Hi Julieann,
I have been following your story and I hope that you may have some answers by now. It is so sad, that when you opt out of chemo, you are many times directed back to your family doctor. This means that any follow up such as scans, draining off fluid from the lungs etc. are not done through the specialized cancer hospitals and oncologists (there service is much faster). We experienced this first hand here in Canada, when follow up medical services by the Cross Cancer Institute were refused after 2.5 liters of fluid was drained off Hans his lungs ( cancer had metastasized to the lungs)and Hans told the oncologist on duty that chemo was not an option.
It seems that this is not uncommon, I have heard this from different other people as well. It is really distressing, that the care of oncologists and the cancer institute is not available for those patients, just when they need it most in the last stages of this horrible disease.
After the refusal of the Institute, Hans talked to his own oncologist at the Institute, who was on holidays at the time of the refusal, and asked him to make a scan, because of the lung involvement and because he wanted to know how far the cancer had spread. Hans was able to persuade him ...his oncologist was more compassionate willing to make a scan, but may have broken the guidelines.
I hope you or one of your siblings is able to persuade the oncologist to make the scans.
Hugs,
Renée