Hi
I was diagnosed with a cancerous tumour at the base of my tongue last Feb. I was told surgery would be too invasive, my doctor/consultant called it mutilation, also told neither chemo or radiotherapy would help. Had radiotherapy anyway, check up after, the doctor told me she could not see the tumour, believe it or not I got my hopes up. Finally had a CT scan, my consultant didn't see the point as "there is nothing more we can do". CT scan apparently is not clear as to what is on the tumour site, could be necrosis, a PET scan would show more clearly but I have not been offered this, can I insist ?
Don't know if I'm coming or going (no pun intended), can't put my family through all the upset of telling them I am dying again, they also thought that being told there was no sign of the tumour that the cancer had gone. We thought we had a future again. Now having to wait until mid March for next check up, feel so angry and frustrated, was I told wrong, did I not understand correctly. All this time has it been growing again, could I have gone on a clinical trial ? I try so hard to keep positive, I go jogging, eat healthy but doctors just don't seem interested.
Apologies for rant.
Good. morning and welcome to the Online Community, although I am sorry to see you finding us and sorry that you had to wait for a reply.
A cancer diagnosis can be very confusing and getting conflicting information can unfortunately happen and this bringing a lot of stress and many questions.
You need to keep pushing on the doors of your medical teams as you have questions that need to be answered. You may want to get a Second Opinion so do talk with your GP about this.
Can I direct you to this link to our very supportive Head and neck cancer group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
All the very best.
