Oncotype Testing

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. 

Oh my goodness what a decision to have to make.   If you don't mind me asking what did you do?

@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

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.  

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!

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.

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

JUST ADDING MY 2cents WORTH (Rant) to this thread
Oncotype testing wasn’t even offered to me might not have been around in 2016 when i was first diagnosed. Not that i had or have that sort of cash to spare anyway 
i did the 1st chemo and 8 rounds of taxol before pn reared its ugly head. 

Just an update -  Oncotype testing came back saying no Chemo needed.  Big relief!

Woohoo! That is awesome news, what a relief!