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Oesophageal cancer: prognosis

Yesterday I left you with the news that I had been diagnosed with oesophageal cancer. The most pressing questions at that point are:

  1. how bad is it? and
  2. can it be treated or even cured?

Answering the first question is called staging. In my case the initial test was a CT scan to determine whether the cancer had spread, and if so, how far. I had the CT scan scheduled eight days later, and an appointment the following morning for an endoscopic ultrasound examination. The two tests combined were to give 95% confidence levels for the exact diagnosis. Laparoscopy and a PET scan later would complete the diagnosis. The entire book of diagnostic tools seemed to be at my disposal.

In the event the CT scan was enough to give 100% confidence. The cancer had spread to my lymph nodes, not only to the regional lymph nodes around my stomach, but also to more distant ones down next to my spine. That puts the cancer at stage M1. For oesophageal cancer that means that it isn’t worth attempting surgery, as the outcomes with surgery and chemo/radio therapy for patients at that stage are no better than for those who don’t have surgery. The bright spot is that the cancer hadn’t spread to my other internal organs, which all seemed healthy.

Nevertheless, treatment options were now more limited. The chemotherapy is intended to reduce the size of the cancer and improve my quality of life. It is not expected to remove it entirely, although that can happen in a very small number of cases. I was told that my life expectancy is about 24 months with the chemotherapy.

This happened on Wednesday, 23 December.

Two days before Christmas.

Gillian and I did not have a good Christmas. (Understatement!) Fortunately my mood has improved considerably since then, otherwise I don’t think I could have found the motivation to write this.

Tomorrow I’ll write about the treatment, as far as I can. After that I intend to start writing about my reactions and plans. Please come along for the ride.

{ 12 } Comments

  1. Rebecca | 31 December 2009 at 10:41 pm | Permalink

    Chris, I’m not really sure what to say but wanted to comment. How hugely brave of you to share this shattering news with us, and so eloquently, too.

    I’m so very sad to hear that you have been dealt this blow, and you’re going to be very much in my thoughts now that I know what is going on and what you are facing. From how it sounds, you are grappling with it and preparing to give your best, and I have he utmost admiration for that.

    I know we hardly know each other, but if there is anything I can do to help or support then you only have to say the word…

  2. icyjumbo | 1 January 2010 at 12:22 pm | Permalink

    Rebecca, thank you so much for the thoughts. I am getting a huge amount of support, both from family and friends, and from the NHS. People may complain about the NHS for trivial stuff, but for something like this they are unrivalled.

    It’s not brave, I assure you. We live in a much more open age these days. I would have been writing this down anyway, but now I can put it in a place where others can find it. It may help someone in the future. My family and friends can follow what is happening without me spending all day emailing or phoning.

    The news is still fairly fresh for me too, but I intend to find other people in a similar situation, and if we all link to each other, it’ll make it easier for people to find us later.

  3. Hugh McGuire | 1 January 2010 at 8:16 pm | Permalink

    Chris, I’ve struggled for 15 minutes trying to figure out what to write. I’ll stop struggling and just get on with it: 2010 will be tough year for you, and for your family and friends, but I wish you lots of joy along way. My thoughts are with you as this year starts off.

  4. icyjumbo | 2 January 2010 at 3:16 pm | Permalink

    Thanks for stopping by, Hugh. I’m sorry that you struggled for so long. I can tell you that just seeing your comment here would have been a boost, no matter what you said. It was a bonus that it was so supportive. Do remember that, if you are ever, heaven forbid, in a similar situation again.

    After a few bad days over Christmas I’m managing to keep my spirits up very well. What is truly inspiring is seeing people come by and wish me well. I’m getting a lot of support in real life, but there are only so many people who are nearby at any one time. The great advantage of the Internet is how easy it is for people to provide support and friendship, no matter how far away they are. That’s one of the reasons I started blogging this experience. I want to make it as positive as I can, not just for now, but for my family to be able to look back on after I’m dead.

  5. Hugh McGuire | 2 January 2010 at 4:50 pm | Permalink

    I guess one of the reasons I struggled is that what I was writing kept coming out like advice! But, what do I know? Cancer has touched people close to me, it’s always tough, and of course a very personal thing to deal with, for people with cancer, for those around them. So I didn’t feel right, as “advice” kept spilling from the keyboard.

    So instead, I’ll wish you again much joy, and wonder, and the sublime. There’s no reason cancer should get in the way of any of that – even if it gives you lots of less desirable stuff as well.

  6. RuthieG | 2 January 2010 at 6:44 pm | Permalink

    Chris. I am like Hugh, I don’t know what to say, except I admire you – and your wife. I admire your honesty and your bravery in posting this. I think I would have gone to bits by now, or crawled into a hole. Saying “you are in my thoughts” is trite, but it happens to be true, also. You have a lot of friends all over the world who will be with you every step of the way.

  7. icyjumbo | 2 January 2010 at 9:51 pm | Permalink

    Thank you, Ruth.

    It’s a shattering thing to find out, I know. What is strange is that we do find the strength to cope somehow. It’s like Shakespeare in Love, when Geoffrey Rush says “It’ll all work out on the night, it always does.” It seems to be working out. Even though the end result is not really in doubt, I find that I can bear it. The family and friends (including LV folk) are a big part of the bearing it.

  8. icyjumbo | 2 January 2010 at 9:44 pm | Permalink

    Thank you, Hugh. I’m counting on the joy and the sublime over the coming months.

  9. Wendy Fortune | 12 January 2010 at 10:35 am | Permalink

    Hi, Chris – haven’t seen you since Spain all those years ago, but our thoughts are right with you and we are willing you to get through this challenge. My ex husband, Maurice, died of oesophagal cancer – istn’t that cheerful? Don’t worry, Christopher, there’s more to life than thinking about possible cures. Just be yourself and you’ll come smiling through. Love from your so distant second cousin – Wendy

  10. icyjumbo | 14 January 2010 at 3:22 pm | Permalink

    Yes, Wendy, I remember Spain fondly. It was a long time ago, but if you ever are close enough to visit, please do try, we’d love to see you, and I’d very much like to introduce you to Gillian.

    Harold Pinter, I found out recently, survived oesophageal cancer, which I found out through Antonia Fraser reading her journals on the radio. I’d prefer to follow Harold than Maurice, don’t you think 🙂

  11. Veronica | 23 January 2010 at 11:43 pm | Permalink

    Hi Chris and Gillian
    It was a shock to see you at the hospital yesterday and realise how poorly you are. Thank you for sending your blog link. I have just read it and am really at a bit of a loss as to what to say, other than thank you for your openness and insight, coupled with it’s a real bugger. I was thinking about suggesting to David that he got in touch with you the day before we saw you. If we can be of any support to you in any way, please get in touch, either of you.

  12. icyjumbo | 24 January 2010 at 9:11 am | Permalink

    Thanks very much for the offer, Veronica. I really appreciate it. If I think of anything you can be sure I’ll let you know. I’m getting quite good at accepting help from people these days, and everyone has been very good about offering and giving help. Peoples’ kindness awes me.

    As for the openness and insight: blush! The openness is just me, actually. I find it hard to keep most things private, and that instinct has turned out to be surprisingly good for me at this time. I started the blog just to give people information, but found that I didn’t want to whine about my condition in public, so had to force myself to be positive. Then I found myself thinking more positively all the time, and I realized that the main benefit of writing the blog was in keeping me upbeat. Having readers really helps with that, so please do carry on reading, and commenting when the spirit moves you.

    I hope things are well with you two, given that we met outside the hospital. Let me know, if you feel able to.