Don't agree with oncologist decision

I have recently been diagnosed with a malignant neuroendocrine tumour (or tumours) of the appendix following appendectomy. I am awaiting appointments for an MRI and CT and will then meet with the oncologist. I have however been informed by the cancer nurses, following an oncology meeting, that I won't require further surgery to take further biopsies from other places to ensure that it hasn't spread, as was suggested that I may well need at my initial diagnosis appointment with the consultant. This was due, in part, to the cancer being found in more than one area of my appendix and close to the point that it was cut and removed. This is the decision of the oncologist who I am yet to meet. I will meet the oncologist once I've had the MRI. I fully appreciate that I've yet to meet him and that I'm not the expert but surely the only definitive way of knowing, categorically, that is has not spread is by taking further biopsies. Anything less than that is surely open to human error. It's a very low chance and I understand that but it was also very unlikely that I had that cancer I do (it affects 1 in a million people) but I do. I'm not comfortable with the decision not to take further biopsies and know that I will just stress and worry that they've missed something and it may have spread. Is there any point in trying to fight this decision or is it final? I will of course make my concerns known when I meet with the oncologist. Thank you. 

  • Hi Kathryn,

    I'm not any sort of clinician, just another patient, but in my case the scans showed where the secondary cancers were. I didn't particularly want biopsies taken unnecessarily as I knew the chemo would attack cancer cells wherever they were located. It might have been different if a more targetted treatment such as radiotherapy was an option. 

    All I can suggest is that you write down all your questions and discuss them with the oncologist when you first meet. Remember that no decisions can be made without your informed consent and agreement. 

    You are at one of the scariest stages at the moment, once your treatment plan is agreed things will move into some sort of routine.

    Best wishes

    Dave

  • hi, im not a dr either but  can only tell you from our experience that the mri and a sintigram of your whole body will pick up metastasen if they are big enough to find, microcells cannot be found this way,and  whatever is there will be wiped out by chemotherapy (should you need it) so there is no need to take further biopsies, this is why all decisions about treatments are made after all those tests are done...all the best