The bits below in bold italics are the answers I received at my appointment.
The stand-in doctor who I was seeing had consulted with one of the professors to provide answers to my question 3.
Dear docs,
Appointment 20th October: issues I want to discuss
My lungs are feeling even fitter than they were a year ago as a result of daily 5-mile walks, pain is very limited, 3/4 of my body (i.e. all but my top right quarter) feels 100% fit, and I still get a lot of joy out of life.
So, I think it's unsurprising that my mind is having to contend with thoughts "Is there any possibility that this could have been misdiagnosed as a high grade cancer?" There is no way that these thoughts are raising any hopes on my part, but they are raising anxieties at the scenario that a post-mortem might show that I have something which could have been treated if it had been correctly diagnosed, and how awful that would be for the children, how much harder it would make it for them to cope with my death.
To allay these anxieties I need to be made 100% confident that there is absolutely no possibility that there could have been a misdiagnosis. Being the person I am, fudging or evasive answers will irritate me. Hence my advance notification of the questions which I am going to ask you.
1. What percentage of patients with an anterior mediastinal mass which has been diagnosed as a high-grade cancer, have my level of fitness when the mass is nearly 10 cm at its widest point?
(See 2 below)
2. What percentage of patients with lung cancer, have my level of fitness 11 months after diagnosis?
I asked for a very rough idea - 10%, 1%, .1%? The doctor I saw gave a sort of lumped-together answer on that basis to 1 & 2 of 10%. A GP friend reckons closer to 1% than 10% for 2.
3. What are the features of my cancer which demonstrate beyond any shadow of a doubt that it's a high-grade cancer (as opposed to, most particularly, a germ cell tumour)?
They always look for germ cell tumours - plus chemo I was given would have treated germ cell.
In order to answer this question to my satisfaction, the table below sets out all the features of the mass which are noted in the biopsy report. For each feature, I want to know whether it is only found with a high-grade cancer, or whether there are other possibilities. If it's the combination of particular features which together make the diagnosis incontestible, I want to know what this combination is.
I am most emphatically not requesting another biopsy - I understood from the consultant at the time of the biopsy that he had a good sample, and my GP confirms that she would consider a 16mm core of tissue to be a good sample.
| Feature | Found in high-grade cancers only? | Comments |
| Tissue beige in colour | N | |
| Tissue is fibrous and connective | N | |
| Within the tissue there is a high-grade carcinoma | What is it about the tissue which makes this certain? - level of abnormality | |
| Some necrosis | sign | |
| Cells show scattered mitotic figures | N | cells dividing - would be lots if rampaging |
| Cells show scanty cytoplasm | ? | ? |
| Cells show nuclear hyperchromasia | Nuclei look different | |
| Immunohistochemistry shows broad cytokeratin reactivity | Shows not lymphoma or sarcoma | |
| Immunonohistochemistry shows negative staining with CD56 | Stains associated with lung cancer - only low proportion are negative | |
| Immunonohistochemistry shows negative staining with TTF-1 | ||
| Mucin stains negative | ||
| Features judged to be those of a high grade non-small cell/large cell carcinoma | Is there anything else these features could point to? Specialist who did the biopsy report, and is well respected, was "fairly sure" it was lung cancer - "A feeling from him" | |
| Neuroendocrine marker negative | ? |
At the appointment, the doctor I saw acknowledged that the cancer was growing much more slowly than anticipated, and that there had been some doubts at the biopsy as to whether it was indisputably a high-grade, or completely high-grade, cancer. She said they would be discussing my case at the MDT.
There is no need at all for us to spend any time talking about radiotherapy - this has been thoroughly discussed by email with the consultant, and, given that radiotherapy would not be expected to increase my life expectancy and that my quality of life remains high, I can see no possible reason for considering it at this stage.
There's also no need at all for us to talk about analgesics or side-effects such as bowels, since I feel very satisfied with current management and that my rapport with my GP is excellent.
I am assuming I will be having an X-ray on Thursday and would feel dissatisfied if not!
Please note that my problem with sitting for any length of time is serious and that I will need to be able to lie down somewhere if I'm kept waiting more than a few minutes. The floor is fine but this is contentious with the nurses and would require your authorisation.
Best wishes, Jos