I thought I would start a single thread to discuss my ongoing treatment rather than it popping up in multiple threads.
For those new to the site a brief synopsis of "Round 1" is below.
I will update this tread as things happen and bits fall off or are removed from me as time goes on!
Synopsis of Round 1:
Late Sep 2019 found a lump in my RHS neck. Within a week had it checked by the GP and was on a 2 week pathway. Ultrasound scan and needle biopsy.
Oct saw ENT and was told the needle biopsy was clear, but they would like to take the lump out ASAP just to be sure. Glad they did as it came back SCC HPV+. OMG - moving from all OK to cancer in one very uneasy step!
I found this out 3 days before going to the USA for a 3 1/2 week holiday. We still went and I spent the time enjoying myself, getting my head around things and booking all the scans and appointments I would need on my return. I was in PET/CT & MRI scanners within 24 hours of landing back in the UK and discussing treatment pathways within 3 days of completing the scans.
With Christmas coming I was lucky that the planned biopsies were scheduled for the first working day in the New Year. Looking back I am grateful that I had a "good" Christmas.
The tonsil and tongue biopsies were clear, but we knew the cancer was or had been there. Probably in my tongue. Despite the clear biopsies we agreed to remove the tonsils and the RHS Level II downwards. Tonsil surgery hurts! Neck dissections are easy (in comparison).
Histology did not find anything so it was decided not to move into radiotherapy as there was no "target". Instead I was on a 5 year "watchful waiting" program.
Covid has not really interrupted my treatment. I've been luck to work with 2 fantastic hospitals and some impressive clinical teams.
In the summer my check PET/CT was clear and the Covid rules allowed for a great socially distanced party!
However, my January check-up and scoping found some swelling in my tongue where we thought the primary may be hiding. I was booked in for a panendoscopy within a week and got the results 10 days later. The primary had been found. Hence Round 2!
Thursday 11 Feb 2021
Glad to have cancer! That may sound strange but having waited for a year to discover where the primary site was it comes as a relief to be told that it was found. Now I can get on with treating the cancer rather than worrying about every lump and bump being the primary or worse a spread from the undetected primary. Looking back it was actually quite debilitating despite the highs after each negative screening.
I can't thank my surgeon enough for his diligence. I was told that he noticed a slight swelling on my tongue which lead to him suggesting the panendoscopy. During that procedure he had to dig quite deeply to find the cancer, but now it is convincingly linked to the cancer found in my lymph node that started off Round 1.
Now the planning for treatment can start. Here's hoping that the scans show a well delineated cancer which can be surgically removed with good margins. Time will tell.
Wednesday 17 Feb 2021
Wow a legal day out during Lockdown 3 to celebrate my 63rd birthday! Off to the hospital for a CT with contrast. But that's at 8am and its a 30 mile drive. Early start.
Fast and efficient.
Next up MRI with Gad on Sunday afternoon (2 legal days out under Lockdown 3 - this cancer keeps on giving!) and onwards to the tertiary hospital for the MDT meeting and discussion of the treatment plan.
Wow twice in 4 days you dare devil. Happy 63 rd birthday same age as me for a week !
out on a weekend as well yes the cancer that keeps in giving. We all await your discussion with consultant.
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
Hi Peter you must be scanned and contrasted out. Yes they are pretty on the ball and efficient. I could never complain about any of my scans except perhaps some technical skill in venous access but there you go.
Fingers crossed for everything and keep us in the loop.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Next up MRI with Gad
For beginners here Peter means Gadolinium which is the usual contrast agent used at MRI scans
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Wishing you a very Happy Birthday Peter, sorry you are on round 2 but can understand your relief. We may even cross paths at UHS Head and Neck Clinic some where along the way on good ole C level are you under FS or one of the others, I passed him in the corridor yesterday while I was escaping. Keep us posted.
Love Mo xx
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