Hi all
A bit of background - my 80 yr old mum had a mouth cancer (inside left cheek) diagnosis at the end of Jan 2021. It was stage 4 with secondaries in the lymph nodes. There were quite a few delays and surgery finally took place on April 10th. The pathology report confirmed that they didn't get a satisfactory margin so they recommended radiotherapy but mum declined. She was advised by the hospital that they would keep a close eye on her and sort out a care plan. However, apart from a 1 week post discharge from hospital follow up appointment we have heard nothing. Back in May mum said something didn't feel right in her mouth and after I called the hospital 3 times and I got an appointment. The registrar found some odd looking tissue and took an emergency biopsy, which confirmed it was just inflamed tissue and nothing sinister - phew!
She was sent a 3 month post operative appointment for July 8th but this was cancelled on the morning of the appointment. This has now been rescheduled for August 9th which will be 4 months post operative. She was told that her tumour was very aggressive and it grew so much between diagnosis and surgery that resulted in her losing more area inside her mouth than expected (cheek, palette, part top jaw and part bottom jaw) so I am so surprised that she hasn't been seen earlier than 3 months - now 4 months - post operatively.
She had head/neck/chest MRI and CT scans at the beginning of Feb which resulted in her requiring a PET scan in March but that was the last time she was scanned. My worry is that she now no longer has any feeling in her left cheek so if it does come back (and we have been warned that this is likely as she didn't have radiotherapy) she will not feel any pain as she did before. So, as far as I can see scans will be the only way of showing it comes back as the inside of her left cheek is now a skin graft from her thigh with no nerves.
Will she have blood tests?
Is 3 months post operative check ups normal? This isn't really what I call keeping a close eye on her but maybe I am being unrealistic?
Will she have more scans?
I ask these questions as yesterday she told me her mouth feels odd - that the area around the skin graft feels (from moving her tongue around inside her mouth) like it is "spreading " and area's where she had native flesh left now feels like the graft is taking over.
Does anyone have any info about what is a normal follow up period and how frequently mum is likely to be seen? Is she likely to have another scan or does she have to wait a few more months?
Thank you for reading.
Linda
Good evening Linda, sorry to hear that your mum has not been looked after properly, from what you have described and what your mum has gone through the after care is very poor indeed. I would suggest you phone the Head and Neck clinic for an appointment a.s.a.p, mainly because she should not have had to wait this long for a check-up. You are right in saying about the loss of feeling as i had had quite a bit of surgery in my mouth and neck where i have no feeling in certain areas so it can be hard to notice any changes. I know we have been through Covid but this is not a good enough excuse why your mum has not been seen. They might do a blood test unless its difficult for your mum to give blood so but maybe an ultrasound scan will be done first to see if there are any obvious issues. Im so sorry your mum has not received the proper treatment, wishing you both all the best, take care.
Chris x
Its sometimes not easy but its worth it !
