I have a tumour in my nasal cavity, had two lots of surgery with removal of the right side of my jaw and a maxillectomy. Unable for all of the tumour to be removed I was referred to another hospital for their opinion of treatment.
I had a pet scan and showed activity, injections were given for 3 months to see if this would shrink it, following another pet scan this showed that it did not work and the tumour had continued to grow.
In March this year I then had 5 weeks of radiotherapy, the 3 month post pet scan showed that the FDG levels had dropped to half of what they were before having the radiotherapy, I was told that another scan would be done in another 3 months after that.
I felt very hopeful that the radiotherapy was working on the tumour and things were starting to look up after an already long journey.
But I have just had the results of the 6 month post radiotherapy pet scan and told that the FDG levels have raised, this left me feeling very distraught and finding it very hard to process this.I briefly had a conversation with my oncologist to be told there has to be 2 scans to show that it has not worked before considering the next step to take.
Surgery was not done to remove the small amount left as it was difficult to get to that’s why other options were explored but I feel that after 22 months of this I am now in a worse position and not having much faith that things will improve any time soon.
Hi Dancey
So sorry you’ve had news like this.
I had a post treatment PET/CT hotspot where my cancer was.
Thankfully my team fast tracked me for a biopsy a week later so I didn’t have to wait the same three months that’s been suggested for you. Some trusts seem to work with the two scans which makes the waiting awful. I really feel for you. I recall how devastated I felt when I was told that more investigation was necessary.
Having re read your post you HAVE had two scans so I’m not sure why yet another has been suggested.
I would suggest you contact your CNS and get them to find out exactly what’s happening and why.
My reaction was inflammation, not cancer so I’m crossing my fingers yours is similar.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I have been told that there has to be two scans showing that the radiotherapy hasn’t worked hence another 3 month wait as the first post scan I had showed my FDG levels had reduced.
Ah, I get you. Two increasing scans
Or hopefully one increasing then reducing.
Gawd! Messing you about is an understatement. Thus sort if stuff should be explained to you so you don’t leave the consult till you understand. The worry it causes!
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
