So , today I went back to ENT to get my final biopsy results . Last visit, one week ago , I was told my diagnosis was Cancer SCC to soft palate but they were checking to see if deeper tissue was affected . So they tell me to just turn up next Tuesday . I didnt feel too comfortable just turning up when I know how busy ENT is so chased a CNS nurse on the absurdity of just tipping up with no timing . CNS nurse emailed me and said okay , you are booked now at 10am ( i got this timing yesterday , the day before) . So , we arrive today at 9:45 am at 11:30 we are still waiting and watch about 15 patients come and go , many arriving far later than us . My chap goes to complain and a nurse appears and says you are next , five more patients still go in ahead of us .. at 12 noon we get called in , 2hrs 15 minutes waiting
After all this , I get the news that my biopsy result is still not back but they are treating it (for now) as the most common Squamous Cell of the soft palate . Consultant asks how I am , I say not good , my biopsy wound is still open , she takes a look and “yikes that looks sore” Tell her I have been like this since 2 days after biopsy - I have eaten properly for weeks and my anxiety is off scale
I tell the consultant that I am frustrated that all plans mentioned last week have not happened , no PET scan date , no dental check , no mask date etc since my visit last week . CNS nurse (who is lovely) leaves and gets me a dental check booked straight after and promises she will chase on the PET scan for me. (Time will tell)
After dental check , it turns out I have two teeth that need removal before therapy ( I am told this is getting off lightly) extractions will be done tomorrow ( oh joy) but one item off the check list.
For now I am waiting on PET scan date , mask fitting , blood tests needed 3 days before PEG surgery and most importantly my final darn Biopsy results . They told me to come in to ENT next Tues for result but again , no set time at the moment so I suggest to them , can you not just call me and if things are worse then provisionally book me a slot to discuss changes , which would be surgery to soft palate (not ideal but little options if deep tissue affected)
So far , I have attended ENT twice post biopsy surgery each a week apart for my biopsy result and each time they are not back .. this scares me ! I know they have confirmed Cancer but my treatment cogs are jammed and the method of operation seems chaotic leaving me in total semi limbo .
My biopsy surgery will be 4 weeks ago come Monday 
Tired, deflated and confidence plummeting
Jo
Hi Jo
I can understand why you are getting frustrated. It all seems a little disjointed doesn't it. Have they told you that further surgery depends on the results of the in depth biopsy?
The planing CT you get when you have your mask made will delineate the treatment area so you shouldn't worry about anything being missed. The PET/CT is to check for metastasis and see how many, if any, lymph nodes are affected
I didn't have surgery as I had no nodal spread but my tongue tumour was likely to big to surgically remove and there was no TORS available, but my wait between biopsy results and first RT was 8 weeks and I'm still here and well.
Keep at your CNS every few days and hang on in there
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
teeth extraction done.. a few stitches and back on soup x but it wasn't as bad as I thought it would be .
Glad it went well. I had a wisdom tooth out after RT in hospital and they are really good at whipping them out fairly painlessly.
Now rest up and spoil yourself.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
