Discharged from Sarcoma Service

We went up to UCH yesterday and saw the wonderful Dr Shui from the Sarcoma team, and I was formally discharged from his care.

Following the biopsy last Wednesday, Dr Shui had called us on Friday evening to let us know that histology showed the tumour was not a sarcoma, and therefore he was not the appropriate doctor for me. He could have just discharged me back to Basildon, or to the GP, but he went out of his way to refer me internally to the lung cancer team at UCH, making sure he'd spoken to one of their team about me, and ensuring they had my notes for their MDT meeting on Monday lunchtime. He even managed to set up a preliminary appointment with one of the registrars on Monday afternoon. I will always be grateful to him for giving a level of service and care that I just didn't expect from the NHS.

One of many jobs I held in NHS management was as the Head of the commissioning team for Acute Services, for the residents of Barking and Havering. I learned a lot about hospital services all across Essex as part of that role. As a result, I have a mental list of hospitals I will NEVER willingly be treated in. This list includes Southend Hospital, but not Basildon.

However, it turns out that the Lung Cancer service in Basildon is not a full service. It seems to be limited to diagnosis and out patient appointments. All chemotherapy and radiotherapy is done at Southend. Southend is the kind of place beset by low morale which causes multiple minor frustrations and annoyances. As well, the parking is difficult at best and the public transport links appalling. Although I've no evidence that, in general, the clinical care is any worse than anywhere else, still I wouldn't want to place my life in their hands.


Lung Cancer Treatment: Basildon and UCH Compared
There are 2 main categories of Lung Cancer: small cell and non-small-cell lung cancer (NSCLC). For NSCLC, there a 4 stages of cancer, stage 1 being early in the disease when the cancer is small and localised, and stage 4 being later, after the cancer has metastasized and spread. Both categories should be treated as aggressively as possible, given the general health of the patient.

The following is extracted fom the National Lung Cancer Audit Report 2011

	Average*	Basildon	UCH
% of NSCLC having surgery	13.7	10.8	19.6
% of PSO-1 Stage 3B or 4 NSCLC having chemo	52.8	51.1	64.4
% small cell receiving chemo	65.1	44.4	94.7
% of NSCLC Stage 1 & 2 having surgery	48.8	53.6	72.2
% histologically confirmed NSCLC having surgery	18.3	13.8	21.6

         [Link to PDF]                                         * England & Wales n=32,347 cases first seen 2010 

Clearly, I'd be much better off at UCH and thanks to Dr Shui, UCH will continue to treat me. Before discharging me, Dr Shui explained the results of the tests he had had back: I don't have sarcomatoid cancer, nor do I have a germ cell tumour. There's no indication of, for example, bowel cells in the lung tumour which would indicate it was a secondary cancer. It is a cancer though, and a big one. He showed us the chest X-ray and the CT scans, and the mass seems to fill about a third to a half of my right lung. He said the interesting thing was that I was so well, given that I have such a large mass inside me.

The same afternoon I saw Dr Judy King, Darzi Fellow Medical Oncologist. She was  very approachable and helpful and explained the next stages. At the end of the consultation, we met the head of the Oncology Department, Professor Lee who was a very nice man and clearly one of the leading clinicians in the country in this field. He said he wanted "light the tumour up in a PET scan". So that's now scheduled for Wednesday at 9.00am.
With the PET scan results, and final histology reports, I'm hoping for a diagnosis at the next outpatient appointment on the 21st May, when we'll get an opinion as to whether surgery is an option.