My fit 60 yr old husband was diagnosed with lung cancer last July when he attended a rheumatology appointment due to chronic pain in his wrists, feet and ankles and they did a routine chest x-ray. He then had CT, PET scans and a mediastinoscopy, followed by surgery (not VATS) for an adenocarcinoma, plus there was an unexpected large second tumour discovered, that was attached to his main artery so instead of a re-section, he had his full left lung removed at the beginning of September. His cancer was staged at 3b and he was told there were infected lymph nodes which may have spread.
Less than 3 weeks later he had his follow up appointment and was discharged and told he had been referred to Oncology for chemo. The surgeon gave him a review appointment for 12 months ahead.
When we attended the Oncology appointment the consultant suggested he have 4 cycles of chemo but outlined and heavily emphasised the potential harmful side effects of the drugs including the fatality rate, without actually making a statement she made it clear that she thought we should reserve chemo in case it was needed at a later date as it could not "cure" only slow down cancer and would not be effective twice?
As a result my husband made his decision not to have the treatment and he was apparently discharged from Oncology. We only found this out from our GP later.
Since then he has suffered terribly with a non-stop chronic cough, been given antibiotics several times for and even hospitalised overnight once for chest infections. He has been back and forward to our GP who finally referred him for x-rays which came back "normal". At my husband’s insistence because the GP was going to do nothing further, he has now been referred to ENT to try and identify the cause of the loud barking cough.
The one time he called the MacMillan nurse, that we have never met, he felt she was abrupt and now won’t call her again. Mentally he is very down as he is constantly wondering if the cancer has spread. He is struggling at times with one lung and though he has found the drive to return to work. I just don't know how he copes as he is an engineer and the environment can be challenging due to fumes etc. He is extremely tired and sleeps 80% of the time he is at home.
What I don't understand is how my husband is not receiving more frequent follow up appointments even if just to give him reassurance? Has this been anyone elses experience?
I am a very recent joiner but the posts I have read suggest you all seem to be seeing someone on a regular basis? Does anyone know how we can get the reassurance that if the cancer is spread it will get picked up due to regular reviews?