Oncotype Test

WARNING VERY LONG POST


Hi everyone, 

I am new on here and I'm just all over the places, I feel like I did when waiting for my original diagnosis results. 
 

I received a diagnosis of grade 2 invasive lobular bc on 20th August and it’s been a whirlwind ever since. All of the major decisions have been taken out of my control, for example, I had decided on a lumpectomy (I was originally given a choice) but when I attended an appointment with my consultant I was informed that the decision was taken out of my hands and I had to have a mastectomy due to the location and size of the tumour (they initially thought it was 4 to 4.5cm in size with no evidence of cancer in the lymph nodes).  Fast forward 6 weeks and I’ve had my mastectomy, which went very well, and I’m sitting in my consultant’s office again receiving my pathology. Turns out the tumour was in fact 6.5cm and 1 of the 3 lymph nodes removed was cancerous. I was blindsided yet again when my consultant said I would benefit from chemo (we were told I wouldn’t need chemo) due to the size, the lymph node & my age (I’m 43). I’ve had a couple of weeks to process this & I made a plan to help me through my treatment and to feel in control. 
 

I had my initial consultation with my oncologist yesterday and she advised my husband and I (my husband had been at every appointment & ‘blindside’ moment) of the Onco trial. I understand the point of the trial & it makes complete sense ‘why have chemo if you don’t have to?’ but I am so confused and leaning towards the side of chemo.  This is the first time my husband and I haven’t been on the same page during this whole process. He understands it is ultimately my decision but he has told me that whilst he will support my decision to have chemo anyway he doesn’t agree with it. I don’t have to make that decision yet but at the moment I feel very much in ‘limbo land’ like I did when I was waiting for my diagnosis. 
 

I felt very pressured at my appointment yesterday and my oncologist noticed so asked my husband to leave to make sure I was happy to go on the trial. I have agreed, reluctantly, but they’ve booked my first chemo session too so that it coincides with the results of the onco test, I don’t even know if I’m eligible yet but looking at what I’ve learned on line I will be. My oncologist also said there is a good chance that the result will come back that I’ll need chemo so this is a moot point. 
 

I have been so positive throughout this whole process that today I just feel I’ve dropped into the depths of despair. 

my question is, has anyone had experience of the Oncotype trial? Sorry for such a long post, this is the first time I’ve been able to express myself properly I think. 
xx

Parents
  • Hello,

    I can see your dilemma. Can I ask what the onco trial will exist of? 
     

    I saw chemo as the belt and braces of my treatments, anything I could throw at it to prevent reoccurrence was worth it to me. But it's a totally personal choice....I'm glad your husband will support you whatever you decide...

    let me know how it goes? Xx

Reply
  • Hello,

    I can see your dilemma. Can I ask what the onco trial will exist of? 
     

    I saw chemo as the belt and braces of my treatments, anything I could throw at it to prevent reoccurrence was worth it to me. But it's a totally personal choice....I'm glad your husband will support you whatever you decide...

    let me know how it goes? Xx

Children
  • Hi Marlyn, 

    Your approach is exactly how I feel about it. 
     

    The trial is a test that was developed in America. As I understand it the test can be done over here but it costs about £2.600 so if you're placed into a trial it's free, I think that's how it works. It turns out that my local NHS Trust just this week has agreed to allow certain criteria of women to have it done without the need for the trial (results are received quicker) and I think this relates to the increasing numbers of COVID cases. Anyway, my tumour is tested to specifically determine the likelihood of recurrence and is scored between 1-100. 1-15 is classed as low risk of recurrence so chemo is not recommended. 16-20 medium risk and still chemo is still not recommended as the risks of chemo outweigh the benefits of it. 21+ is deemed high risk & chemo is considered/recommended. From the research I've done this is all based on women with my type of cancer but with NO lymph node involvement. They are now testing women with 1-3 lymph node involvement but I've read that women with any kind of lymph node involvement are 5 times more likely to see recurrence than women with none. 
     

    There is no family history of BC or cancer in general in my family but I have received treatment for pre cancerous cells of the cervix a few years back and I'm convinced this case of BC was brought on by stress so I now believe I'm susceptible to it (I could be living in cloud cuckoo land here ) and I want everything thrown at it if I can. 
     

    I hope that all makes sense. 
     

    Laura xx

  • That all makes total sense...Now I come to think of it this was mention at the very beginning of my diagnosis but was ruled out because of cost. The onco did some tick boxes on his pc and strongly recommend chemo for me...mainly due to being HER 2 pos ...

     

    If you don't go ahead with chemo I fear you'll always be wondering.....and worrying....Don't get me wrong, I will always worry and wonder about reoccurrence but this way I KNOW I've given it my best shot... ️