Posts: 13
    @Keeping_positive1 As to date I have heard nothing from the Health Minister & doubt I will.

    Our health system does have a long way to go but I am so grateful for what we do have.  Finding the money for the oncotype wasn't easy and I can imagine that many people would be in the same boat.  The fact that there are so many illnesses for which research is so far behind is frustrating.  

    We can only hope that with all the promises being made by politicians they might find it within themselves to dedicate more money to funding and improving the health care system.
  • Keeping_positive1Keeping_positive1 Member Posts: 381
    @SylviaM I am very grateful also, but good we don't get complacent and brag how great our system is, it clearly isn't great for all Australians.  So pleased you are proactive and wrote to the Health Minister, because many wouldn't do that if it isn't of personal concern to them.  You have a big heart :)  xx
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 238
    Although our health service here in Australia could do with a lot more government funding to get us access to all of the drugs and tests that are available in the US, it is worth remember that not every American has such access! It is only those Americans who can afford health insurance that get this access (and even some insurance don't provide access to everything). I would much rather be looked after in a health system that at least tries hard to achieve equity of access. I am looking forward to seeing if there is any new money put aside for health in the election promises (I think I will be disappointed though)!
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