I was diagnosed in July with her triple positive cancer. I am still waiting for CT scan of the head results.
I found the whole process very messy and confusing. For example:
- the cancer was big on the mammogram and in the ultrasound. why don't do biopsy of sentinel node at the same time.
- I was referred to the oncologist 40 days later by the surgeon. I was not told clearly I wouldn't be operated without chemo first though.
- the surgeon keeps booking appointments to tell me the same all the time, that they want masectomy even if the tumour is reduced in the next year. We don't even know if the chemo will work
- I was booked straight away all the chemotherapy even if it was not results of CT scan or heart check.
- the tests were very spread, like one week MRI breast. After MRI breast you qualified for CT scan chest. To get checked the whole body, I had to beg and threaten to go private. Why not to do all the tests in one or two weeks? Why not to start chemo with the whole information?
- they decide treatments without results or with partial tests. You carry on waiting for results all the time living in anxiety.
- the surgeon and the oncologist don't email results to each other. They keep calling from everywhere: the GP cancer support, the surgeon nurse... They always finish the conversation I will let the doctor know. You don't know what it is told to the doctor. After the doctor talks to you and says the same that he/she has a board of doctors. They make you wait without shame.
- it looks to me that they don't want to discover any metastasis, like they want to fix your cancer one by one.
I am very uneducated and not very smart either. It looks to me a whole waste of time and money. All the hours paid to this people to talk rubbish is the same cost as a petscan that will stay in your records for life. These people talk all this rubbish and send you a small report by email that you just don't understand.
Sorry for moaning. So how do you manage these situations? What advice could you give me? If the cancer becomes metastatic, do you just keep going to all these appointments and jumping hulahops? Should I lower my expectations as it is free? Is this my personal experience or does it happens to you as well?
Any advice and constructive feedback welcome.
