My partner has advanced olfactory neuroblastoma with a large tumour inside his mouth and in the surrounding bones of upper jaw and eye socket. The tumour is growing quite fast and will before long affect his breathing and swallowing. His pain is currently well controlled and he is on palliative care only.
This is a recurrence of the same cancer from over 20 years ago and he had the full programme of surgery, radiotherapy and chemotherapy at that time. Because of the fragile state of the affected bones, his oncologist is unwilling to give any further radiotherapy. He has been told that chemotherapy would be of no use.
It has been suggested that the tumour could be wholly or partially removed surgically and the roof of his mouth, which would as a result be left raw, could be replaced with a flap of tissue taken from his thigh. The hospital stay would be two weeks and recovery time after that, three months.
Has anyone any experience of this type of reconstruction and what support he would het at home. I need to have a realistic idea of what the nursing needs would be after discharge from hospital so as to make provision if this goes ahead. We are both in our 70’s, have no family support and I am his sole local carer.
Hi Felicity and I see it’s your first post so a warm welcome to the Macmillan Community but I am sorry to hear about your partner.
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 recently 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' treatment journey, be it as a patient or caregiver can help a lot.
The community is actually divided into dedicated Cancer Type Support Groups (Discussion Rooms) so can I recommend you look to join and post in our dedicated…….
……. support group.
This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
