A couple of days later we were told in fact it was a very rare cancer and they could only label it as an adenocarcinoma. This cancer is in the post nasal space and is also attacking the skull base. His local ENT team in Gloucester and Cheltenham had to refer him to a very specialised team in Bristol where he had his tumour debulked at end of May this year. The consultant said that he had only seen three similar cases in the last twenty years.
During his post op consultations it was mentioned about what adjuvant treatment that would be required. This was because the surgeon was not able to remove all of the tumour because of it being right on and wrapped around his right carotid artery and other critical nerves. The surgeon mentioned to us about proton therapy. Now we had not heard about this at all so we went away and googled it. It is a very advanced type of radiotherapy with the main benefits being precision of the radiotherapy in relation to hitting only the tumour and not killing or damaging healthy cells and tissues. The accuracy is right down to millimetres. It is particularly successful with skull base tumours like my husbands.
Eventually back in August he was transferred back to the local team in Cheltenham and Gloucester with the recommendation that they apply to the NHS proton panel in Leeds for funding. Proton therapy is currently not available in the UK and for the last ten years the NHS having been sending people abroad for treatment.
Last week and nearly five months post operatively he was turned for funding to have proton therapy. We were absolutely devastated. He was told by his oncologist previously if he were a child there would be no question and would have the funding. This seems so unfair as there is criteria you have to fit, and my husband fits all of it.
We are still waiting for an explanation for the no answer and we have requested an independent panel review. But this may take months. Months that we don't have now as already 5 months have passed since surgery while my husband has been pushed and shoved between NHS trusts.
The NHS are now only going to offer my husband standard radiotherapy of which could have many long term complications because of where his tumour is. These could be having trouble to swallow and be on a continual liquid diet. It could affect his speech and facial nerves and also his eyesight. There is also a 50% chance that the cancer could return. These are because standard radiotherapy in this area will damage all healthy tissues around the tumour. All of these could be minimised with proton therapy.
We have been in touch with the proton centre in Prague who have confirmed that my husband is indeed a suitable candidate for proton treatment but the cost is £66600 (he needs 38 cycles) of which we simply do not have. We are looking for any help no matter how small to help fund this treatment and for some living costs as he would have to be away from home for around 8 to 10 weeks. We need to raise this money in the next four weeks.
Thanks for taking the time to read my husband's story and please share far and wide. Even just sharing would be a great help. My husband is mine and my children's absolute world as we are his and we only want the best possible treatment that will give him the best outlook. He is the main breadwinner of the house and only 42 and wants to be there to see his children grow up and be an active family man that he has always been.
- Steph Hollington
- Nicola Giles
- Kate Whitson
- Kerry Shearman
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