Forum Discussion

DarleneC's avatar
DarleneC
Member
11 years ago

Oncotype DX - great help

Hi - I was diagnosed in February 2014 and had surgery in March. The tumour was removed - 14mm with clear margins; but the dyes did not track to a sentinel node so the surgeon took a sample of nodes.

The sample was 6 nodes and they found a tiny bit of cancer in 1 node - so classified as Grade 2 and chemo recommended. The cancer was ER+, PR+ HER2-. My oncologist was reluctant to go with chemo as he was uncertain if there would be any benefit, so we sent the tissue to USA for the oncotype dx test. Fortunately my partner & I could afford it, $4,050, and results came back low risk (just! score of 17) and zero benefit from chemo.

This is a great test and it has been of huge benefit to me, but I feel really upset that many women who may benefit from the test cannot afford it and then have to go through chemo unnecessarily. I applaud BCNA for the submission to the Government to put this test on the PBS, and hope for its success. Is there anything I, or we as survivors, can do to help lobby for this?

6 Replies

  • sad's avatar
    sad
    Member
    11 years ago

    Thanks DarleneC, it was scary when I found out that one of the tumors had Grade3. I cannot still believe that I am in the low risk group for Distant Recurrence. I will know more about RT & HT this week. I am not sure if I am post menopause or not! (becasue of the endometrial surgery done). Good luck for everyone in this journey.

  • DarleneC's avatar
    DarleneC
    Member
    11 years ago

    Hi Mona. My medical team also recommended chemo, as that is establsihed dogma for 1 or more positive nodes; i guess they don't want to be sued for not recommending everything medically possible; but the oncologist was hesitant - which was great - he felt it was an each way bet whether chemo would be of benefit. So glad I did the oncotype test. - cheers D 

  • DarleneC's avatar
    DarleneC
    Member
    11 years ago

    Hi. The benefit of the test and the saving of not only $$ to medicare for not having to pay for chemo, but also the cost to the women in physical side effects, and also the cost to business for the absences from work, should encourage the government to list this on the PBS.

    Congratulations on the score of 14. Low risk of recurrence is such a relief. I start radiation on 16th June: only 15 treatments for a total of 40 grays: crossing my fingers that I get through that OK. Then HT; as I am post menopause the oncologist is recommending aromatase inhibitors (not sure yet which one) rather than tamoxifen. Good luck on your journey, cheers

  • sad's avatar
    sad
    Member
    11 years ago

    I had a bilateral lumpectomy and sentinel node biopsies ~6 weeks ago.

    RIght: 19mm (& 6mm DCIS) Grade 3, 7 (-) nodes. Clear margins, ER+, PR+ and HER2-

    Left: 5mm (& 7.5mm DCIS), Grade 2, 3 (-) nodes. Clear margins, ER+, PR+ and HER2-

    I decided to have Oncotype DX BC assay. After 3.5 weeks, yesterday, I received my results (Recurrence Score= 14), and I am waiting for my oncologist to interpret the report for me. From the clinical experience, the patients with RS 14, avg rate of distance recurrence was 9% when they were treated with 5 years of Tamoxifen. I guess I will forgo Chemotherapy, have only radiotherapy and Tamoxifen. 

  • sad's avatar
    sad
    Member
    11 years ago

    I had a bilateral lumpectomy and sentinel node biopsies ~6 weeks ago.

    RIght: 19mm (& 6mm DCIS) Grade 3, 7 (-) nodes. Clear margins, ER+, PR+ and HER2-

    Left: 5mm (& 7.5mm DCIS), Grade 2, 3 (-) nodes. Clear margins, ER+, PR+ and HER2-

    I decided to have Oncotype DX BC assay. After 3.5 weeks, yesterday, I received my results (Recurrence Score= 14), and I am waiting for my oncologist to interpret the report for me. From the clinical experience, the patients with RS 14, avg rate of distance recurrence was 9% when they were treated with 5 years of Tamoxifen. I guess I will forgo Chemotherapy, have only radiotherapy and Tamoxifen. 

  • mona63's avatar
    mona63
    Member
    11 years ago

    similiar results with grade 2 20mm with one lymph node er pos, pr pos and her2 neg; chemotherapy was not recommended by my oncologist; although the 3 oncologists who consulted right after breast surgery all said 'chemotherapy ' needed.  I find it interesting how there is also ground swell of 'fact' which one lymph node means you have to have chemotherapy

    pleased that some oncologists are not going on 'automatic' mode and weighing up risks and benefits.  would love to see the costs for this test brought down as it really is a barrier and if you think of the emotional/employment/ emergency health costs etc of chemotherapy then that would be in its favour.  best wishes