Name: Louise
Neuroendocrine Cancer Primary Site: Maxillary Sinus
Diagnosed: January 2024
Hospital: Morriston Hospital, South Wales
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Louise’s Story
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Diagnosis
The 3rd of January 2024 is not a date I will easily forget.
My diagnosis took place at Morriston Hospital in South Wales, under the care of a specialist ENT consultant, Mr Pope.
My only symptoms had been a slight swelling on the right side of my face, but nothing that I felt particularly alarmed about. But then I collapsed at work due to a severe headache (I am a Staff Nurse, so luckily, I was certainly in the right place at that time for a quick response to what was happening to me. It was very frightening).
Surgery and Setbacks
Since that day, I have undergone a maxillectomy (the surgical removal of the upper part of my jaw) with a free flap and bone taken from my fibula to replace my jawbone. Unfortunately, this failed because the replacement bone from my fibula (leg bone) didn’t take. I have now undergone 4 further surgeries, one being 15 hours long.
When reflecting – even though my experience was harrowing at the time – I do feel lucky that my surgery removed all my neuroendocrine tumour. I also underwent 2 Gallium-68 PET scans, and no other metastases were found. So, at the time of writing this, no chemotherapy or radiotherapy is required.
A Mother’s Heart
But as you can imagine, it has been life-changing. I was only 39 when diagnosed. I have 2 children, aged 6 and 12, and the impact this whole situation has had on my children has been devastating, especially my daughter, who is my shadow and only 6 years old. Support: Young Lives https://www.younglivesvscancer.org.uk
My parents, especially my dad, who took early retirement from his career as a super-intendent radiographer to help my mum look after my children during my Nursing training, have attended every appointment with me. He’s been incredible. One occasion that sticks in my mind was my appointment in January 2024, when we went together to get the biopsy results to find out what type of tumour it was. He continues to be a tower of strength for me.
Support and Strength
I don’t want to sound overdramatic, but I really felt as if I was walking into a death sentence. Both my parents have been incredibly supportive and have shown me so much dedication. My mother was also at my bedside for my stays in hospital, which was no mean feat with a resultant 5-week stay as an inpatient. I will never be able to repay the care and love they have shown me.
Even harder than the recovery from my surgery was being apart from my children – it was heartbreaking. I constantly worried about what they might be thinking and feeling, and my desire as a mother to protect them was huge.
What Comes Next
My follow-up plan now is for more surgery to correct my mouth, as a major nerve was damaged in my neck, which has resulted in a form of paralysis to the right side of my lip, and it doesn’t move.
I am also to have annual scans and am awaiting my appointment for the restorative dentist to be able to make me some dentures, as I had to have 8 teeth removed during my surgery. And where the flap failed, I had to use an obturator (a medical device which fills the gap) for 7 months to allow me to talk and eat.
My mouth is still currently healing as I had a large hole with access to my sinus. I am hoping that no further intervention is required to close the hole up, but my medical team are not sure yet. At the moment, I don’t currently have any feeling in the right side of my face, shoulder, and neck, but we are optimistic this may return once I heal more fully.
Rare, But Not Alone
I have been told that my form of neuroendocrine cancer is extremely rare, and almost unheard of in a maxillary sinus. I’ve tried to do a little research but I really can’t find much information. Thank goodness for Neuroendocrine Cancer UK – I’m part of the Facebook Support Group now and it’s helpful to talk to others, even if we have different primary sites. To my surprise, I’ve found the sharing of experiences very helpful, even though I didn’t really expect to.
Louise
Written February 2025
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Further Support:
- Please click here for the UK NET Centres of Excellence latest list.
- Please click here for the Family and Friends Support Group.