I had a panendoscopy today, I’ve been told that I am suitable for TORS (transoral robotic surgery), so I now have a pretty big decision to make.
Essentially, I have two treatment routes:
Option 1: TORS + neck dissection, followed by radiotherapy
The potential advantage is that I may be able to avoid chemotherapy and possibly have a lower-dose/tailored radiotherapy plan.
BUT…
We won’t know exactly what we’re dealing with until the tumour and lymph nodes are removed and examined under the microscope. If the pathology shows certain high-risk features, such as significant extranodal extension or involved margins, I could still need chemoradiotherapy after surgery.
That would mean having TORS + neck dissection + radiotherapy + chemotherapy, which is the outcome I’m most concerned about because of the potential cumulative long-term effects on swallowing, fibrosis and quality of life.
Option 2: Skip TORS and go straight to definitive chemoradiotherapy.
No surgery and no uncertainty about needing chemotherapy afterwards, but potentially a higher radiotherapy dose plus chemotherapy from the outset, with its own short and long-term side effects.
Both are being offered with curative intent. My priority is obviously getting rid of the cancer and minimising the chance of recurrence. But I’m also 48, and I have to think about what my swallowing and quality of life might look like in 10, 20 or 30 years. Also have 4 kiddos to think about.
There’s no crystal ball. That’s what makes this so difficult. My cancer is in my left tonsil, hpv16+, t1,n1m0, localised to that side of my neck, no swallowing problems at present.
If you’ve had HPV+ tonsil/oropharyngeal cancer and faced a similar decision, I’d genuinely love to hear what you chose and why. Particularly if you had TORS followed by radiotherapy, TORS followed by chemoradiotherapy, or primary chemoradiotherapy.
How has your swallowing been long term? Would you make the same choice again?
Obviously I’ll make the final decision with my medical team based on my individual case, but hearing real-life experiences would be incredibly helpful.
If it’s any help I was T2N0M0 but unsuitable for surgery due to the location of the cancer at the base of my tongue. Though I had no nodal involvement I had both sides of my neck treated with a lower dose to the unaffected side.
I had 66Gy
i didn’t swallow anything for eight weeks during treatment but did my exercises and never had problems swallowing once the pain had gone away
I am seven years clear and still do my swallow exercises. I was told these are for life as fibrosis is an ongoing risk.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Have a look through the threads here
https://community.macmillan.org.uk/search?q=Tors#smpq=Tors&serpq=Tors&serp=1&serpgroup=100
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
So did you only have RT or CRT? It’s really reassuring that you are that long out without any real side effects.
Just RT as no cancer in nodes
My mouth is dryer than it was, mostly at night. Like Hazel I obsess about oral hygiene but it's now become routine and I don't notice it. I used to get twitchy about not getting to the bathroom if I was out for a meal but I'm much more relaxed about it now. I use Duraphat toothpaste which you'll likely be given by the hospital if you have radiotherapy. On top of that I have my dentist/hygeinist put on a fluoride varnish every three months.
If you have an NHS dentist hang on to them...hen's teeth (sorry about the pun) I have had one problem post treatment which would probably have happened anyway. I broke a tooth that had been crowned 25 years ago. It cost a lot of money to get fixed.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
