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Caccal's avatar
Caccal
Member
7 years ago

Genomic Testing?

Hi, this is my first time posting. I was diagnosed 17 October and have had a nipple sparing double mastectomy (left breast had tumors) followed by auxiliary lymph node clearance 3 nodes had cancer. Chemo is set to start in December. I cry everyday. I have ordered the oncoplus test but by the sounds of it the oncologists wont pay any attention to the result and advise AC & T chemo regardless for 6mths. Has anyone got any feedback on these genomic tests and if it changed the decision to have chemo? 
  • Reading others comments @caccal made me remember more clearly what happened with me and how it might answer your question.  I was originally diagnosed with 2.5cm ILC no node involvement.  I was supposed to have a partial followed by radiotherapy.  When the path report came back, it was 4.5cm requiring a mastectomy and had spread to 3 nodes.  This changed my treatment plan to include AC-T as well.  I won't lie and say it was easy, but with the right medication, I got through it.  I think the hardest part through most of it was the extreme fatigue.  
  • It does, and does again. I can only hope that the scar tissue that forms on our hearts is tough.
  • Invaluable advice. Thank you. I am coming around to accepting chemo. This journey breaks my heart constantly. 
  • Hi there @Caccal, I'm sorry you are in this position. You will find a great deal of support and experience from this online community. There is information about the Oncotype DX tumour profiling test on the BCNA website. https://www.bcna.org.au/news/2018/06/new-research-findings-confirm-the-benefit-of-the-oncotype-dx-tumour-profiling-test/ 
    This test is designed to identify if chemotherapy will be beneficial for a specific group of people with early breast cancer. The target group have breast cancer that is hormone receptor positive, HER2 negative, and node negative.  It sounds like your circumstances are different and so the benefit to you of chemotherapy is more clear cut. I agree with @kmakm that it would be good to have an understanding of why the doctors are recommending chemotherapy in your case. If you would like to talk with an experienced cancer nurse, or get more information or support you could call the BCNA Helpline on 1800 500 258 between 9am-6pm.      

  • Hi there 
    i was diagnosed dec2016,idc ,3 tumours,totalling 2.7cm,we positive,pr positive,her negative.not in lymph nodes.it was grade one,my surgeon said he didn’t think I needed Chemo as a grade one,oncologist said have chemo,was very confused,my oncologist suggested the oncotype testing,was booked in for Chemo,the test came back low,my oncologist then said he wasn’t recommending Chemo as it was going to give me1-2 percentage benefit,he still left up to me ,I didn’t have it ,I had radiation and am taking tamoxifen for ten years,it is a hard decision as by time I got test back I had resigned myself to getting chemo.i was 40 at time. My oncologist did say some people would do it for that 1 percent,so it a personal choice too,my surgeon who is very respected,did tell me if I was his wife he would still only recommend hormonal therapy so I just trusted I’m hopefully done the right thing.
  • Hi @Caccal. I'm so sorry you're going through this. I cried non-stop (well not in front of my kids but multiple times a day) for a month. It was a horrible time. The daily tears slowed when chemo started.

    I had the EndoPredict genomic test. If my BC had been the first in my family I would have proceeded to radiotherapy after my wide local excision and re-excision. However as my sister had died from it and my mother had had it at my age, my oncologist thought that if I could afford it, I should do it.

    The test came back as, in the words of my oncologist, "clearly positive", so I changed course and had chemotherapy.

    Did your oncologist suggest you do the test? I'm not familiar with the oncoplus test. What are its parameters? I was told that these tests were used on early breast cancers. So the size of your tumour may be a sticking point, as well as the fact that you had it in your lymph nodes. But I don't really know about these things, so I reckon you should ask your oncologist. And ask them the pointed question: 'if the test comes back that there'll be no curative effect from chemotherapy should I have cancer cells spreading through my body, why are you prescribing chemo?' I'm sure there's a good reason and you sure as heck deserve to hear it!

    I don't know what you know about chemotherapy but it's not the monster it was a generation ago. It's in no parts fun, but there are excellent medications to lessen most of the side effects. Don't suffer in silence, speak to your medical team if you're in pain. You will get through, and we're all here to help you. 

    Let us know how you get on. Deep breaths @Caccal. And a very big hug, K xox
  • Hi there @Caccal.. and welcome to the group that nobody wants to join. In my case, chemo was a given as I had stage three, grade three, multifocal triple positive breast cancer with one node positive. I did ask my onco (large Sydney teaching hospital), about testing to see if chemo would make much of a difference and was told that based on the pathology reports on the biopsies so far taken, that the plan was chemo first..3 months AC followed by 12 weeks Taxol and Herceptin, with the Herceptin to continue for 11 months total. She said that there was some debate for the testing if it was stage 1 or borderline 2 and, most importantly no nodes involved. My chemo was then followed by bilateral mastectomy, sparing nothing and full axilliary clearance on the left, and sentinal nodes on the right. The pathology report on the removed breasts showed no active cancer detected anywhere, with only the dead tumour beds found. So, total zapping of any detectable cancer by the chemo. It was a very hard road to travel, I won't kid you there, but reading that pathology report whilst still bandaged up and with drains etc, made it all worth while. I'm now two years post diagnosis and No Evidence of Disease. Good luck with your ongoing treatment.Ally.
  • Thank you Sister. I appreciate the warm welcome. 3 oncologists won't entertain even looking at the results. Says a lot about it right...
  • I can't help with your question @Caccal but wanted to welcome you to this forum.  I think that the findings of this research may still be too new for many to be able to answer.  Have you discussed it with your onc?