Hi All.. I am not reaching out for myself this time but a friend of mine. Unfortunately they were diagnosed with adenoid cystic carcinoma in trachea. They have had two operations to remove the tumour and will be starting a course of 30 radiotherapy sessions shortly. They asked me due to my own experience (chemo and 30 zapping sessions last year) what they can expect from the radiotherapy, side effects and what they can expect. I had mine my tonsil and neck and it was not the nicest experience I have ever had but got through it.. but the trachea is a rather different area. The reason for posting this here is that his care team is split at moment as they fall between two camps due to the rarity and nature of the cancer. Any advice in general (inc pointing me in a different direction) and anyone that can share any experience I would be very grateful.
kind regards.
Hi Montus
There is an ACC group here but as it's a rare cancer posts are limited.
Adenoid cystic carcinoma forum
There are support groups on FB
I suspect though that what your friend seeks is practical help with RT
I should imagine the side effects would be similar to the ones you suffered. I know certainly that patients with RT for larynx cancer get sore necks and swallowing pain. I suppose it depends on how high up the trachea the radiation is targeted
Their team is best placed to describe what is to be expected
I hope your friend finds the help they need and I'm sure yours will be the best shoulder to lean on.
They can always look in here as treatment progresses
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
