Thursday, August 27, 2015

Unexpected signs of malignancy

Chapter 1
Bedside manner is an interesting thing. How should a doctor tell you things about yourself? How should you pass on information to friends? How should I write this blog post?
My doctor told me something on Thursday 16th July 2015, and I'm going to write about it here. I noticed that my doctor told me in a slightly oblique way, flying past the central topic a few times, using slightly technical language, and emphasising how unexpected the information was. Somehow, this emphasis on the unexpectedness of the information made it comfortable to absorb.
Here's why I was visiting the doctor: I'd been to see him two weeks before, because I was feeling unreasonably exhausted - even walking up one flight of stairs was difficult; he had done a blood test, found that I had anaemia, and had referred me to the hospital for an endoscopy, which I'd had on the 9th of July. (Looking at the stomach was motivated by a history of stomach pain over the past couple of years.) The endoscopy doctor had told me, on the day of the endoscopy, that I had a stomach ulcer. The Thursday-16th-July meeting was for me to hear more about the results of the endoscopy.
My doctor got straight to the point: tests had been done on biopsies from my endoscopy; the letter from the hospital said the ulcer showed signs of malignancy, most unexpectedly.
"Malignant adenocarcinoma", he said.
That's a cancer of the glandular tissue, he said.
"So you need to go for a CT-scan tomorrow, to get more information. There's no reason to think it has spread at all. And in the absence of information about the grade (histology) and the stage (degree of spread) it's hard to say what treatment will be recommended; but almost certainly stomach surgery will be involved, soon. I need to take blood today for a kidney-function check before the CT-scan. Then next week after the CT scan, a multidisciplinary team will meet to discuss all the results and make a plan."
He also said "you could drive yourself crazy reading about this on the internet"; he encouraged me not to do that, but to wait to hear what the hospital team said.
So that was it. Unexpectedly off to hospital for an unexpected CT scan (cool!) to investigate an unexpected cancer on a mildly surprising stomach ulcer.
Many friends to whom I have told my news in the last month have said "you must be devastated"; but I didn't feel devastated. I just felt "ok, that's the way things are"; I started adjusting my plans to take into account the new information. Friday's trip to London had to be cancelled. Which Summer holiday plans would we need to change? Which engagements might I need to cancel? Should I stop trying to raise research funds to build up a new research group?
I found Ramesh in the village hall and we walked home together, pushing Eriska in her pushchair.
I did a little bit of reading on the NHS website about adenocarcinoma of the stomach. The probability of surviving stomach cancer is not great, as this Tufte graphic makes clear.
"But hey, if only 20% survive 5 years, I aim to be in that 20%", I figured.
Naively I thought "almost certainly stomach surgery will be involved" implied I should be planning for a couple of days in hospital some time in August. A friendly doctor disabused me of this notion however - the normal treatment for early-stage stomach cancer is surgery to remove some or all of the stomach and all nearby lymph nodes, and it typically takes at least a 10-day stay in hospital until the digestive system recovers sufficiently from this insult to work at all; during those 10 days, you are fed through your vein and a vacuum tube is put down your nose to ensure that nothing gets beyond the oesophagus. Hmm, that doesn't sound fun.
I found an internet discussion group for people who've had stomach surgery for cancer treatment. Lots of positivity about the eventual return to near-normality.

Chapter 2 Off I went for the CT scan. What a wonderful Siemens machine! A whizzing circle. And a nice clinical scientist who set up the injections and told me that as it went in it would feel as if I had wet myself, but don't worry, you won't have. (She was right.)
On Wednesday 22nd July I met some members of my multidisciplinary team. They said that the CT scan had not resolved the degree of spread; it looked like several lymph nodes near the stomach might be cancerous, and perhaps one lymph node near the aorta; and there might be something in the liver but probably not; so they wanted to do more scans and a laparoscopy to pin the situation down. An MRI scan of the liver, to check that there was nothing there. A PET-CT scan of the chest to investigate the lymph node near the aorta - this would require special finance-paperwork because it is a non-standard test. And a laparoscopy, which means inflating the abdomen with CO2 and putting a camera in for a look around, under general anaesthetic. These things would probably take two weeks to complete, because the scanners are in demand.
After these investigations, the team would then recommend one of two courses of action: either
1. treat stomach cancer with chemotherapy and surgery from mid-august (start of chemo) to roughly november 17 (surgery) followed perhaps by more chemo; all with the intention of cure. The surgery would remove some or all of the stomach (and based on what I'd read, and the location of my ulcer, I reckoned probably 'all' was the right thing to expect)
or
2. just chemotherapy, no surgery; with the intention to improve/extend quality of life but not to cure. [don’t bother with surgery because too much spread].
So the one fairly certain thing seemed to be that I would be in for chemotherapy fairly soon.
After meeting the gastric consultant and nurse specialist, I met a dietician, then the dashing surgeon who was going to do my laparoscopy and (under plan 1 above) my stomach surgery.
His bedside manner was very direct. After the laparoscopy, he said, we will know whether it is good news or "doom and gloom". And in the good news scenario, he would remove my stomach. Yes, the whole thing. He wasn't bothered with hedging about any possibility of removing just part of it.

Chapter 3
We nipped away for a brief holiday. The scheduling of the two scans and the laparoscopy was chaotic but in the end all three took place very neatly on Monday 3rd and Tuesday 4th August. And as I came round from the general anaesthetic on the Tuesday afternoon, the dashing surgeon came in with a bundle of photos he'd taken and with his direct bedside manner.
"You remember I said the results could be anything between good news and doom and gloom? Well, I'm afraid it's doom and gloom."
There are secondaries all over the peritoneum. He showed me two of the pictures, which showed a thin white layer of tissue covering much of the diaphragm. He said he reckoned that without chemotherapy I might have roughly 12 months to go, and the chemotherapy might extend things by 6 months or so, but was unlikely to make me last more than 24 months.
My main reaction was "hurray! I get to keep my stomach!"

Chapter 4
At this point I started telling more friends and colleagues the situation. I emphasized "I am feeling fine and enjoying eating well in order to build strength." Ramesh and I both felt determined to have some fun. On 5th August I wrote "There is still an option of having palliative chemotherapy, but I am not sure whether that will be a good choice, since it would eat into weeks or months of valuable time now in exchange for perhaps just a few months of extra time later; I’ll talk to oncology specialists at Addenbrookes today and see how they see the pros and cons." One of my main reasons for hesitating was my perception that I was feeling fine right then, and August and September seemed a fantastic opportunity for having some fun. Chemotherapy would spoil that opportunity. Was it worth it? Could I delay the chemotherapy a few weeks?
I met my gastric consultant again, and met the head of chemotherapy at Addenbrookes, who confirmed the surgeon's rough estimates about life-expectancy. He recommended that I take the chemotherapy immediately, even though the median extension of life by chemotherapy was only about two months; I asked about the loss of quality of life during the chemotherapy; he said the loss of quality was "only 20% or so", and that the expected return (in terms of the area under the quality-of-life curve) was greater.
What about the PET-CT scan and the MRI scan? The MRI scan had shown nothing in the liver. And the PET scan didn't show anything - apparently my cancer doesn't show up at all. And they said that it hardly showed up under the original CT scan either.
I agreed to their recommendation of "EOX" chemotherapy. I had one week of rest to recover from the laparoscopy (which left the tummy surprisingly sore for several days), then the following Thursday I was back in the hospital for...

Chapter 5 - the biggest red syringe I've ever seen
It looked like something out of an Austin Powers comedy. The nurse kindly squeezed it in. Then put me on the drip to put in the second cytotoxin. Then two hours later sent me home with my huge bag full of pills.

Oh, before I tell you about the chemo, I should insert a little addendum to Chapter 4.

Chapter 4b - the last minute hesitation
It wasn't "denial" or wishful thinking, but in the final day before starting chemotherapy I found myself really concerned about the possibility that the whole thing was a big false positive. After all, they had told me that the CT scan showed very little, the PET scan showed nothing, and the MRI scan showed nothing. The only 'positive' evidence we had to go on was a histologist's report from the gastroscopy saying "malignant adenocarcinoma" and the photos and expert judgement of the surgeon that what he saw was definitely secondaries all over the peritoneum. But what if I have an unusual-looking peritoneum? And could the histology results have been mixed up somehow? A bad histologist? Specimens mixed up? It would be stomach-churningly terrible to undergo chemotherapy if in fact I didn't have cancer! I hadn't seen any data with my own eyes that really convinced me. I was only agreeing to treatment because I trusted the NHS staff. But I really wanted to feel more convinced myself. (My head of department had just told me a few days before about a friend of his who had a misdiagnosis of cancer.) Thankfully a friendly doctor suggested what to do - certainly, he said, samples would have been taken from the laparoscopy too, and they should have been tested by now; I could ask about the histology results. So I did that, and was told that those biopsies were indeed cancerous too. As I said, I wasn't in denial. It's just that to believe things you need either data that you understand or you need complete trust. I still wish I had seen more of the raw data with my own eyes. I like data. Anyway, with both the independent histology findings, I was happy to go ahead.

Chapter 6 - Chemotherapy - it's not nice, but I think I shouldn't complain. It's much worse for some people. Here is a probably-too-detailed account of Side-effects and other recent history.
1. During my first (EO) infusion I had no side-effects for the first 90 minutes, but during the final 30 minutes or so, I had cramps in my infusion arm, and weird sensations in the out-facing surface of that arm (see point 4 below).
2. Some of the infusion arm’s veins were painful and I still noticed slight vein pains (if I looked for them) on day 13.
3. I experienced some of the predicted (neuropathy) side-effects: my fingertips had sharp pins and needles sensations, especially in cold situations; this lasted a few days; my feet also had cold-induced pins and needles, for two days. My tongue was very cold-sensitive for the first couple of days and remained somewhat cold-sensitive (feeling like a puffy sock) for about 5 days. After 7 days the tongue returned to normal.
4. I don’t know if it is part of the neuropathy syndrome, but my infusion arm’s out-facing surface remained strange for about 7 days. During the first 4 days the skin and hairs were very sensitive to the touch; it felt like being stroked with a cheese grater - all over the arm, and especially the hand. By day 7, this cheese grater sensation was mainly confined to the back of the hand.
5. I didn’t have strong feelings of nausea.
6. I took steroids for 2 days as instructed. My stomach had some ups and downs which were eased along by senna and lactulose.
7. My mood became quite dark on days 1-3, then I perked up again by day 5 onwards.
8. I feel tired a lot of the time, and spend lots of time snoozing and sleeping.
9. I got a sore throat on day 11 (Sunday 23rd) and then sore throat and cough on day 12; the oncology clinic instructed me to get antibiotics from my GP and to suspend taking the "X" (capecitabine) for a couple of days while I get over the cold. This cold reached its worst on Wednesday 27th, and now (early hours of Friday) I think I am getting over it. (Increased vulnerability to infections is one of the expected side-effects of the chemo.)

How I felt about the side-effects.
I didn’t enjoy the pins and needles feeling, but if it always were to go away after 5 days, that would be ok. However, the medics have indicated that the neuropathy is expected to worsen over subsequent cycles. So I am going to talk to my doctors about switching to a less-neuropathic alternative to oxaliplatin at the next cycle this Thursday coming. The down-sides of the alternative are “longer infusion, more chance of nausea”.

Chapter 7 - What's next
There are probably going to be eight cycles of chemotherapy. Each cycle lasts three weeks, starting with a Thursday infusion, followed by 21 days of pill-taking. Eight threes is twenty-four, which is roughly six months. Given how I've felt during the first 14 days, I expect I will feel fairly tired for much of the next six months, and I'll probably spend most of it at home or near home. So the having-fun plan is focussed in the Cambridge area for the near future, with aspirations to do some having-fun further afield [perhaps on a Scottish island or two] about February, March, or April.
I'm still feeling fine, and as I shake off the cold I am beginning to feel really perky again. I've got a great appetite. My time spent snoozing is happy time, usually accompanied by radio 4 comedies. I'm spending a lot of time listening to music and transferring music from CDs to my computer and my smartphone, so that I can have favourite music wherever I am.
The biggest weight on our minds is the question how to prepare for helping our children (aged 4 and 1) through whatever the next year or three throw up.
Here we are... we are all happy!

I'll add another blog post here at itila.blogspot.co.uk every three weeks or so, to keep you updated.
Thank you to our dear friends and relations for your support!

6 comments:

Steven said...

Your advice (Be "quite explicit that conventional wisdom is wrong. ... 1. Discuss a simple public goods game.") got us into Nature. Thanks a million.
Best wishes, -steve

Nigel Goddard said...

David, I'm very, very sorry to read this. I notice you mention having fun on a Scottish Island or two. I can recommend the west coast of Harris, beautiful, wild, great beaches, good walking, having recently visited. Places to stay range from luxurious to as simple as possible. And if you want a place to stay in Edinburgh, Johanna and I have plenty of room for all of you.

Best wishes as you go through this difficult time.

Nigel

@cwhope said...

David,

I'm glad to see that you have not lost your wonderful commitment to honesty, transparency and clear explanation.

You are probably inundated with well-intentioned advice right now, but if you can bear one more bit, I've recently read and been impressed by Atul Gawande's 'Being Mortal' http://atulgawande.com/book/being-mortal/

With all best wishes

Chris
@cwhope

area said...

Just stumbled across this news, and I am very sad to hear it. Not really sure how to respond other than to let you know that, during my nine years at Cambridge, your Classical Information Theory course was the best of the great number that I had the pleasure of taking. I am sure I am not alone in this sentiment.

All the best,

One of your many students

Mark M. Wilde said...

I have always considered you to be a great scientist and to have a wonderful personality. I know this only by having read your book on information and coding theory when first learning the subject, a text which has inspired many to study the topic. I found it very inspiring that you made your book publicly available on the internet. (It inspired me to do the same, in fact). I also gained further respect for you after you became active in a government role for the climate debate in the UK. Enjoy every day of your wonderful life and glad to read that you keep your music by your side!

Huiyi Chen said...

I have occasionally watched the TED talk video from Youtube about renewable energy from you. It was really a great piece of work so I found you on internet. However, I am really sorry to hear that you passed away last year. I sincerely wish you will be happy and rest in peace in heaven and your family and kids a bright and encouraging future... Thank you for your nice work in the academia world, David. I feel encouraged by your research.