Forum Discussion

sunrise_sunset's avatar
sunrise_sunset
Member
6 months ago

Considering EndoPredict before accepting Chemo

Hi everyone, I did a search and this topic hasn't been mentioned in a while since 2023. The main difference seems to be that EndoPredict ($2980) is now eligible for partial Medicare rebate ($1103).
However, it is still a considerable cost for many of us. I'm having to decide whether to take the test and hope that maybe the outcome could be that Chemo is not of benefit to me. Going by what the medical oncologist told me it is doubtful that Chemo would not benefit me - the use of "aggressive" to describe my stage 3 cancer makes me think that. Though he did still mention the testing to me so I had a choice.
I'm torn and scared. With my previous cancer (liposarcoma) I didn't have Chemo so it is an unknown scary beast. My two main concerns with Chemo are the heart and bone damage risks.
I get that the decision to have the test is a very personal one and nobody can make that choice for me. For me it isn't just financial, the main choice is whether I consider Chemo is worth it. Even if the test comes out a low percentage for recurrence, is that enough for me to say no to Chemo? After all, the test is the risk of recurrence in 10 years and personally, I'm now on cancer number 2 (different types) in a 14 year period.
Have many of you have taken the test? Or would you take it now that it is partially rebated by Medicare? 
Thank you for reading and being sounding boards.
chemotherapy
early-breast-cancer
treatment-decisions
  • arpie's avatar
    arpie
    Member
    6 months ago
    That’s great that it is now partially covered by Medicare, @sunrise_sunset …. I reckon it ALL should be, as the cost of having it done is often less than the cost of having just one dose of the chemo - so would be financially beneficial to Medicare if some people DON’T need chemo (PLUS not having to go thru all the treatments & side effects!)  I’m not an accountant, but even I can work that one out!  ;)

    Golly Gosh … that is a curly question, isn’t it, given the 14 year gap in your diagnoses.  I am guessing you may be leaning more ‘toward’ having it done, than not?  Would that be right?  And if you DID go ahead with chemo, it may well knock the recurrence chances of the Liposarcoma as well?   We had a similar test done for my husband’s cancer (his Mets recurrence was 10 years after the initial diagnosis/surgery/chemo) - it cost $5000 and was sent to the USA and it also gave the names of specific chemos that would suit his treatment but sadly none of those treatments were available in Australia at the time  :( 

    Jump onto this link - it has links to others who’ve either had or considered having Endopredict (you put whatever you are looking for in the ‘search’ area & click ‘newest’ ….). There may be some info there that can help you decide.
    https://onlinenetwork.bcna.org.au/search?domain=all_content&query=endopredict&sort=-dateInserted&scope=site&source=community

    Take care & all the best with your decision making xx
  • Afraser's avatar
    Afraser
    Member
    6 months ago
    Dear @sunrise_sunset

    A question to your oncologist that’s been suggested is ‘what would you recommend to your spouse’. It’s your choice but expert opinion matters too. Are there any particular reasons why chemo would affect bone or heart issues for you? I did get an arrhythmia during treatment (age and some high blood pressure probably contributed) but 12 years on, my heart is functioning remarkably well. My bone density has been affected but that was 10 years of letrozole, not chemo. 

    Best wishes whatever you decide.
  • sunrise_sunset's avatar
    sunrise_sunset
    Member
    5 months ago
    Thank you @arpie for the support and sharing of your husband's story. I will also read the posts on the link you sent. To be honest, I keep going back and forth on my decision to have it or not to have it. You are right about it being a consideration that the chemo could be of help against previous cancer. I totally agree about the rebate!

    @Afraser thank you for the suggested question for my oncologist and sharing your experience. My concerns re heart and bone density are general in nature as I thankfully do not have previous dispositions but having never had issues with my heart or bones (apart from serious broken bone injury) it is very scary to consider.
  • arpie's avatar
    arpie
    Member
    5 months ago
    Message sent @sunrise_sunset  -  look for the envelope beside your ‘icon’ ;) 

    Try not to get too far ahead of yourself with the ‘what ifs’ as it will only do your brain in!  And they will probably never happen to you anyway, chemo or not.  
    (I was diagnosed with a heart arrhythmia a year or two back & I didn’t have chemo - but my family has a history of heart issues) and it is controlled by 1/2 a tablet, when needed.  I’m in my 70s now, so I guess I should expect something to start going wonky!    ….   
    Certain chemos ‘may’ impact the heart but it is not all of them … I’m not sure I’ve heard about bone issues tho - other than it can be where Mets may locate themselves    
    And we all should be on some sort of calcium tablets anyway …. As menopause is probably more likely to cause bone damage/breaks than anything …  

    Consider Ringing our helpline & have a chat with them about it ….. 1800 500 258 - Mon-Fri 9-5pm  Xx

    take care
  • scram's avatar
    scram
    Member
    5 months ago
    I found this thread an interesting read.  It would be good to avoid chemo if possible, my last cancer treatment was 10 years ago and included 6 rounds of weekly chemo at the same time as 6 weeks of daily (mon to Fri) radiotherapy.  Therefore I am concerned about heart and bone health. 
    It sounds like endopredict tests are done on the tumour or biopsy, as I have recently had surgery (lumpectomy and nodes removed), I assume that it’s too late to request this test.  Am I incorrect in my understanding that the pathology tests that will be done will assist in making decisions in regard to further treatments. 


  • arpie's avatar
    arpie
    Member
    5 months ago
    @scram - you could still ask your Oncologist about the test - as they do use some of the tumour that was removed.   I understand that bits of the tumours are stored for some years .... even up to 10 - in case further testing is needed!
    Has Your Onc spoken to you about your ongoing treatment yet?  Have they suggested chemo?
    Yes, the pathology usually dictates the ongoing treatment - and the Endopredict can help, re whether chemo is needed or not.
  • scram's avatar
    scram
    Member
    5 months ago
    Meeting with surgeon for review next week and planning for next stage. Have been told most likely chemo, radio and meds for 10 years. I will ask about the endopredict.  Thanks again for the info. 
  • sunrise_sunset's avatar
    sunrise_sunset
    Member
    5 months ago
    Thank you everyone for all of your comments and support.
    I thought I would place an update here so that the community knows what my choice was and why. This may or may not help someone else down the track.

    It's been an overwhelming few days but I made my decision to not have the test as basically chemo would always be needed for my situation. It's a fairly aggressive cancer and I wasn't willing to take the chance that there was a mistake made in its determination. So why spend the money when I have other financial needs? I did ask my oncologist the familial question which is when he told me that given what he knew of my cancer he would be recommending the chemo to family.

    So when I looked at the likelihood that the Endopredict test would come back with a negative or low percentage on the need for chemotherapy, I decided to not take the test. I thought about whether I would still go ahead with chemo if the percentage was low and I factored in that this is my second type of cancer in 14 years.

    My gut feeling was yes, I would go ahead with chemo despite how scared of side effects I would be. Because the test would only be looking at the DNA and likely recurrence in 10 years of my current cancer and could not predict a recurrence of my other cancer or any other cancer. So, was it best to take the "poison pill" of chemo as a preventative? My answer was yes and I have determined to also make lifestyle changes.

    That's it, it is not an easy decision to make for any of us. If my cancer had been a different grade and less aggressive I may have taken a chance but I won't let myself think on those 'what ifs' and regret. I need to focus now on equipping myself the best I can for the treatments ahead. I start chemo on 15 November and then in the new year sometime I will have radiation. I'm not sure at what stage yet the hormone suppression will start.
  • arpie's avatar
    arpie
    Member
    5 months ago
    Well done, @sunrise_sunset - it is not always easy to make these decisions but your reasonings are sound - and you are happy with your choice.  xx. 

    Wishing you all the best - let us know which chemo is being recommended for you - I am sure someone will have been 'on it' and be able to guide you re coping (hopefully preventing too many) side effects xx

    take care