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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 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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    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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