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Nards's avatar
Nards
Member
10 years ago

More waiting...Ontoctype DX

Hi All

I have posted once before, with my "why me" moment and thought I would take a moment whilst I sit through yet another waiting period, to introduce myself and my journey so far...

On the 3rd March I awoke with an overwhelming feeling of dread, nothing I had ever felt before, obviously my body telling me to pay attention.  That night I found a lump in my breast and booked to see my Dr the next day.  From there it was a whirlwind...ultrasound, mammogram, biopsy, floods of emotions and a long weekend to await the dreaded results.  On the 8th March I was given the diagnosis of a grade 3 invasive breast cancer.  

On the 15th March  (12 days after finding the lump) I had the 20mm tumour removed and a sentinel node biopsy (6 nodes).  Thankfully the margins were clear as were the lymph nodes.  Woohoo!!  The news that was harder to digest was that because of my age (39) and the aggressiveness of the tumour, they would be recommending chemo, radiation and hormone therapy.  I was prepared for the latter but not for the chemo!  Nevertheless, I readied myself for the next battle!

Yesterday we met with the medical oncologist to discuss the chemotherapy; 4 cycles.  As I expressed my concerns with chemo, she suggested considering the Oncotype DX test, which I had not previously heard of.  Although it has taken me a little while to wrap my mind around it, I think now that it may be the best move, despite the blow to the bank balance!  High result = chemo with no doubt if I am making the right choice, intermediate result = I probably should have chemo.  This was the tricky one for me -  low result = no chemo with no doubt if I am making the right choice - or would I still have doubt??  

Don't get me wrong, I definitely would avoid chemo if I could, but I also have two young children that I want to see grow up and I will not jeopardise my health.  I will do whatever I need to do to make sure I am here for my girls.

I would love to hear from other people who have experience or knowledge of the Oncotype DX test.  I am slowly wrapping my head around that low result - chemo would be of no benefit for me - right?  Now just to wait out the 2 weeks for my test results.  More waiting!!

Thanks and peace and relaxation to you all. Xxx

13 Replies

  • Jacqui_p's avatar
    Jacqui_p
    Member
    10 years ago

    Yep not sure how the negative result works either! Maybe takes into account the negative effects of chemo that may effect your overall survival. Anyway so the test has now gone up $500 in 16 months. Hopefully all the lobbying BCNA is doing will pay off and it will become free in Australia like it is in the US and UK. Yeh I figured it was money well spent too. Good luck

  • Nards's avatar
    Nards
    Member
    10 years ago

    Wow that was a  great present!  I bet you did not expect a negative effect!  I really did not think that was possible...I thought best case scenario would be a slightly lower percentage but certainly not higher!  The price must have increased as we paid $4500.  Money well spent to save us a tough decision.  Thanks. X

  • Nards's avatar
    Nards
    Member
    10 years ago

    We are on the same page...we too will go ahead if it is mid or high but at least we know that it was needed.  Our results are due back the start of the week following yours so I will keep in touch.  X

  • primek's avatar
    primek
    Member
    10 years ago

    Reading a bit more re the testing it is not offrred to her2 pos breast cancers

  • San-Dee's avatar
    San-Dee
    Member
    10 years ago

    Hello again Nards,

    We have decided that if the test comes back mid range or high, I will have chemo. So many numbers and stats these doctors give you, I get lost. Thank heavens my husband is a numbers man! I have just returned from my first consult with the radiation oncologist and he said the Oncotype test usually takes about 2 weeks, which is what the medical onc said. So we hope to have the results by the end of next week. It seems a lifetime away at the moment. I know what you must be going through as well, so I'll keep everything crossed for you.

    Hugs

    San-Dee

     

  • Jacqui_p's avatar
    Jacqui_p
    Member
    10 years ago

    Hi Nards

    I had the Oncotype test in November 2014 and the results came in just before Xmas which ended up being the best Xmas present. I had a low score of 9 so my surgeon said definitely no chemo for you. The graph showed I had a risk of recurrence of 9% after 5 years of tamoxifen and if I had chemo + tamoxifen my recurrence risk was 11% so a negative effect. Before this I was borderline for chemo, 45 years of age, a 19mm tumour, 90% grade 1 with a bit of grade 2 thrown in. Also 90% ER and PR +. The Oncotype test really is good so you know that you are making the right decision. I had decided beforehand that if my score was intermediate (18-30) I was going to do chemo. Good luck with your results. I hope the $4000 was money well spent! Jacqui

  • Nards's avatar
    Nards
    Member
    10 years ago

    Hi Ladies

    I did think that I would be looking at graphs and getting percentages yesterday but according to my oncologist the program was being updated so we did not have access at that time.  Is there somewhere online that I can find that myself?  I do think that with those stats I would go ahead too - small pain for big gain.  I wish you both all the best on your journey. 

    X

  • Nards's avatar
    Nards
    Member
    10 years ago

    Thanks San-Dee

    I agree wholeheartedly.  We obviously want to do all we can but if we can avoid it I'm sure our bodies will thank us for it!  When are you expecting your results back? Good luck and keep in touch.

    x