An update on Zander's health situation for his friends and family

Zander in the garden at Western General Hospital today

As many of you may know already, Zander had been suffering from significant weight loss for up to a year leading up to the summer of 2014, and after a series of investigations, he has been diagnosed as having oesophageal cancer. He is still very well in himself: he has been focussing on his nutrition and has stopped losing weight, and he has almost no symptoms from the cancer. Nonetheless, it's a serious diagnosis which is likely to go on to cause health issues in the future. Rather than sending out lots of emails to update people on his progress, we've decided to use this blog as a record to document what's going on and to keep everyone updated.

Sometimes posts to this blog will be excessively detailed (such as today's one) so please don't feel obliged to read it all - it's helpful for us to have this as a reference but it is a bit over-wordy for general reading.

This first post is a detailed summary of everything to date: future posts will be shorter.

By the way, B is stable and settled in her care home, but she is not aware of what's happening with Z's health.

(By the way, this is written by Pete....)

If anyone wants to comment here, please do so - Z and others will be delighted to get your feedback.

OK - a detailed report follows:

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We had a  “definitive” meeting today with Dr Sorcha Campbell, the consultant oncologist at the Western General Hospital. She has been to all the Friday morning Multi Disciplinary Team meetings that have discussed Z’s case, but this was the first time we had met her. She’s a very pleasant Northern Irish woman in her mid thirties. She is the “person in charge” once the surgeons have been ruled out, so we are likely to get to know her well.

That said, today was the day when they drew together all the information, and summarised the diagnosis, treatment and prognosis. There will be no more investigations: we have reached the end point of finding out what’s going on and planning what’s going to happen.

Sorcha first asked questions about Z generally to get a full picture of what this has all been about.

How did it start?- weight loss, about  1 year ago

Z’s swallowing problem started about 6 months ago but has been and continues to be, very minor. He has no pain on swallowing, no vomiting or regurgitation

No sign of any bleeding orally or otherwise

He said that he “got stuck” on rhubarb once  - but it was a single episode. Generally he is able to eat normally.

She asked about “anything else” and Z mentioned deafness in both ears - he does not tend to use hearing aids, and can manage ok one on one, but is not so good in groups.

He has no heart problems

He has minor lung issues due to pipe smoking but no cough at the moment

He smokes smokes a tin a week of tobacco that’s about 50 grams (2 ounces)

He is not on any medication

He has no heart burn or reflux

Investigations

Endoscopy showed that there was a thickening at the base of Z’s oesophagus, just as it goes into his stomach. A biopsy confirmed that this was oesophageal adenocarcinoma, a type of cancer.

The PET scan showed that Z’s oesophageal tumour is  localised but there was an area of slight increased uptake in one of his parotid glands. It’s common to get independent benign tumours in this area and very rare to get metastases there, so this is almost certainly just incidental and nothing to worry about. So basically, there is no sign of any spread of the oesophageal cancer around his body, which is great news.

The endoscopic ultrasound that was done last week looked at the level of local invasion by the tumour. This showed that the tumour was not all the way through the wall of his oesophagus, and it has started to invade surrounding tissues, but not to any great degree – just one local lymph node is affected. It is quite large, measuring 4cm by 6cm.

So Z has oesophageal adenocarcinoma, staged as T3, N1, M0

(T = depth of tumour, from 1 – 4

N = degree of Lymph node invasion, from 0 – 3

M = Metastases (spread) – M0 = no spread, M1 would mean it had spread)

  

Treatment options for oesophageal adenocarcinoma

The most aggressive treatment would be chemotherapy followed by radical surgery. Surgery would be a massive undertaking and Z's general fitness is not great given his age etc. It would take a 40 year old a year to recover from it: a 79 year old might never recover from the trauma, so in his case,  it is not an option. 

Another option would be radiotherapy combined with chemotherapy but the drugs used ( cisplatin and 5FU) cause renal impairment, deafness, numbness of feet, nausea, mouth ulcers and tiredness. Again, at Z’s age, chemotherapy would not be a light undertaking, and the team reckoned that they would be more likely to kill him with it rather than prolong his life. So it is not an option.

So the remaining option is “curative radiotherapy”. This involves blasting the tumour with intense radiation. All living cells are damaged by radiation, but while normal healthy cells can repair and regenerate, cancer cells cannot. So if an area is zapped with radiation, the hope is that the cancer cells will all die, but the normal surrounding cells will recover. The process means that there is short term damage to normal tissue which can be uncomfortable, but once a patient recovers, they are left with a cancer which is much smaller ( or even vanished altogether)

Photodynamic therapy using endoscope is not appropriate for Z’s cancer  - the tumour is  too deep for the light to reach it.

Curative radiotherapy for Zander

The treatment is known as 3D conformal external beam radiotherapy.

The process starts with a planning scan which takes 20 mins. This is a CT scan that's fused with the PET scan and other tests that have already been done. They basically survey the area they want to treat, and make a plan.

This will be done on Tuesday or Wednesday 21^st  / 22^nd October

Z then goes back for a second planning scan on Wednesday 29th October.

The radiotherapy then will start on Monday 3^th November

Z will then have one treatment a day, Mon to Fri, for 4 weeks

So it will finish on Friday 28^th November

Each day,he will  lie flat on a bed, with his arms above his head for 15 to 20 mins

He won't see anything or feel anything so it feels like a normal diagnostic scan.

He will talk to clinician once a week, usually on a Tuesday, before or after the treatment

He can drive there and back but will be tired after 3rd or 4th week so may need to get a taxi. He can get hospital transport but more complicated and there would be lots of waiting around.

Side effects of radiotherapy

The side effects are delayed, building up over the 4 week period of treatment,

and continuing for 4 – 6 weeks afterwards i.e from mid-November up to early January

Basically, he gets a radiation dose to the lungs, liver and bowel and that’s why there are side effects.

He might feel nauseated, and he can get anti sickness medication- he just needs to let them know that it’s happening

The treatment will also make his oesophagus temporarily inflamed and sore and this will build up over the weeks. He will get treatment for this – they sometimes use Oxetcaine which is a liquid containing  local anaesthetic and morphine – it numbs the area and relieves the pain locally and systemically but it’s only used if needed. Eating is made easier by prescribing special supplements and liquids but around 10% of people can’t manage to swallow anything at all, and in these cases, they need to use a nasogastric tube (a fine plastic tube that goes into your nose and down to your stomach)

He will need lots of soup, custards, rice pudding, double cream to add to everything.

Also, 4 - 6 weeks after the radiotherapy finishes, 5% of people get pneumonitis – so if Z gets a cough that’s getting worse, he needs to tell them and they will treat it.

Additionally, 3 - 6 months later, around  one in three patients get some lung scarring, and their breathing may get a bit worse, but very few are seriously impaired by it.

Prognosis

It’s important to realise that the view of cancer expectations has changed in the past 15 years. These days, there is less talk of “curing” cancer, and more talk of “living with cancer” i.e. it never goes away completely. Many people die of other things, as they would if they didn’t have cancer.

So if Zander did not have this cancer, on average, tables of typical lifespans show that he would be expected to live for another 8 years on average. The blunt truth is that the cancer means that he is not likely to reach this average but the cancer may not be the cause of his demise. He may die “with” the cancer rather than “from” the cancer.

That said, although the therapy is called “curative radiotherapy”, the likelihood of completely curing the cancer is very low, but it will definitely prolong his life.

Predictions are difficult to make, and can be dangerous in that some people live for as long as they are told they are going to live – the mind can have a powerful effect on the body.

For the record, here are the blunt statistics for his type of cancer:

Survival without treatment would be 6 - 12 months on average

A less intensive 2 week course of radiotherapy would have fewer side effects but would only prolong his life for up to 2 years on average

The intensive 4 week course of radiotjherapy is likely to give him longer than this, and 5% of patients with adenocarcinoma will be alive at 5 years. While this can sound gloomy (only 1 in 20), the staff said that Zander is exceptionally well at this stage of his disease,  so there is a high chance that he could be one of these “1 in 20”.

This is a one off treatment – he will not get this again because other structures in areas such as the spinal cord are very easily damaged by too much radiation, and if it was done again, it could cause paralysis

Later treatment

Although Z will not be able to have any more treatment aimed at curing the cancer, he will have palliative treatment as needed (this is treatment to ease the bad symptoms of the cancer, as they happen).

E.g. if he develops difficulty swallowing (e.g. in a year), he could have a stent inserted into his oesophagus via an endoscope. A stent is a hollow tube which is pushed in over the area of tumour – it’s purely a method of maintaining swallowing by widening the oesophagus.

What will happen eventually?

If the cancer does cause increasing problems, there are various possible outcomes, and it’s impossible to predict.

Sometimes people have more problems with swallowing

Sometimes people suffer more weight loss, get more fatigued and frailer (as tends to happen anyway to people in their 80’s, but obviously exacerbated)

Sometimes the cancer can spread - metastases happen in over half of patients at some stage. Most often the cancer spreads to:

• bones – causing  pain in bones
• liver – causing discomfort and nausea
• brain – causing  headaches, altered speech, altered vision

Any signs like these will be treated as they appear (but they may not happen at all).

Z was surprised to be told today that he might have as little as 2 - 3 years left - he had expected 10 more years even up until told this today so this is taking some adjustment

Alternative treatments

The doctors say that there is no good evidence for Vit B17, or special diets but there is no harm in trying these things

Supplements like Aloe Vera can be given too

But as far as the conventional doctors are concerned, maintaining weight is the most important target

The greatest indicator for doing badly is "carrying on losing weight"

Small meals, often, are the most important thing

Exercise - whatever he can manage. 

Monitoring progress

They might repeat endoscope and MRI scan 3 months after end of treatment to see how much the cancer has shrunk, but it’s up to the patient - some people decline this because does it not change the outcome and so is a bit irrelevant.

  

People helping Z

Daughter-in-law Nadia and grandson James have arrived from Russia, and Nadia has instantly stepped into a housekeeping/cooking role, which is great. They have the option of moving to a flat in Atholl Terrace from 22^nd October, but they may end up staying much of the time at Lennox St. The medical team said that it would definitely be best for Z to have live-in help for the period up till early January because he will be tired, weak and a bit sick, and he will need plenty of feeding up.

Nadia would like to be free on Wednesday and Sunday evenings when possible, so if others are visiting (such as Sue etc) then if they could aim to include these evenings, that would work really well.

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