My husband was diagnosed with stagev1 HPV tonsil and back of tongue, hand and neck cancer in December 2022. After having his left tonsil out, he had 6 weeks every day radiotherapy and 3 doses of cisplatin chemo during 2023.
All looked good, after recovering from all the affects, couldn't eat, swallow bad etc. Then in December 2024 after a scan it was noted that a lymph node in the neck was slightly enlarged, a biopsy was done and cancer confirmed. January 2025 saw an eight hour operation to remove all lymph nodes on the left side, they found cancer in 9 out of the 16 removed, even the scans didn't show all that, as it was so early. A recovery was made and another 6 week course of radiotherapy was had in April 2025.
Upon a scan of head and chest during June 2025, it was noted that there were nodes on the right lung, the cancer has spread to the lung, so immunotherapy was started in July. We had another scan and mri in January 2026 to see if the tumour was shrinking. It was but very slowly and devastating need came that there are 5 nodes on the brain now and the prognosis is about 6 months.
He can have some chemo, which he wants to try, but I'm not too happy. He could have this chemo it makes his ill and he loses some of the time he has. If it doesn't do anything this to me would be such a devastating thing you happen and they only think if it works thatbit could lengthen his prognosis by a few months. Its such a tough decision to make, it's so heartbreaking
Oh AliVau that is so sad to read. I am a long term survivor of throat cancer and I understand some of what your husband has been through. I have friends who have responded well to immunotherapy and friends who have not and have sadly died. It's a horrid situation to suffer so much to get well then to fall.
I have one friend who had chemo successfully for two years after he failed immunotherapy but his cancer was in his lungs and ribs. It's a decision that will be heard but in the long run it's your husbands to make. Maybe he could try it. He doesn't have to have the whole course if it makes him really ill. Some people react badly some not so.
You could come and say hello to us in the Head and Neck Cancer Group or chat to others in the same spot in the Supporting someone with incurable cancer forum
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I think the main problem now is the spread to the brain.
You've highlighted exactly why this decision is so hard. Have you sat down with his oncologist for a proper discussion about it? Turn it round, what would they do for their spouse? That sometimes elicits an honest response.
It's complicated. Perhaps your husband considers stopping treatment is giving up? It's not of course but..............
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
It sounds as if he wants to be with you as long as he can. Maybe there is a danger that if he stops he will go downhill very quickly. Cancer is so cruel to carers. I sometimes feel they have it worse than us patients. Maybe hold his hand and do it with him. It's his choice. Hugs.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
