Sinonasal Cancer

Hi Hibiscus,

Sorry to hear of you fathers and the family’s struggles with diagnosis treatment. I was diagnosed four years ago with a similar cancer which resulted in my nose, upper jaw, lip and gums being removed. It’s a devastating diagnosis to lose part of your face but it’s surgery that is necessary to help with the cure. It’s a hard process, but with the help and support of family, your team at the hospital and this online community it’s very doable. I am still going through reconstructive surgery, however I am otherwise healthy and living life to the full. If you want to ask any questions about any aspects of the surgery and recovery don’t hesitate to ask.

l look forward to hearing from you again, please keep in touch

Hi Hibiscus

So sorry to hear about your partner's cancer diagnosis.

I had jaw cancer so not quite the same but had to have 2 maxillectomies one in 2019 for removal of my right jaw in 2019 and radiotherapy and another in 2022 for removal of my left jaw so was left with no upper jaw at all. I had reconstruction surgery in 2023 with a titanium implant which dentures attach to.. It sounds as though your partner will have a right maxillectomy so will still have teeth and jaw on his left side. The surgeons cover the hole in the upper palate with either a skin graft or an obturator. I elected for an obturator which is like a removable denture that blocks the hole in the palate and managed very well with it until my second maxillectomy.

I have adjusted well to the changes although I have a few side effects but have now got back to doing most of the things I used to do previously and am living a very happy life. The surgeons are wonderful and it is amazing what they can do.

The op sounds really expensive. I live in Australia and I was lucky as I had private health cover but if I had not had that the op would have been done free of charge under Medicare which is similar to the NHS. Is the only option for your partner having the op done privately?

Over time I have had 2 lots of radioitherapy and the first lot I had to pay for privately as I was still working. It was very expensive and I had to take out a second credit card and pay it off over time. For the second lot I was retired so the radiotherapy was done through the public system and i did not have to pay for it.

If you have any questions about the maxillectomy like Lady66H I am happy to share my experience if it will help.

Sending you and your partner my very best wishes for his treatment.

Lyn

Hi Hibiscus,I’m sorry to hear what your partner,your Dad and yourself are going through,I see it has been 4 months since your last post,how are things going?I posted on here last year because my Husnd was diagnosed with sinonasal undifferentiated carcinoma T4 back in May.He went through 3 months of intense chemo followed by 6 weeks of chemo/radiotherapy,the treatment shrank the tumour down,hisad broken the bone through to the right orbital area,it had broken through the cribriform plate and was growing towards the back of head and was in the lymph nodes too,it was a very large tumour  now it is (well it was on the last scan) mainly in his sinus/nasal area,they still can’t operate as it’s too risky,we are awaiting scan results at the present moment in time.I still have lots of questions about what our future holds but we try to remain as positive as possible.I truly hope things are moving in a positive direction for you,hear to chat if you want to,take good care of yourself xxx