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.
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
Don’t worry. Your consultant will look at the report.
No GP is qualified to look at scans so that’s why your friend got nowhere.
My husband has similar knee issues. He had a private scan and asked his GP for referral which he did get but was told there was a year’s wait for a hospital appointment so he’s gone privately to get a new half knee.
idnt 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
Your consultant will likely come to the same conclusion given context so just arrange an appointment through your CNS and enjoy your trip
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Thanks Beesuit,
I have been in far worse situations than this, but for some reason this has stressed me, i think its because i thought cancer worries were a thing of my past.
I have already emailed the consultants secretary, as you say i will focus on my trip (if the company had not spent thousands on the trip i would have gone to the appointment even with no notice)
Thanks again, i appreciate the response.
i think its because i thought cancer worries were a thing of my past.
I found out by accident shortly after I finished treatment that I had a lesion on my thyroid cartilage ( part of the larynx) The sonographer checking it ( I thought I was in for a routine neck scan) told me it was well circumscribed and the same size as before treatment and likely a benign chondroma I put it away and forgot about it Your post has reminded me but I’ve put it away again
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Gosh, i suspect there a lot of people with benign masses that they know nothing about (now you mention it i remember when being investigated for a urology issue they found benign kidney nodules)
Did you not follow it up at all?
Anyway i am reassured, thanks- it has been a fairly expensive day today but i am no longer worried that rescheduling my NHS appointment has cost me time.
Did you not follow it up at all?
About two years later I mentioned it to a young and hugely enthusiastic Maxfac registrar. He said the only way to tel was a biopsy. His boss ( one of my consultants) stepped in said it was invasive and likely a waste of time. I wasn’t keen either. I put my head in the sand where it remains.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
TrevW said:Gosh, i suspect there a lot of people with benign masses that they know nothing about
Hazel, RadioactiveRaz has a papilloma on a vocal cord. That’s done nothing in six years
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Hi Trev
good to hear from you still remember you going through treatment. Like Dani says I’ve got a lesion on my vocal cord and it goes straight out of my mind and never even thought about it until Dani just tagged me in your post go away enjoy your business trip and file it away under file 13 and your consultant. I’m sure will have looked to siby the time you get back and come to the same conclusion as that Dani is just said, I’ll file mine away now cause I’ve totally forgot about it
mine was found on a routine camera up the nose the day before we were getting a boat to Spain for 10 week so I certainly forgot about it then and I filed in in file 13 dealt with it when I canecback and it turned out that it is nothing it’s just benign and it sits there. I don’t even know I’ve got it.we jointly decided in my 5 year appointment to leave it as surgery would be far too invasive.
stick around occasionally Trev we like to hear from our past mates.
hugs Hazel p s still making typos 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
Hey Hazel, i remember you well :)
I am so glad your lesion was benign and that you are doing well, apart from the little scare here i am doing well too (although i need to diet!)
I will definitely pop on occasionally - this place was such a resource for me during treatment - its a great place.
Hi Trev
one life just live it still my motto. Pop back in when you're back from business trip.
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
Just an update on this, it has been a week since i sent the email to the consultants secretary with the scans, scan results and asking what should be done next
The consultants secretary hasn't acknowledged the email in any way (she has in the past for other concerns).
I have no idea if i just need to wait longer or if they have dismissed private scans as irrelevant.
How long would you guys wait before chasing?
Thanks.
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