Hey all
In 2020 i had treatment for tonsil cancer with spread to one lymph node, it was a complete response. They noted a small parotid mass at the time but didnt treat it (thought to be benign)
My first consultant did say it needed monitoring but my second consultant was uninterested in it as it was 'only 3mm'.
At my last july check up i mentioned the parotid tumor and he had clearly forgotten about it and gave me a blank look. Once i got him to check his notes he remembered and said he would order a scan to check it for peace of mind.
Roll on to this friday, still no appointment after five months waiting, i get a call late on friday saying 'your scan is monday morning at a hospital 50 miles away' ... i was due to leave the country first thing Monday on a long planned business trip so said i would have to reschedule as it was simply too short notice. I know- this was a mistake, but i thought it was a routine thing.
It was on my mind all friday, so i booked a private scan for peace of mind at ultrasound plus in birmingham for today, very professional and thorough, sent the images and report to me within hours, they said there is a mass there, which is now 13x12.9x13mm so it has grown about a centimetre in 5 years.
Obviously i now wish i had cancelled my planned trip and gone to the NHS ultrasound despite the ridiculous lack of notice given - i have sent the report and images to my consultants secretary
However will they look at the report and images as it is a non - NHS source? a friend who had knee issues was unable to get her GP to look at private scans so i am a bit worried
On the positive side the sonographer said he couldnt possibly diagnose but he didnt think it 'had the typical characteristics of malignancy' because it was well circumscribed had no extra blood supply and was a regular smooth shape etc, but that i needed to go to GP or consultant given my history.
I think it would help if i understood the terminology in the sonographers report perhaps? (below)
SOFT TISSUE NECK SCAN DONE WITH PATIENT CONSENT. FINDINGS:
THERE IS A LOBULATED HETEROGENEOUS WELL CIRCUMSCRIBED MASS IN THE RT PAROTID GLAND, MEASURING (12.9X13.0X12.9) MM.
NO ASSOCIATED INTERNAL NEOVASCULARITY IS DETECTED ON COLOUR DOPPLER. REST OF RIGHT PAROTID GLAND AND LEFT PAROTID GLAND ARE UNREMARKABLE.
ANTERIOR NECK TRIANGLES ARE NOTED WITH MORPOLOGICALLY NORMAL LYMPHNODES.
BOTH SUBMANDIBULAR GLANDS ARE UNREMARKABLE.
IMPRESSION: .
RIGHT PAROTID HETEROGENEOUS AVASCULAR SOLID TUMOUR, MEASURING 13.0MM WIDEST. PATIENT REFERRED BACK TO GP FOR FURTHER MANAGEMENT.
Thanks.
I wouldn’t wait. Phone.
Do you still have your CNS contact details? Phone there as well.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Trev
I would ring Monday morning the medical secretary might be on holiday or off I’ll and no one’s out yet out of hours on. Just call
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
I was never given a CNS contact (i assume you mean clinical nurse specialist)
I guess i can call on monday, the consultant had genuinely forgotten about the parotid mass, when i bought it up in June i got a blank look and then he went through all my notes to find out what i was talking about.
Its hit and miss when calling NHS departments, sometimes they are pleasant and sometimes they can seem quite.... agressive is the only word i can think of. So it tends to put me off calling, but i will do cheers.
I will hazel, i dont actually have a number for the secretary or my consultant and dont have a CNS contact at all either, i guess i would just ask for ENT at the hospital i see my consultant?
When i get sent letters telling me of appointments i seem to get sent randomly to either good hope, solihull hospital or heartlands (i think they are part of the same group)
I dont know if i did something wrong but i have never had a single contact who is reachable like many on here.
So, i didnt lose any time by going on my trip, just a bit of money
Let us know how it goes.
You’d think the whole department pivoted around ONE consultant. Daft!
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Trev
glad you got through to someone and the scans are being read. Fingers x you’re not waiting too long. Please let us know.
hugs
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
The last correspondence i had on this was 2nd December, confirming the results had been received and sent to the radiologists
I have heard nothing since, am i being impatient? or would you think its now an appropriate timespan to chase?
Its been 10 months now since the consultant said i need an ultrasound ... and it just seems to drag forever, but perhaps i am being impatient, we have had xmas inbetween.
Hi Trev. You’ve been far more patient than I would have been. Get in touch tomorrow. Good luck
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
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