Forum Discussion

PetraSminsk's avatar
5 years ago

Chemo test confusion

Friends saw on Sunrise yesterday morning a story that a dr has started a petition that has thousdands of signatures to get the government to fund this test that costs a lot that will show whether chemo is needed or not after surgery.  I watched it on the Sunrise facebook page but I am really confused and worried.  Mum just had surgery and is seeing her surgeon again in the next couple of days to discuss maybe radiotherapy and chemo.  Mum is petrified of the chemo and of all thing losing her hair! -  should I mention this test if I cant afford all this money to pay for it?  The video showes the test is called Oncotype.  What should I do

13 Replies

  • Bloody iPad gremlins (click on The little wheel above the ‘time’ - it allows you 15 mins to edit your post - and I just found this after I ran out of time! Grrr).....

    “keep in coming bract” should have been “keep coming back”! ;) 

    @Sister   @kmakm .... you had the genome tests done?

  • There are a few of these types of testing, and Oncotype is one of them. A sample of the tumour is tested to see if it's a tumour which is fast growing or not as well as other tests checking the genetic structure. Not all breast cancers benefit from these tests, with some, the initial biopsy answers those questions. I've read on this site, and another, of a number of people who have had the test with the large cost, and extra waiting...which has been hugely stressful, only to be told that they are in a "grey area" and that they then have to make a decision based on percentages. The problem with percentages, is that you don't know ahead of time which side of the line you fall on. Say the test is done, and then let's say the reply is that in their view, chemotherapy would only add an extra 5% that the cancer will not return. Then say that, based on those seemingly small percentages, the person chooses not to have the chemo. Now lets say the cancer does indeed return...would you be wishing you had had the chemo...perhaps you would have been one of those 5%...but now it's stage 4 and in your liver and bones. Would you be saying "Que Sera Sera?" Cancer treatment is all percentages, X % for surgery...Y% for chemo and Z% for radiotherapy and they all add up. I've used this example before, but you're new, so I guess you may not have read it, but here goes. If you saw a dress shop offering a discount of 5% on all summer dresses, you might say "Ho hum" and walk on by...not very much worth getting excited by. But, if you opened up your morning paper, and saw that a crazed gunman had entered a large city high school with 1000 pupils and had shot dead 5% of the pupils...that would be 50 dead kids, and would probably then not be seen as a small percentage.
  • First up, well done for supporting your Mum, @PetraSminsk .  I hope she is recovering well.  It is vital to have family support ... if you go with her to her appts (and I hope someone does, specially for the pathology results this week), maybe record them on your phone as it is hard to remember everything that is said.

    I agree that it should be made available early to all diagnosed with cancer as it will streamline the choices and give targeted therapy instead of just choosing ‘the usual’ ...  

    Not everyone loses their hair ... they try to target it for the best results with the least side effects .... the biopsy results will determine her ongoing treatment plan.

    The Oncotype DX test is based on genomic science. While genomics and genetics may sound similar, and are indeed related, they focus on different information. Genetics can help to tell you your risk for getting cancer, while genomics can help once you have cancer to choose your course of care.

    so if she DID get it done, I’d go with a trusted Aussie company, as they would only recommend already approved drugs .... tho .... there are also many trials being done .... maybe mention that to the surgeon.  

    Ask about Immunotherapy as well? These are drugs that work well with some cancers, even putting people into complete remission!  Some are given the drugs on compassionate grounds too, either cheaper or free, as they can be very expensive. For example,  If she is Her2-positive ...  she may be able to go onto Herceptin (depending on her pathology results.) 

    There are a few different ‘brand’ genome tests available that check the DNA of the cancer to see if it has mutated from the ‘original’ ... and they then suggest specific drugs to combat it, if there are any.  The tests are usually about $5000 - and eventually will be subsidised ... just not right now. :(

    We had it done for my husband in Jan (in the USA) but the available drugs were not approved for use in Australia. So whilst it didn’t help him, as such, it may help someone else further down the track when the drugs are finally approved. 

    It is a scary time for you, your Mum and the whole family and friends .... keep in coming bract and ask any questions and we will help if we can.  Just knowing we are here to help, may ease the journey for her.  Does she use the computer much? She may like to join herself.

    take care, and let us know how she goes after seeing the surgeon.  

    You are not alone ... lean on us xx