Biotheranostics

Options
Anonymous
Anonymous Member Posts: 1,376
Biotheranostics

Comments

  • rickysgirl
    rickysgirl Member Posts: 149
    edited July 2017

    Hello all. Has anyone had this Biotheranostics Breast Cancer Index test? I'm having a few issues I can't seem to get any straight answers to, regarding another 5 years on Tamoxifen. I was told that my chemo was "preventative", on the off chance there was a rogue cell running around somewhere, like in the bone. Cut to 5 years later, and 5 years on Tamoxifen, and I have been told by this Biothernostics organization that I am at high risk, and would benefit from another 5 years. When I asked my onc about this benefit, she said it was in case there was a rogue cell running around somewhere (where have I heard this before?). So the test is done with some of the matter from the biopsy. My biopsy is 5 years old. It was, of course, taken before chemo and this course of Tamoxifen. It seems to me that would alter the results, but, of course, it's not like you can take another biopsy to find out. I was told that if I DON'T take the Tamoxifen anothe5 years, and IF a rogue cell comes back, then it would come back as mets and there's nothing that can be done about that. Can someone please help me understand this? I was going to call Biothernostics, but they will have an answer for everything. Their own website states that they have NOT been cleared or approved by the FDA. How important is this? HELP ! Thanking you all in advance.

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2017

    Hi ricksgirl!

    Until you get responses from other members, here's what we have about Breast Cancer Index Test in our main site.

    Hope this helps!

    The Mods

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2017
    Hi Rickysgirl, I will tell you my experience with BCI to see if it helps, although I am not at all certain if any of my thoughts are accurate. I am hoping Barredowl or voraciousreader have some insight. I had a low oncotype (12) and was ecstatic. No chemo or radiation, even though I had micromets in one node. Got 3 opinions on radiation, didn't question the chemo. I was just coming out of anxiety and depression from being misdiagnosed (see former posts) when my onco said I have those results you asked for. I don't remember asking for BCI, but must have said something about reading the studies on the benefits of 10 years on antihormonals. So when I saw high risk of recurrence on BCI I went right back down the rabbit hole. I did contact the company and what I gleaned from the response (they were quite nice, btw) is that oncotype is more for the first 5 years and BCI is for 5-10 years. Anyone who knows differently, feel free to correct me, but that is what I have figured out so far. I am planning on taking the drugs for as long as my bones and joints can take it. I saw my twin sister pass away from MBC at 45, so I will do whatever it takes to avoid a recurrence.
  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2017

    There are two components of the BCI test that both need to be considered when determining what to do with the information provided by the test results. BCI provides a prognostic and predictive result. The BCI test is indeed to determine whether to continue anti-hormonal therapy beyond 5 years. The prognostic aspect is your risk of recurrence after 5 years of anti-hormonal therapy, based on an assay from your original tumor material. The predictive aspect is whether you will derive benefit from continuing anti-hormonal - and this is an important consideration because if you are one of the majority of patients, about 95%, who are unlikely to benefit, it is important to recognize that continuing may do more harm than good due to side effects. I think using the BCI result most effectively requires a combination of personal risk tolerance, your individual clinical characteristics (nodal status, tumor size, grade, Her2 status, etc.), your side effects to date, and the potential for deleterious effects from continued anti-hormonals.

    For purposes of full disclosure - my BCI result was high risk of recurrence, but low benefit from anti-hormonals, this combination represents about 10% of alltest results. My oncologist has asked me to continue as long I can, I am in year 6, because low benefit is not necessarily zero benefit. I was osteopenic prior to diagnosis and I do receive Prolia.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2017

    Thanks, SpecialK, that is interesting about your results. Mine was high for both which is probably because I was 100% ER+. (Maybe?). I will be getting my 2nd Dexa scan in December. 1st one showed slight osteopenia. Hopefully more people will share their BCI results. I wish I had been in that 95% but also am glad that I can take something that will potentially ward off recurrence.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2017

    peregrine - my ER was 96%, I don't think the percentage of hormonal receptors is necessarily linked to whether the drugs will provide recurrence prevention beyond five years. This test is an assay - looking at a specific set of genes that determines the risk and reward. I had a measurable loss of bone density after chemo and the first six months of letrozole. I had an accurate baseline with a DEXA same day as mammo/US that led to diagnosis. Prolia has restored my BMD to normal

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2017

    Thanks, I will probably need Prolia at some point, as well. Good to hear that it restores bone density!

  • rickysgirl
    rickysgirl Member Posts: 149
    edited July 2017

    Thank you. I'm going to go pick up all my initials pathology results, as it seems I have lost mine (on purpose, maybe?), so I'll refresh that info. Also, I look at everything ya'll have been through, and throughout my chemo and everything else, I was never once sent for any additional testing. No CT's, no PETs, no nothing. I don't even know what a DEXA is. I know from previously working in a radiology department, that I registered many a people with different kinds of cancers and they were all coming in for 3 or 6 month follow-ups with these tests. The only thing I had to do was an ECHO before each chemo. Is it odd that I never was asked to do any of these other things? My original dx was HER2+, no lymph nodes affected. I had a uni mastectomy, chemo, and now Tamoxifen, and that's it.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2017

    No, it is not unusual that you did not have further testing if you were stage 1 or 2. Many oncologists do not order scans any more, unless you present with symptoms. The only reason I had a Dexa scan (to check bone density) is because I started an AI which can contribute to osteoporosis. Tamoxifen is supposed to actually help your bones so you don't need a Dexa with it. Was Herceptin part of your chemo?

  • rickysgirl
    rickysgirl Member Posts: 149
    edited July 2017

    Yes, Taxotere, Carboplatin and Herceptin. I really didn't have any trouble with anything, until I started the Tamoxifen. I have unbelievable leg and foot cramps, hand cramps, my fingernails break at the brush of a feather, all the way down till they bleed (when I can actually grow them out, that is). My skin is soooo dry that nothing seems to help it. And of course, very thin hair. My onc said these are all Tamoxifen related. There is also another side effect that is just too personal to publish, but I'm sure you know what it is ! It's something my onc said could be aided by going to a gyno and having testosterone pellets placed "up there". I really can't think of anything worse. My hands look all wrinkly and dry all the time. I am hot ALL THE TIME. Even if it's 30 degrees outside and I have the heat on to keep the house warm, I sleep with 2 fans blowing on me. This is all why I was so hoping to get to come off it. I know it all sounds so petty, but it's gone on sooooo long !

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2017

    Yes, it sounds like you have your fair share of side effects. The only one I may be able to help you with is the leg cramps. Magnesium really helped me with those. I take a teaspoon of Natural Calm in my tea every morning and no longer have cramps. Helps with depression and regularity, as well.

  • rickysgirl
    rickysgirl Member Posts: 149
    edited July 2017

    Thanks, I'll try that. Besides, a nice cup of tea I should be having, anyway. Unfortunately, I had to go on anti-depressants BEFORE this event was even in the picture, so..........


Categories