MBC found 1st May 2023 and as of 25/12/2023 .... no pet scan.
Its seems the local hospital has no protocols in place to deal with a patient with claustrophobia. They have continually delayed giving me the scan and I will not consider any treatment until I am fully aware of the spread of the mets. From day one I have had nothing but drama and stress with the hospital, getting a call the next day after CT telling me I had to go to a private clinic of their choosing, have a 3D mammogram and biopsy under US and when speaking to the clinic they said the bill would be in the thousands. I refused, contacted Qld Cancer Council, Breast Cancer Foundation and a local MP in opposition. The next afternoon I got a call from the hospital nurse telling there had been a mix up and of course I did not have to pay. My new GP warned me of a backlash as this hospital is known for it. They were right. After the biopsy ( clinic refused to do the lymph node biopsy as they were not given any CT info) I had a meeting 3 weeks later with a surgeon who was just awful. He dehumanised me and never at all asked what I wanted or how I was feeling. He told me the chemo would ruin my heart and make me feel like death, when I said that I needed the full picture with a pet scan before making decisions he replied that he hadn't decided that I would get one. When he had me strip my top and bra off and examine me in a position that the public could see me I totally shut down and switched off. I decided then and there that I would not go back. It took my GP months to talk me into going back and they arranged that I would see the hospital oncologist that they had spoken to. I phoned and made the appointment to see him. When the day came, I arrived at Oncology only to be told he was not there and never intended to be. Then the front desk started laughing after I got visibly upset. I left and went home. When hubby came home I was finishing my second bottle of wine. My GP perservered and made an appointment again and this time they told the staff that they would be attending. They rang my GP back and said he had a family emergency and would be away for weeks. My GP told them to make an appointment foor his return. So weeks later we go to see the oncologist. I see a junior doctor who was nice and he agreed that a pet scan should be the first step. I was relieved until the Oncologist came in and said sedation would not be given as it is an easy procedure. I explained that with the chest CT of 3 mins I was given intravenous diazepan which lasted 2 mins 45 seconds before I had a panic attack. I got a hearty "oh, you will be okay"with a pat on the hand. He then said they would organise a shot of Denosumab next visit. I asked what it was and told I didn't need to worry about it. His junior gave me a prescription for Letrozole. I was told the pet scan would happen within 2 weeks. 3 weeks later I got a call from the woman who would be doing the scan. She was surprised when I asked if she was told about my claustrophobia. She said as far as she was concerned the scan would not be given until twilight sedation was offered. Since then nothing at all. On the 20th Dec I went for a follow up appointment on my own and a different doctor appeared and as I was extracting myself from the uncomfortable waiting room chair the doctor rolled her eyes and said " I don't have all day". I left. If she had been decent I would t of told her that I stopped taking Letrozole on day 15 as the side effects were just awful.
