This is the first time I'm posting on this forum. Apologies for the long winded posts but I'm so scared at the moment.
I was diagnosed with SCC right side floor of mouth in 2006 at age 32, never smoked and was a social drinker. It was T1 with no nodes. I had part of my tongue, floor of mouth and some of my jaw bone removed and replaced with a forearm flap and also had a neck dissection. No chemo or RT as no nodes were involved.
Been happily getting on with life until 6 weeks ago i got ear pain and a sore tongue on the left side. Went to GP to see if I had an infection but he couldn't see anything. Week later went to the dentist who referred me as she said the back of my tongue was a bit swollen but she couldn't feel any lumps or bumps.
Whilst I was waiting for the appointment from the maxillofacial clinic my other half said lets get an MRI done so we can take it with us to the appointment.
Went to the appointment with the consultant 3 weeks ago but the MRI report hadn't made it into his file. He had a look and said there was nothing concerning and discharged me. 3 days later my dentist called as she received the MRI report which showed an area of high intensity on the left base of tongue and enlarged lingual tonsil and slightly enlarged lymph nodes. That weekend was excruciating.
Whist the dentist was referring me back I managed to get hold of my original consultant and he looked and the MRI report (but not the images) and said he wasn't too concerned but they could do an ultrasound of the lymph nodes. I also had a private consultation with another of my original consultants and he examined me and looked at the MRI report and said he wasn't concerned but could do a nasoendoscopy and ultrasound to put my mind at rest through the NHS clinic (my private health insurance won't cover me for SCC anymore).
My dentist was trying to get me referred back to my original consultant but because I'm living in a different area now the appointment that came through was back with the first consultant I saw. I saw him yesterday and he felt further back on my tongue and said there was a lump and that my lingual tonsil looked inflamed. He wants me to go back to my original team for further investigation as he said they will have all my previous records and scans. So now I wait again for another appointment...….which is extremely frustrating. I'm off my food because of the anxiety.
After my first experience I changed my career and retrained as a nutritionist. I'm self employed and my job involves talking to people. I'm scared that this time my speech will be affected and how will that impact my career.
I never thought this would come back to haunt me 13 years later and I'm absolutely petrified.