SNUC

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My 24 year old son was diagnosed with SNUC in August. He was suffering with severe headaches since April 2023 as he was young it was never investigated. This is the reason doctors have given. I took him to A&E in July they said it was sinus and prescribed antibiotics.  It didn’t get any better. We booked to go on holiday in August and I said we will try the private healthcare in North Cyprus. As soon as the doctor saw him she said this isn’t sinus. After a MRI and biopsy he was diagnosed with SNUC that had spread to his right eye and brain. We flew back straight away and he started his chemotherapy in September at UCLH. 
After each chemotherapy he would have an infection and be admitted to hospital. After the second chemotherapy he was very ill. The doctors decided he needed surgery as the cancer was not responding to the chemotherapy. The surgeons removed 95% of the cancer from his nose, eye and brain. 
Five days after his surgery the nurses allowed him to have a shower with no supervision which should not have been allowed. He had to be supervised at all times as he just had a major brain surgery. Whilst in the shower on his own he fell and stopped talking and walking. 
After 18 days the cancer grew back, it is so aggressive. The doctors will not continue with his treatment. The plan was after surgery he would have radiotherapy but as he it is so aggressive they have sent him home to be comfortable. 
I cannot lose my son, I want to try and get a second opinion. I feel the NHS have let him down several times and I cannot do the same. Since coming home he seems like he is still fighting to stay alive. He seems so much happier. I can’t let him go now. Does anyone have their own experiences or advice they can give me? 
Please 

  • Hello Gizmo98

    I am so sorry to hear about your son's cancer. I am a Mum with a son myself and can not imagine how hard it must be to be in your position.

    It is natural that you want to do everything possible to help your son and getting a second opinion is a good idea. Even just exploring whether there are any other potential treatment options is something that you can do with the doctors. I am sorry that you feel that the NHS have let him down. 

    I will pop a link to some information about how you can go about doing this.

    Getting a second opinion | Macmillan Cancer Support

    Also it may be worth giving the Support Line a call tomorrow and talking things through with one of the team. They may have other suggestions that you can explore. 

    Hope this helps a bit.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you Jane. I will have a look at the links you have sent me. I have done some research and contacted the SNUC foundation in America. They’re talking about immunotherapy and proton beam therapy. It looks like we have to go private. If they can help I will have to take a mortgage out to pay for his treatment. 

  • Have you asked about any clinical trials? Cancer Research UK has a search facility. 

    A second opinion can only help I feel as someone new looking at his medical records might throw up something that could help. May also be able to advise whether the particular immunotherapy and proton beam therapy would likely to be effective and whether there is a chance it could be done in the UK. I have not heard of the SNUC foundation in America but I wonder whether there may be a specialist in this area in the UK. 

    Maybe worth giving the Support Line a call tomorrow and asking?

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I will call the support line you have sent and also the Royal Marsden to enquire about immunotherapy. 
    what has happened to the NHS? It’s falling apart. 

  • I hope that you can get some answers and some help for your son

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm