Hi, I'm Ben
I'm 30 years old and was diagnosed with tongue Cancer just before Christmas.The cancer is aggressive and with the 'safe margins' factored in by surgeons, over 80% of my tongue is affected.
I was advised to have a full glossectomy and also voice box removal as this would be the best chance of survival.
After being told the op would leave me unable to eat or speak ever again, I have refused the surgery and opted for strenuous chemoradiotherapy. My oncologist says its now 50/50 which are odds I'll take!
I have already undergone 5 days chemo. This will be followed up by another 5 days in a few weeks before 6 weeks of RT and more chemo.
I'm just wondering if anyone has been through similar? I'm not currently on solid foods. I am due to be fitted with a feeding tube tomorrow for the duration of my treatment.
Im hoping eventually I'll be back to eating and cooking my favourite foods!
Will this ever be possible after rt directly to the tongue?
Any advice or experiences would be greatly received!
Thanks,
Ben
Hi Ben. Welcome but sorry to see you hear under such extreme circumstances. I had radiotherapy to about a third of my tongue and have recovered well to eat and drink normally. It took six months before I was complete comfortable though and taste improvement continued for three years
I hope some of this helps.
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
https://todaymycoffeetasteslikechristmasincostarica.com
Hi Ben,
as Deni said, welcome 
sorry to see you here under such extreme circumstances.
i had 2 chemo and 30 rt, after 6 months eating and drinking normally.
My cancer was diagnosed year ago, base of tongue and had robotic surgery. Best of luck and hope this help,
Marta x
Hi Ben,
I’m sorry to hear about your diagnosis. We are similar. I have tongue, throat, and voice box. I was recommended the same surgery as well but I also said no. I just don’t want to spend the last of my
ime that way. Sorry, should have mentioned that I am palliative, the surgery was the only thing offered other than palliative radiation. It’s not meant to cure, only halt the growth to help manage sptoms. It was only 3 extremely high doses (higher than what people who still have the chance to fight their diagnosis would get). Iyou find yourself palliative (I hope you don’t!) I wouldn’t go foit. My own reasons but it sounds like we are both obsessed with food which is why I’m writing, LOL. It took away all taste. I can’t taste a damn thing and the radiation ended about 4 or 5 months agoAs for the surgery again, my doctor did say after I said no to the surgery he did say I am happy you are making that choice, in your case it will come back in other ways
