My score after surgery has come back boderline. He didnt give me the exact score but nurse said something about being one under. I am now waiting appointmemt from another hospital to talk to them.
I had 2 x grade 1 tumors and 2 postive lymph nodes.
I am beyond scared of having to have chemo.
I am her2negative and hormone respetive will they give me other options
Hi sammy75,
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Hi @sammy75 was that the PREDICT tool used or oncotype test?
Mine was in the “grey area” on the system they use so the oncologist has agreed for it to be sent off for oncotype testing today! Has that been mentioned to you at all?
Sending love to you it’s not nice having to wait to find out!! Xx
Hi Katie
Thank you for your reply. To be honest the consultant really dodnt say alot. It was the bad snow day and only him.
He said the cancer had gone and boderline and that I was now being referred to an oncologist at the Queen Elizabeth and should hear in 4 to 6 weeks. Already had a bone density appointment come through.
Maybe i need to ask this at the hodpital when i get appointment
Very frustrating and upsetting for you - it can be hard to take in as well . Maybe you could contact your BCN and ask her to clarify what they meant by saying it was one under what scoring system they were using and what the actual score was and If it was a number or a percentage. If you can find this out then the Nurses on the Breast Cancer Now helpline might be able to make things a bit clearer - even without this information they may be able to help .
@katie91 is quite right in that they do use the Predict scoring tool when assessing the benefit of therapies for patients with ER and or PR positive breast cancers but there there are others and they might use more than one. It’s possible to request a copy of your Pathology report being up Predict on Google and run the numbers yourself from the report but honestly it’s better if you have an appropriately trained medical professional to go through it with you .
I’m sure the Oncologist will be able to clear this up when you see them but having to wait again for answers is always difficult. You seem to have an idea of what to ask so write down your questions and any questions that you think of as a result of writing those down . Xx
Hi Joanne
Thank you for that. I rang my BCN today and she said she wasnt clinical and couldnt give me that information and that when I get to the new hospital and see the ongologist they will be able to tell me more.
Trying to stay away from google but have a real fear of chemo after watching my father with brain cancer
Thank you for reaching out xx
Oh I’m so sorry about your Dad - I lost my Mum a few months before I was diagnosed and then Dad just over two years later . Neither had cancer but it was beyond awful watching them waste away and become barely recognisable from the strong beautiful people I had known all my life.
Google isn’t your friend right now - save it until you have more information . I can understand why your BCN feels she can’t really go through stuff with you but if she has made a comment for e.g. that you are “ one under “ so borderline then I would have thought that as she said that then she should be able to say how they have come to that conclusion ( percent / scoring system ) . I do still feel that a call to the helpline might be useful .
I’m sorry that you are back playing the waiting game - take a day at a time and try to make the most of any nice things that comes your way in the meantime however small . Xx
That seems really unfair of them to just give you a snippet of info and then make you wait for 4-6 weeks! Do you have an email address or contact number for the surgeon to ask for some clarity? Pr could you ring and try and speak to a different BCN? Theres 1 BCN at my hospital that just won’t engage about results and another that will happily give them put and says “they’re my results”, she does explain things may change once results get to MDT or the oncologist but she will always give them to me. Maybe thats why they won’t give them to you as the score needs a discussion with the oncologist but I do still think its unfair to refuse more info!
Hope youre ok xx
Thank you
Ive woke up this morning very nervous. Gonna lie and chill on sofa i think x
I just feel because I have been so ill and anxious through all this that the nurses are just frustrated with me
Hello sammy75
Thanks for you post.
It’s understandable you want more information about what your borderline score may mean in terms of treatment offered.
You mention you feel beyond scared about the possibility of having chemotherapy. Treatment options for breast cancer are agreed by your multidisciplinary team, and can vary. This will depend on different factors including, the type, size and grade and stage of someone’s breast cancer. A patient’s wishes should also always be considered.
You mention a borderline score and we’re not sure if this was in relation to a test called an Oncotype test as @katie91 said. The Oncotype DX test can help your treatment team decide whether you would benefit from having chemotherapy. This may be given to reduce the risk of a cancer returning or spreading. The Predict tool is an online tool that helps patients and doctors to see how different treatments for primary breast cancer might improve survival rates after surgery, such as hormone therapy.
Treatment options are discussed in line with the most up to date evidence available at the time and to enable you to make an informed decision that you feel is right for you. This includes discussing the possible benefits, such as the percentage benefit of a treatment, and the risks of different treatments.
As @JoanneN and @katie91 says, it is very difficult waiting for appointments and not having all the information. While you wait, you are welcome call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
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Teresa
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