Cautious Optimism

After another X-Ray, I saw Mr David Lawrence, the cardiothoracic surgeon, on Monday 9th July 2012 at the Heart Hospital.

Mr David Lawrence BSc(Hons) MBBS FRCS FRCS MS

Broadly speaking, it's good news. The tumour was removed intact (given it measured 7.5 by 5.25 inches at one point, that was no mean feat!) and has since had a through going over by the histopathologists. It seems that it was completely encapsulated, and had not invaded any parts of me. For thymomas, there are several types and stages:  type A is completely benign, and type C is malignant, fast growing and metatasizes. B1, B2 and B3 are in between and have malignant potential. Mine was a B2, on the cusp of malignancy but since it was fully encapsulated, it hadn't invaded any other tissue of organs. What a relief.

Cautious optimism though: there are still causes for concern: little Ridley had a healthy blood supply (which was why he hadn't felt the need to break out of the capsule and feed off me) provided by 2 pedicles. These were snipped and clipped during surgery. There are tumour cells at the incision site on the tumour, therefore probably also on my side. These can re-grow into new tumours. Even with the total resection of a thymoma, which I have just had, there is still a significant chance of recurrence.

There is no agreed clinical protocol on how to manage this situation because thymomas are rare and varied, and cancer management techniques are evolving very quickly so there's no point in looking at statistics from 20 years ago. Mr Lawrence seemed to think that a watch and wait approach was best, rather than subject me to any radio or chemotherapy: that is supported by the most recent research, which suggests that complete resection is the gold standard of treatment for a B2 thymoma, and that adjuvant therapy probably has no impact on the outcome where there is no invasion of neighbouring tissue. [1]

However, that's general guidance.  As a thoracic surgeon, he doesn't think he needs to refer me on to an oncologist, he will discuss the specifics of my case with the UCLH oncolgist Dr Dawn Carnell who has a special interest in thymomas and decide how to proceed after that.

The other cause for concern is that while the medics were working out what was wrong, I had a biopsy. A needle biopsy of a thymoma can "seed" a new tumour in the mediastinum, often near the biopsy site. Still, the biopsy seemed to be the best decision at the time, in order to reach a definitive diagnosis after so many false leads. If I keep having scans, any new tumour will hopefully be picked up nice and early and dealt with promptly.

So we're not out of the woods yet, but we can see the open fields: and although the next bit of the path might meander a bit, there's a lot more metaphorical sunlight sparkling in the air now than there was a few weeks ago. Sadly, no actual sunlight, just variations on the drizzle/downpour spectrum, but you can't have everything.

Next step: see what Dr Carnell says about usefulness of adjuvant therapy or otherwise, then probably another CT scan and appointment in 3 months.

1."Which stages of thymoma benefit from adjuvant chemotherapy post-thymectomy?" Attaran S. et al.  http://icvts.oxfordjournals.org/content/early/2012/05/01/icvts.ivs133.full

Slowly Improving

The nature of slow improvement is that it's slow. Although the first few days were actually thrilling: the progress from being able to walk to the corner 50 yards from our front door, to walking half way along the side road, to walking to the next junction was tremendous to achieve, but perhaps less exciting to read about. Since then I have advanced to walking around the block and to the local shops and back. For the first 2 weeks post surgery these minor milestones were a delight to both of us. Equally, for the first fortnight my pain was reducing and my strength increasing, so that I could sleep, and cook (although dishing up was still a problem), and shower, and just do things around the house with ever increasing ease.

I've already been accused by an esteemed member of the legal profession of using this blog just to get my kit off for the internet community,  while pretending that it's in the interests of medical science. I'm not about to name names, but shame on you, Pete. Still, here I go again: my external wounds are healing really well and now look like this:

Healing on the outside

More recently the recovery process has slowed a little, which is to be expected. But it chafes at me. I realise just how competitive I am, how I'm judging myself by my achievements. It's very silly, very childish.

I've been getting more pain in the last few days, too. I'd been given codeine and paracetamol tablets, but had stopped taking the codeine because I can be quite an addictive personality, and I worried about using too many. The paracetamol alone isn't enough though, I haven't been sleeping well. At night, my shoulders, back, and neck ache, and it feels like the bones of my ribs are pressing against each other. I can't find a comfortable position in bed, and moving around without using my arms is hard work. I got on the internet, and it was very hard to find out anything about "normal" pain management post sternotomy, just loads of scary stuff about chronic pain. However I did manage to find some personal accounts by people saying how they were pain free a week or so after surgery, which then made me feel like a malingerer.

Today I saw my GP, who was very kind and supportive. He reminded me that although I was healing on the outside, it's going to take a lot longer for the bones to knit back together. He asked about the various pains I was getting and even supplied me with descriptive words - is it a burning pain, does it feel like the ends of the bones are grating on each other - yes! yes! He's given me a prescription for co-codamol and reassured me about addiction. Apparently what is happening is that my nerves are recovering from the surgery and that is causing more sensation and more pain. I need extra pain management, not less. It's all normal and OK.

Tile House Surgery

Interestingly the GP also implied that people who claim to be pain free a week after thoracic surgery have something wrong with them, psychologically. There seems to be some kind of phenomenon going around whereby people deny the reality of their pain because they are so desperate to recover from things like this: analogous I suppose to women who are frantic to get back into their pre-pregnancy shape within days of giving birth.

It's easy to dismiss this idea as relating to a few oddballs with issues about their own mortality. I wonder though whether it isn't something that goes a bit deeper. There's huge pressure on all of us now to be fitter, younger looking, healthier, slimmer, happier, wealthier, and just generally more Californian than ever before. We're all bombarded with messages about eating our 5 a day, not smoking, taking vitamin pills, drinking just enough alcohol but never ever too much, wearing safety helmets and high-viz jackets on bicycles, taking enough exercise but not over doing it, getting out into the country not for the simple joy of it but for the sake of our mental welfare: the nagging to be healthy never ends. Most of all, we must avoid danger like the plague. And as danger is everywhere, we must also be wary, and fearful, all the time.

As a result of all that scolding, is it any wonder that some of us silently criticise others for failing to achieve health perfection.You've only got yourself to blame, we think about people who fall off motor bikes, or put on weight, or get depressed, or hit the bottle, or get heart disease. If only you weren't so uptight/lazy/greedy/undisciplined/obsessed/fallible. Then it's only a tiny leap to, why should the state pay for him when.....

I wonder whether as a society we're on the cusp of a declaring illness to be a vice.

We are seeing the surgeon on Monday 9th July, hopefully then we will get some information about the tumour, what type it was and what stage, and whether there's a need for further treatment, chemo or radiotherapy.