I've recently (May 2026) been diagnosed with oropharyngel cancer at the base of my tongue having first noticed a lump in my neck back in April. So having had my tonsils taken out, Blood tests PET Scans MRI, CT Scans and had biopsies twice (first set were inconclusive) I finally got a diagnosis for the prime site at the base left and centre of my tongue (sorry if that's wrong - I'm new to all the jargon too).
I was given reassurances that this was the only site, well that and the lymph node in my neck and now have a treatment plan in place which is due to start on Friday 10th July with the removal of teeth.
Then out of left field yesterday morning I take phone call from the Urology dept, telling me that the ENT department had referred me to them as an abnormality has shown up on my PET scan from 28th April an that they need to investigate further.
Talk about throw a lobbing hand grenade my way with the pin already pulled. So I'm now scrabbling around trying to find out the implications as I'm not sure what that means for the plans already in place. I'm frustrated that this has taken so long to tell me and angry that the ENT didn't bring this to my attention before this!
I feel the trrust we'd built is already under threat
Can I have treatment, likely to be radiotherapy on two sites whilst also have chemotherapy? Of course typically I now cant find anyone to talk to... Help! Please!
Hi AllenP and a very warm welcome to the Macmillan Community but so sorry to hear about the journey you are on.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
…….. support groups.
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link(s) above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
