I was diagnosed with Adenocarcinoma and operated on in early 2022. The pathology results then linked this to breast cancer. Despite repeated tests, to date (June2025) there is still no link to breast cancer. Eventually after another situation being identified in my mouth, in January 2024 I had a Parotidectomy and 2 tumours removed. Eventually after months of further scans and yet another tumour starting in my cheek, my was referred to Oncology after me insisting that someone other thaw Max-Fac surgeon, take charge of my case. I’m was referred to a Cancer of Unknown Primary (CUP) oncologist. 18 weeks of chemotherapy ended in early February 2025. However soon after, 2 further tumours were identified in my cheek area, near the bottom jawline this time. I was then passed onto a Head & Neck oncologist who decided Radiotherapy was the best option. 10 days of radiotherapy (ending early April 2025) left me with an incredibly painful “burnt” mouth which took about 3 weeks to heal. I am currently awaiting fresh PET scans (2 spots in the vertebrae were also picked up). There is huge frustration at the length of time scan reporting is taking and I am frustrated that the only time I appear to have any urgency applied is when I complain to the hospital. I was told in September 2024 that the prognosis is 2 - 2.5 years, so I hope anyone reading this can understand my frustration at this system in the NHS. Interestingly I have also been told mine is a rare case and yet there does not appear to be any effort being made to learn from it and perhaps be more proactive in the future!
