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Oncotype Test

LBHALL
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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

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    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

  • Offline in reply to Marlyn

    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

  • Offline in reply to LBHALL

    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... ️

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    Hi

    I was diagnosed end of June with stage 2 DCIS. ER+ HER2 negative. I had lumpectomy end of Aug. The took 4.5cm including the margins which were sufficient, i had 1 lymph node removed which was clear.

    My score was 21 - chemo had never really discussed until i met oncologist last week who has given me the option to have EC chemo, he said its my choice as im bordeline low-medium and cant sway me either way im really upset as i dont want chemo, however if something came back then i dont think i could forgive myself. The only reason i dont want chemo is that i dont want to lose my hair.

    Best of luck on your journey x

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    Hello LBHall,

    Yes that 'all over the place' feeling is so understandable! You have had your life turned upside down and inside out within the short space of 8 weeks. 

    I was diagnosed with lobular cancer grade 2 in October 2019. I had a breast reduction to remove tumour and 15 sessions of radiotherapy. 
    However initially it was thought to be a very small tumour but they found it was bigger than they thought when I was operated on. They got clear margins but it was a close run thing. I had no lymph involvement. 
    Given the tumour was bigger than initially  estimated the surgeon said an ONCO test (to establish whether or not chemo would be appropriate in my case) would be helpful. They sent a slither of my breast tissue to Boston USA to have this test done. UK Hospitals didn't do them at the time. Anyway 3 weeks later it came back. I had a score of 9 so chemo was not going to be helpful to me. Well I guess it meant the chemo would harm me more than help me. I understand that this applies to any score under 25. At least that's what I was told. 
     

    I was relieved about no chemo of course but had a high score been the outcome I would  have (rather reluctantly) gone for the chemo. I guess just because it would have felt safer to do so. However this is about YOU and it's a deeply personal decision. We all have to go the way we want to. Listen to the doctors and listen to yourself. We all know what we truly want (and don't want) and it's just a matter of giving yourself the time to consider your options. It's a big decision and I think it's important you make it yourself having heard all the facts. I don't want to sound harsh because I am sure your husband wants the very best for you but it IS about YOU. Mostly my husband agreed with my treatment plan but I wouldn't really have taken too much notice of his view had we differed. It's my health and my life. I saw it very clearly that way and I still do. 
     

    I think it's really good the onco test result will be known and a chemo session available should you need it/decide to go with it. Good planning by the oncologist!! It doesn't mean you have to have it but so good you wouldn't have another wait for chemo in case you do. Go easy. 
     

    Wishing you well of course.
    You will get there. 
    Kebb x 
     

     

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