Forum Discussion

sydak's avatar
sydak
Member
10 years ago

Confused

As someone who support a loved one who was diagnosed with breast cancer, and as someone whose profession is not in the medical sector, but used to having things clear and methodologically explained. I'm confused to see that many test results are not explained thoroughly to the patient and conclusion to what diagnoses (and thus treatment) is generalized and presented as 'given.' this is too difficult and complicated to explain, this is the procedure you need to do, this is the risk etc., but why and how do we come to conclusion this is the course of action to take .. just take it. 

 

That's not very empowering, and intrusive IMHO. I am at the moment confused to understand if any hormone changes will have a positive or negative impact on cancer's growth and spread? The doctor mentioned that, flipping the pathology test result, but didn't not specify what is it with the result that causes him to make that decision? While reading the articles online, the results supposed to say something about receptor positive or negative, but nothing in the copy of the test result (after demanding it) say anything about those. 

 

it's like a black box.. 

6 Replies

  • sydak's avatar
    sydak
    Member
    9 years ago

    I'm in Sydney too, was checking with a specialist located just next to Auburn hospital and I think the test was done at Douglass Hanly Moir pathology in Strathfield.

    I'm not sure if they sent off the biopsy sample elsewhere or not. 

  • jd48's avatar
    jd48
    Member
    10 years ago

    Great

    Also just realised your results did not have the receptor portion. I am not sure where you are from as I am in Sydney and in my case my results came in 2 lots as were done in 2 different hospital labs. 

    1st lot had to do with the actual sample and was 3 pages explaining the process taken.

    2nd lot from a different hospital was about the receptors.

    Maybe whereever you are from they similarly send the sample.off for receptor study elsewhere and you were not given that portion?

    Again, I was never given my results post surgery but called the breast care subsequently explained I wanted them for my records and wanter my GP to have a copy ad she organised a copy to be mailed to me.

    So I would definitely try to pin your nurse down as apart from helping you understand what is going on now through this whole process as doctors change and treatment progressess she will be one static point of contact.

    I may not always like what she has to say (ie information she passes on) but I love the lady as she makes sense and has always acted to help me and has always been able to help me work out my options and create a plan of action I am content with

    Jel.

  • sydak's avatar
    sydak
    Member
    10 years ago

    Hi Jel, i'm taking note on that, thanks will ask the relevant nurse then. thank you.

  • sydak's avatar
    sydak
    Member
    10 years ago

    Hi Brenda, thanks for the PDF, I think it's very useful read. I'm reading through it now.

  • jd48's avatar
    jd48
    Member
    10 years ago

    I hear you... i had the exact same experience and was completely confused even after my.surgery...

    What helped me was meeting with the breast care nurse in her office where upon my saying I was confused she opened my results and then explaoned each component of it as well as typical treatmemt for such diagnosis and she patiently explained why each of the components would be reccomended.

    I can honestly say that in this whole mess the breast care nurse I deal with has been one shining light in what seems to be neberending darkness and strongly suggest you get in touch with yours if your hospital has one. If not conract the Breast screen for tour area and ask them how youbcan be put in touch with the breast care nurse.

    Apart from helping me understand the information she has been my best advocate in this sorry mess acting as a go between when I needed more information pre chemo as she would pin doctors for down for me pass on information to them or get the information for me that I was needing.

    Please try to get in touch with yours and explain your concerns

    Jel.