Apologies in advance for a long post. My husband was diagnosed with tongue cancer in July 18. Part of the tongue was removed but found to have spread. He then had a neck dissection in Dec 18 followed by radiotherapy in Jan 19. He has had follow ups every 8 weeks which were all ok until covid but no scans. In May this year completely out of the blue and only 8 weeks after we got married he was struggling to breath. Investigations found he had a pleural effusion and a subsequent biopsy confirmed SCC of the pleural lining. A catheter has been put into the lining for me to do the drains at home. Only 2 weeks into that the drain isn't working properly and today we discovered there are now pockets in the pleura preventing drainage. The MDT this week decided that the spread from neck to chest is so rare that now we're waiting a PET scan to confirm it hasn't come from another primary. I understand why they're doing this and the need to confirm findings but he is deteriorating every day. He's in so much pain despite lots of morphine and other painkillers. I am so scared that he won't make it before we get a chance to do any treatment. Would they know? Can they tell from what they've already seen? We seem to have gone overnight from trying to rebook our cancelled honeymoon to wondering if he'll get there at all. I'm really struggling to deal with this and am trying to stay strong for my teenage son. I'm sorry for such a long depressing post.
Tina I’m so sorry this has happened to you both. Don’t apologise for your post, you obviously need help and now. Do you have a clinical nurse assigned to you?
I would contact them straight away to see what can be done immediately for your husband. He shouldn’t be left in dire straits like he has but maybe the hospital doesn’t know how quickly he has deteriorated, so let them know.
I can’t comment on the clinical aspect but it looks like the clinicians need more information before they can offer any treatment.
There have been some remarkable results with immunotherapy so keep your hopes up and good luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Sorry to be reading this post Tina, I'm afraid I don't know anything about this cancer and why it has come back so quickly as normally it's slow-growing. Thinking of you both at this difficult time i just wish i could offer more positive advice. Sending hugs to you both, take care.
Chris x
Its sometimes not easy but its worth it !
