Hi everyone,
I’ve been lurking on this forum for a wee while, but this is my first post. I can’t tell you how helpful just reading things here has been so far.
I’m only 39, non-smoker and don’t drink much, but was diagnosed with T2N0M0 tongue cancer in January, and have recently undergone reconstructive surgery. In the end, the tumour was much bigger than they’d hoped, so I’ve ended up with an anterior glossectomy and bilateral neck dissection. Pathology results ‘upgraded’ my staging to T3, but the good news is they got good healthy margins and there’s nothing in the lymph nodes.
However, the cancer cells showed as particularly aggressive and, given the fact I got this without any of the usual risk factors, they are concerned about the potential for recurrence. I saw an oncologist for the first time yesterday to talk about the pros and cons of radiotherapy, as it’s not clear cut whether I should go ahead or not. All a bit daunting, because up to now, I haven’t had much choice about treatment.
I’m recovering well from surgery, with my NG tube removed before coming home and managing fine on a soft/level 4 diet. My taste is largely unaffected and, though not much to look at, I’m enjoying food. My speech is also much better than I expected, given I lost the tip of my tongue, and I haven’t had any problems being understood so far. I’m not really taking any painkillers and I’d say the worst thing is fatigue right now, but that’s still to be expected after a 10hr+ surgery.
I think it’s more likely than not that I’ll go ahead with radiotherapy…I’m a belt-and-braces kind of guy, and the oncologist reckoned it could at least half the chances of the cancer returning. But I am worried about the potential side effects…I know I’m likely to end up back on a feeding tube, and although frustrating, I think I can live with that, at least in the short term. I’m a bit of a foodie, and have been really pleased to get to where I am with eating within three weeks of the op. I know it could take much longer than this after radiotherapy, but at least there’s a bit of light at the end of the tunnel. I know it will be really uncomfortable too, but the biggest thing I’m worried about is speech. I know it’s likely to set me back again, but I don’t know how much, or for how long.
We have a toddler, who is coping ok with everything so far. He knew I’d be “talking funny” when I came home from hospital, but it’s upsetting him a bit already, and I find reading to him a real challenge. I know my speech will never get back to normal, but I wonder how long after treatment it might be before I see improvements.
What are your experiences? What should I expect really? It feels like the right thing for me to do, but I’ve got a long time to live with the consequences of my decision.
I saw an oncologist for the first time yesterday to talk about the pros and cons of radiotherapy, as it’s not clear cut whether I should go ahead or not. All a bit daunting, because up to now, I haven’t had much choice about treatment.
What does your oncologist say?
Sorry but I’m going to a little brutal here
Something I might consider is a second opinion. To my mind we are all different and how one of us handled such an important decision has little bearing on your pathology.
Another expert can simply see your notes and scans. There’s no need to see you in person.
Unfortunately there are people who had no RT and were fine and others who had recurrence.
Yes, if it was me I would go for a second opinion at a major cancer centre excelling in treatment of HNC.
Best wishes
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
