Follow up scans

Hi 

T2N1M0 tonsil cancer HPV16+

PET/CT scan 4 months after chemoradio finished ....F2F reviews every 3 months for 2 years....then F2F reviews every 6 months for the next 3 years....no word of scans.

Peter

Woodz said:

this seems much less thorough than most of you on the forum and I’ve found it very unsettling. For me there’s no discussion of having eg a PET scan. What are your experiences?

Hi

I think PET is restricted to those of us who have had RT and then only to check treatment has worked

I had an MRI 12 weeks after treatment and a PET at 16. No more are planned

Thanks Dani and Peter. So perhaps I’ve got the wrong end of the stick. I’m finding it difficult as my brother died of throat cancer a year before I was diagnosed- his recurred quickly and aggressively post surgery. I keep telling myself it’s not the same but it’s hard to put those thoughts to the back of my mind. Xx

Not an expert, but it feels like a reasonable plan that your consultant has put in place especially with good margins - there seems to be some checks and balances.  I did have PET scans post surgery, but my particular case history is relatively unique hence the clinical scrutiny.  It seems like your consultant is confident in the surgery and is comfortable with checking all is OK via MRI scans as you go along.  I imagine they are also confident that you will raise any concerns with your CNS in between appointments - don't be afraid to do this if you are worried. 

Subsequent to CRT (1 year ago) I had a PET and no more scans are planned.  In the first year I've been seen at varying time frames of up to 3 months gap, mainly because I was away and they were confident that I was OK and would raise any issues if needed.

To settle your mind give your CNS a call to discuss.  

Thanks. I don’t think I understood what ‘being monitored’ would mean and am probably being over anxious because of everything else.

Certainly made me feel better posting here and getting some reassurances.  

Woodz said:

Thanks. I don’t think I understood what ‘being monitored’

Hiw often are you having ENT appointments? 

Hi 

pet ct scan  after treatment finished January 2019  to check the treatment had worked no further scans not even when I was signed off at 5 years. I was seen every 6 weeks for first 6= months then every 3 months for next 2  years then every 6 months For last 2 years. 

Hazel. 

Every 3 months so far - but I think it will switch to 6 months. 

Doubtless you’ll get a scope every time. They are keeping an eye on you so try not to worry. 

Hi I had stage 1 tongue cancer no node spread. My oncologist and max fax both said I didn't need any scans after RT finished. I asked why and they said they got the cancer with the operation and the RT was belt and braces. I asked again in a later apt and my max fax consultant said other hospitals wouldn't even have offered RT but they threw the kitchen skin at mine to be sure. I had an MRI of my lungs as I had incidental nodes at first scan which could have been there for years and in repeat MRI scan were same size so will get yearly check with MRI. Others who had RT same time as me got pet scan or MRI but I didn't. Both the oncologist and max fax seemed pretty confident I didn't need one as cancer was operated on . I hope they are right. I get monthly apts since sept with max fax and get a good check up. At one point I remember my oncologist saying he thinks my cancer was the earliest he's ever seen. Hope so .