Disappointing PET scan result

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Just had appointment following first PET scan. Uptake showing at base of tongue and in left had side of neck (original treatment for right hand side)

I know we think we know this is a possibility but has still come as a bit of a shock. Actually managed to cry on 3 different people at the hospital

Nothing is definite yet, I know that, but sure I ordered a NED appointment. Going to be having ultrasound on neck and another TORS base of tongue strip removal / biopsy.

I don't know why, but I wasn't expecting the tongue bit. Last surgery, they had located the tumour (which had not shown up on scans) and removed it with good clearance apparently. Followed by chemoradiation so job done I thought. It's in exactly the same location though so .............. He did the usual camera up the nose and took a photo which he showed me. The 'hot' spot had loads more blood vessels than the other side of tongue which to me is not great.

I know, don't jump the gun, step by step, nothing sure yet but we all know what it's like, maybe worse now you know what it can be!

Anyway, off in a min to see mother and sister for lunch. Have already pre warned sister, mother is coming to my house first so I can tell her. Had not even told them about the appointment as was a bit worried. Hate that I can't just say it's all fine.

Ps. Has anyone seen my dental splints?!?!

RadioactiveRaz over 3 years ago

Hi Julie Please don’t get too down hot spots can still occur well after treatment There’s a few in here that’s had hot spots show and have gone on to have biopsies and all that stress yourself going through. Keep popping on here as when you need to rant or just need a friendly ear.

Hugs Hazel

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

juliesss over 3 years ago in reply to RadioactiveRaz

thanks Hazel, and even if it is something I know I can deal with it with my very nice hospital team, I think it was the shock.

RadioactiveRaz over 3 years ago in reply to juliesss

Hi it will be a huge shock hopefully biopsy will be on next week or 2.
When did treatment finish ?

Hazel x

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

juliesss over 3 years ago in reply to RadioactiveRaz

mid June. MRI scan in december was OK.

RadioactiveRaz over 3 years ago in reply to juliesss

Will tag Dani kniw she had similar mri then pet ct scan Beesuit

Hazel xx

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

juliesss over 3 years ago in reply to RadioactiveRaz

have been chatting on the facebook head and neck group too thanks Hazel, she did say she had a false positive - really hoping for the same

RadioactiveRaz over 3 years ago in reply to juliesss

Everythjng x keep in touch

Hazel xx

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

Beesuit over 3 years ago in reply to juliesss

Hi Julie. Yes I too had a hotspot. I remember the panic. They had me in straightaway and biopsied it. There was nothing there. I’m keeping my fingers crossed for you xx hugs.

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I BLOGGED MY TREATMENT

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

juliesss over 3 years ago in reply to Beesuit

was yours in your tongue Dani?

Beesuit over 3 years ago in reply to juliesss

Yes base of tongue.

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I BLOGGED MY TREATMENT

Macmillan Support Line - 0808 808 00 00 7 days a week between 8am-8pm

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Disappointing PET scan result