Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Post treatment PET scan

KMJ19
Posted by

Hi all

So I am 17 weeks post chemoradiation for tonsil cancer. 

Had my PET scan on Monday. The technician said the results would be with my team this week. 

I know they have their MDT on a Monday morning. My next monthly check up isn't until 16th Dec. 

Has anyone else been in this position? Do i assume after Monday no news is good news as I would hope they would see me sooner if it wasn't good news? 

I've been extremely positive thus far but am finding this bit really difficult and I'm very emotional. 

Thanks 

Kelly

Beesuit
Posted by

My appointments at the time were every six weeks. My PET/CT was supposed to be booked between two but I got an appointment in one week, with results to the consultant three days later.  So..... I had to wait five weeks even though MDT meetings were every week. Pants!

KMJ19
Posted by

I'm quite lucky then as wont be waiting that long! 

My rational brain tells me all will be well but that tiny negative nugget creeps in. 

Wishing you well in your recovery 

Kelly xx

chris2012
Posted by

Hi Kelly, well done so far, im pleased you have had a scan as i think it gives peace of mind although on the downside the waiting does cause us to worry. I would say if you don't hear anything after a week then it should be good news but you can always phone up for the results if you are worried. Stay positive, all the best .

                                                                                                 Chris x

Its sometimes not easy but its worth it !                Click here to find out more

Hellebore1
Posted by

Hi Kelly. I’m so sorry you are in this position it is truly very tough. Once that scan is done, you just want to know the result and get on with your life. What might happen, it does in my unit, is that the Head & Nurse rings a patient up if the scan is clear - they offered me this, but I declined because no phone call would then mean.........a horrible wait and impending sense of doom. So I waited it out and heard from the Oncologist in person, at least she would have had a plan if it was bad news.

It’s not surprising that you feel emotional - I certainly did. Ask friends and family to call in, take you out, just keep doing stuff. The dark moments and angst still come, but there is less time. And don’t be afraid to ask your GP for a sleeping tablet  - its a temporary thing, and I needed it more at your stage than I did after diagnosis.

I was told by a counsellor not to dwell on the possible “bad news” scenario. There is a much higher chance that the  news will be good rather than bad - so you must spend more time dwelling on the possible GOOD news. That’s more difficult when you’re alone and thinking......but try it.

Wishing you all the best in the coming days

Hilary

KMJ19
Posted by

Hi Chris

Once again thank you for your words of wisdom! 

Much, much appreciated. 

Kindest regards

Kelly x 

KMJ19
Posted by

Hi Hilary

Thank you so much for your post - I'm feeling better/more positive already. 

I'm seeing my counsellor next week so will discuss further with her. 

I really appreciate you taking the time to reply. 

Kindest regards

Kelly xx

RadioactiveRaz
Posted by

Hi Kelly

brill new season youve  made it through treatment and recovery I wanted 14 days for my scan results,they have to be reviewed by yiur m d t team and 2 consultant s have to verify them ,somjust go with the flow remember how far youve  come , if yiu are worrying see if yiur appointment can be briughtbforward a week if resukts are ready if course. I know they don’t give info out over phone m just find a good box set settle down and try and keep occupied. Like I said yiuve dine the hard but .

Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

KMJ19
Posted by

Hi lovely

Thanks Hazel! 

I've got a busy couple of weeks so I shouldn't have too much time to dwell. 

I had no idea how hard post-treatment was - it's been a real learning curve.  

I hope you are keeping well

Kindest regards

Kelly xxx

RadioactiveRaz
Posted by

Hi Kelly

thank you , I am now 15 month post radiotherapy am doing well still have saliva issues ,but the saliva seem so to be improving slowly. Watch our for thrush many of us seem to get it just when you think things are looking up.Took me months to get rid of it finally .

Keep busy ,at least yiu can get some Christmas shopping done ,good luck and look forward to you sharing your results 

Hazel x

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

KMJ19
Posted by

Hi Hazel

Thanks for the heads up. 

I'm suffering with reflux. I was panicking as my throat was sore but eased up after I had taken omeprazole.  

Will let you know how I get on

Kelly xx

RadioactiveRaz
Posted by

Hi Kelly

Yeo sounds aboutbright I was also put in omaprazole for same reason , I am on 20 mg a day but have started reducing them tthis weekmso dingers x I don’t really need them any longer. 

But if you think how much of a battering our throats have it’s no wonder that something has to give ,I never had acid reflux before.

keep on battling through

keep in touch

Hazel x 

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer