Hi everyone,
I have just been diagnosed with ACC (submandibular gland). I am waiting to go in for a final bone biopsy before surgery, which hopefully will be in June. I know it’s the start of a long journey and I hope to lean on you guys for the future.
The journey so far:
In late 2019 I started getting nerve-like pain on the left side of my tongue. I also had occasional twitching in the left side of my chin and pain in my lower jaw. My GP referred me to a Maxillofacial Surgeon who carried out a visual examination and could see no cause. She suggested to wait a few months and then book a second appointment for appraisal. Then Covid hit and all non-urgent appointments were cancelled, with the exception of one call from the MaxFax dept to ask how things were going.
In September 2020 my mouth started drooping, I was slurring my speech, the twitch was worse, and I was taken to hospital with a suspected stroke. An MRI ruled out a stroke, but it did discover a malformation on the brain called a DAVF. The neuroscience team believed the mouth abnormalities and the DAVF were unrelated. I underwent a procedure for the DAVF and that is now behind me.
After recovery from the DAVF I noticed that my mouth issues were worse. I was referred in turn to a Maxillofacial consultant who arranged an OPG and diagnosed a tooth with inflammation and suggested extraction. After extraction the symptoms worsened and I was referred to a Neurologist, and an ENT Consultant and yet another MaxFax examination. Finally, after MRI, CT and Biopsy I was diagnosed with ACC last Friday.
Hopefully things will progress now that we have a name for the issue. I must admit that I am a little stressed that it took 18 months from my first MaxFax referral to actual diagnosis. In those 18 months I have had 5 MRIs (4 head and one Neck) and have seen 4 MaxFax consultants, an ENT Consultant and 2 neuroscience consultants. Should it have taken so long? Lost time…………
Hi Brian Mc and welcome to the Online Community but sorry that you had to find us and especially sorry to hear about your diagnosis.
A cancer diagnosis can be challenging in so many ways but talking with others who are walking the same type of cancer treatment journey can help you navigate this difficult time I see you have joined and indeed posted in our Head and neck cancer group as this will be a good place to connect with filks going through the same type of cancer journey.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service can give lots of cancer information, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section.
All the very best
Lol..... if it actually gets to the point the mistake gets to you emails the team admin and they can change it for you 
