TLC & Advice Please Throat & Lung Cancer

[Alyaz]

Hi everybody. My dad is 69. Until last year was fit & active. Young for his age you might say. In March 2015, however, he was diagnosed with cancer of the tonsil -it was fairly extensive T3 & had travelled to the lymph nodes.  The doctor said "there's nothing here that I can't zap I am sure". If only. My dad went through chemotherapy which he tolerated well. He then had 30 doses of radiotherapy which, because of the location of the cancer, meant that he suffered enormously with horrendous mouth ulcers. He couldn't eat, speak or drink and relied totally on a feeding tube in his stomach (PEG) for his nutrition & medication. He also had a neck dissection to remove the lymph nodes on the left side as some had been resistant to the treatment. We were told that one was "leaking". He began to recover slowly & even started eating soft foods. Following another scan, however, the doctor suspected that there was further cancer in the throat. My dad had a pan endoscopy biopsy from which he hasn't recovered. The pain is now unbearable again. The biopsy showed no cancer. He also had a biopsy through needle aspiration. This showed no cancer. Because his symptoms are still severe In the throat, they are assuming that there is still cancer there but the biopsies haven't shown this. Could the 2 biopsies have failed to detect the cancer? Could the pain still be caused by the treatment and the huge biopsy on newly formed tissue? Last week, my dad was admitted to hospital to try & help manage the pain & also to help undergo further tests. This revealed that he now has a small (2.5cm) tumour on the lung. The doctor feels that this will be a secondary tumour having travelled from the throat. She feels that to biopsy this will be too much for my dad. She plans to try chemotherapy to help shrink the tumour & provide some quality of life - he has none at the moment - his pain is being managed by such a huge drug regime that he is exhausted. He isn't eating. He is sipping the tiniest amount of liquid. It is breaking my heart. He has struggled so much, I just want him to have a little quality of life. What if she is wrong though and there is no cancer I the throat and the cancer in the lung is a primary which could be operated on? Any advice would be so appreciated x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Alyaz,

I am so sorry your dad is having such a distressing time at the moment. I am sure you are reassured that he has been admitted to hospital for symptom management.It sounds as if he has been investigated thoroughly and the medical staff are guided by the results of the investigations they have carried out. You should speak to the charge nurse or medical staff to discuss the concerns that you have about the secondary tumour and they will explain their reasons for coming to this diagnosis.

Often patients experience pain as you say as a result of treatment.Some side effects such as mouth ulcers you dad has experienced can indeed be very distressing.Managing complex pain is important. In relation to the unbearable pain, it is important that your dad lets the nursing staff know exactly where the pain is(often patients have more than one one pain and in different locations)which require different medications to manage it). Locally the tissues in the mouth and throat can be slightly inflamed following a biopsy which can also cause pain.I am sure the staff will have asked him specific questions about the pain,for example what type of pain it is( for example burning, shooting). Mouth pain can be helped by using  specific pain relieving mouthwashes,ask the staff in the ward for advice about this. Also, using detergent free toothpaste( some are available on prescription or from a pharmacy) can be helpful as many toothpastes contain a substance Sodium Lauryl Sulphate SLS ( a chemical to create a foaming action which may irritate existing mouth ulcers which can exacerbate the pain and affect the quality of life).Some patients can also develop a fungal infection which may cause mouth discomfort, and require specific treatment, I am sure the nursing staff will have examined his mouth to exclude this.

It sounds as if his pain management is being addressed by drugs as you say, but it is often these little local meticulous mouth care measures which can be hugely effective in relieving mouth discomfort.

I hope this info is helpful. Please feel free call our Helpline Free phone [phone] option 2 and one of the nurses or support staff will be happy to talk to you. 

Best wishes

[Alyaz in reply to RoyCastleHelpline]

Thank you so much x