My journey started in Nov with a trip to the dentist to enquire about a lump in the floor of my mouth that had been there about 4 years. I did once visit a walk in clinic but I never followed up on that appointment. I visited my dentist in Oct 2013 because the lump ( about the size of an almond) in the floor of my mouth was feeling sore. It has done this on and off over the past 4 years and usually I just put bongella on it, but this time I thought it might have been an abscess Dentist referred me to the maxi facial clinic.
In late November I was sent for a CT which also turned into a fine needle biopsy ( they are fun!) Two goes at it and he still didn't think that he had a good enough sample but recognised I wasn't keen to have a third go!
Next I get a call middle of December asking me why I hadn't attended my MRI appointment - melt down- no letter had ever arrived to me - so I was rescheduled for Christmas Eve and my consultant appointment for the 23rd cancelled.
Follow up appointment 10th Jan scan shows no signs of any thing else; lymph nodes clear and the needle biopsy didn't get anything useful.
Consultant decides that my sublingual salivary gland needs removing so they can find out what's causing the lump this would probably be late February, but I'm told it's not urgent. I'm told it will be done at a hospital where they specialise in this. Feb comes and goes , so does March, then suddenly a host of phone calls to arrange the procedure. I end up being told I can have it done at the local hospital ( where previously I was told they didn't do it) by a different consultant and I end up having the op end of April.
That goes smoothly and heals up nicely as I'm waiting for results.
Post op follow up no results. After 2 weeks I get a call and I'm told that it has unusual features and has been sent for a second option, but very much led to believe not canerous. Another appointment is scheduled. 5 weeks after op go for appointment- still no second opinion results, ( have gone by myself after previous info suggested not canerous) I have melt down ( explain that last year watched my dad go from fit and heathy 74 year old to being taken by lung cancer in 6 months- so slightly sensitive to all this type of thing) phone calls made and told lab can get results in about 50 mins. I return to be told it is In fact cancerous. Booked in for a PET/CT scan to see if it's primary or secondary.
Everything goes through your mind- every possible outcome, and I totally focus on the negatives.
13 days later off to mount Vernon for my PET/CT ( fabulous centre) the big results meeting with the consultant the following Tuesday. Very stressful time waiting not helped by thinking I found a lump in my arm pit and panicked hysterical visit to GP, who said it she didn't think it was of concern.
Results meeting- Scan has shown no signs of anything else, lymph nodes - apart from slight glow on opposite salivary gland- possibly due to,over working. Given through visual and poking exam.
Suggested course of action- floor of mouth removal, forearm flap repair and neck dissection to remove lymph nodes. Possible need for RT later. Multiple D team meeting the following day to confirm. Meet the lovely nurses who are very supportive and fab. Multi D Meeting- everyone agrees it is a cancer, but three labs later and they still can't confirm what type. Suggested action as Confirmed but not sure about the RT until they look at what's removed and I'm booked in for 2 weeks later. That's now 3 days away.
This journey was painfully slow to start and is now a whirl wind. I'm not sure I'm totally taking in how huge this operation is going to be, as I think I was so relieved the scans suggested this was the primary, and the majority was already out. I could have all this done, and it be clear, but I just want it out, and the consultant agreed he thought this was the best action. It's been comforting to read others stories, and there are a couple of people who seem to be very similar with their situations, I'd love to get in touch find out more about your journeys.
3 days....... I shall keep blogging to the best of my ability over the coming weeks
