Hi,
I am now 3 months post treatment. Doing well, feeding tube out, tiredness getting much better & generally finally feel I am on the mend.
I had 35 RT & 2 Cisplatin chemo for squamous cell carcinoma of larynx- supraglottic tumour involing hypopharynx & lymph nodes.
I have not had my PetCT scan as yet & this is due 17th Feb. However, I have suffered headaches for the last 3 weeks- mentioned it to the Rehab team who were not concerned. So went to see GP as headaches were keeping me awake at night.
Its then the bombshell dropped....I had an MRI of my head at the end of Dec, for a totally unrelated issue, but the GP was able to access the notes(not that I have been informed yet) and it seem the notes advise something was spotted on the scan & there were "concerns of spread to frontal skull bone"- exactly where my headaches are!!
GP contacted the oncologist & the MDT are meeting next Monday to discuss this....but I have been left in limbo at the moment.
Just when I felt things were finally on the up- this has devistated me.
Does anyone have experience of this or have an idea what might happen next? My GP could not help & It seems I have to wait till next week to get any update!!!!
Thank you in advance
Yve
Hi Yve. So sorry to hear your news. It seems that your oncologist has the information and it is their job to make sense of it. I’m sure you will be contacted as soon as the MDT sort it out. It might be a good idea to ring your CNS on Tuesday if you haven’t heard anything. Fingers crossed this can be fixed.
Best Wishes
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
Good luck Yve. The uncertainty is horrid to live with.
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
Sounds like somebody should have informed you and Oncology earlier. I've found getting results, dates and tests a non stop battle. I had to an unexpctedliver MRI scan because of something that had 
en spotted when I had RIG tube refitted. I was a wreck for 5 weeks. I had to chase up results initially but it turned out to be OK. It's very tense and traumatic waiting and living like this. Youave my total understanding. Fingers crossed for good news, x
