Is this bad?

I'm currently undergoing staging tests for adenocarcinoma of the oesophageal junction. The first test (CT Scan) indicated that the cancer was still localised and had not spread - which was good news of course. Since then I have had a PET scan (but no results from that yet) - and today I had an ultrasound endoscopy. After the procedure I asked the doc what he had found and he said: "T3 locally advanced".

Looking on the 'net I'm disturbed to find that prognosis for Stage 3 Oesophageal cancer is 14% survivability to five years...

T3 seems to suggest that the cancer has extended through all layers of the oesophagus. Is the prognosis for this stage as bad as these websites suggest?

Kev

25 Replies

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  • I personally know quite a few people who had surgery after being diagnosed with T3 stage oesophageal cancer many years ago, and they enjoy a good quality of life. Obviously the more it has advanced, the less likely it is that there will be curative treatment that is successful, but the statistics are meaningless when it comes to your own situation, because there is only one of you, and the treatment will either cure you; or it won't. So, if you can, try and stay positive. Others have successfully been cured after similar test results, and we will all hope that you will join that band of grateful people.

    The best aspect of the modern practice of having so many scans before surgery is that the doctors do know in much more detail what your situation is. It is far better doing it this way than 'exploratory surgery'. So it will come down to the expert judgement and skill of the surgeon and the others on the team as to the exact course your treatment will follow. If you have chemotherapy prior to surgery for instance, some people react very much better to the treatment than others.

    It is a very testing time for you, regardless of the decision and the outcome, but there are lots of people who have travelled the same journey before you. The other thing to bear in mind is that the medical decisions about your treatment do get discussed at some length in a multi-disciplinary team meeting where all the different aspects are discussed by experts in their fields. It is not a snap decision, and it is a better decision because of the process. But it does take a bit longer, and the period of uncertainty can be difficult. Keep in touch with the specialist nurse.

    So let's all hope for the best possible outcome.

  • I was in the same position as you earlier this year. I too was dignosed with locally advanced stage 3 junction cancer. I was offered chemo followed by surgery & the talk was all of curative treatment. My advice would be to talk to your specialist nurse. She will have the information after the MDT meeting. In my case I was allergic to the chemo drugs & during surgery it turned out the cancer cells had spread further than thought. Still here though, & all symptoms present before surgery have gone.

  • Thanks fredsonic. It's very much a roller-coaster ride during staging tests isn't it? One comment gives you great hope - and another knocks you down. I keep telling myself (and my wife) that there is no point in getting worked up until we know for sure just what the situation and professional prognosis is. There is a MDT meeting tomorrow where my case will be discussed. I will make contact with my specialist nurse later tomorrow if she doesn't contact me first.

    Thanks for your response.

    Kev

  • Alan - thanks very much for that. My wife and I have been feeling pretty 'down' this afternoon after this 'mini diagnosis'.

    I know we shouldn't - we should wait until the next meeting with our consultant after the MDT meeting, when *all* the results will be in - but it's very difficult. We read a 'good news' story on a website or a forum such as this - and it cheers us up no end - and then we read a website listing survival rates for various 'T' ratings - and down we go again!

    Your response was much appreciated. Thank you.

    Kev

  • Hi Kev - I too was diagnosed T3 my cancer had broken through the oesophagus and had spread to lymph nodes towards my liver and lungs. My diagnosis started as we were moving area - the first meetings we had with specialists was very pessimistic- when my wife asked about prognosis she was asked did she really want to know! As soon as we made contact with Derby hospital (our new area) it was a totally different attitude with nothing but positive talk and the possible cure with the surgery. I had chemo and then had an Ivor Lewis op at the end of May 2011. It was decided I did not need chemo after the op. It is major surgery and recovery has felt long and hard. I am envious of people who seemed to have made remarkably quick recoveries -returning to work playing golf etc. I am having a CT scan in December because I have become quite breathless . Stay positive - do not get hooked on statistics -alot of them are now out of date anyway. Good luck Terry

  • Many thanks Terry. It's stories such as yours that lift our spirits and make us think a bit more positively. This forum is a great help.

    Kev

  • Hi Kev,

    just joined the OPA and I think my case, which seems to be very similar to yours might prove similar.

    I was diagnosed in April 2011 via staging laprascopy, CT, ultrasound etc to have a T3 poorly differentiated adenocarcinoma at the funds of my stomach next to the entrance of the oesophagus. They did CT scans and biopsied areas and I was found to have no secondaries.

    I had 3 cycles x 3 weeks of chemo ACX

    the tumour after the staging was adjudged to be about a year old and 2-3 cms wide, ice cream cone inverted shape and about 3cms long.

    The chemo shrank it considerably. I was lucky and got very few side effects from it.

    On October 3 I had a total gastroectomy and about 5cms of my oesophagus removed. They connected it up to my bowel without a drain and started me eating 5 days after the op and walking day 2. I found, with the pain relief that the operation was pain free .

    I'm 56 and no athlete, but I came through the operation ok and was back home after about 13 days. I had keyhole sugary in Maidstone and this has helped a fast recovery. 7 weeks on I am eating quite well with few side effects apart from diarrhoea from time to time. I am trying to chew more and eat moderately and this seems to help.

    My only problem is that I've recently had a lot to teeth problems, which I hope are now solved and still feel a bit tired from time to time but slow 3 - 5 mile walks are ok , just tired afterwards.

    I got the histology 2 weeks ago. They removed 50 lymph nodes and examined 27. I was told that they found no trace of cancer.It therefore appears localised and hopefully removed ?? but I am having another 3 cycles of chemo starting Thursday in case any micro-cancers are in the blood vessel or nervous system. They also found that it had spread sub-serosal which was better than originally feared.

    FYI my Mother and her sister both died from the same thing. I have never smoked and don't drink that much. Genetics can therefore play a part.

    I have looked at statistics and all I can say is they are statistics. Statistics are skewed by a whole variety of facts and certainly do not contain your own personal characteristics, so it is so difficult to make a sensible assessment.

    I have read that prognosis is generally poor as a lot of people are discovered very late. I was fairly lucky, I only had one symptom of severe anaemia and that meant that we were able discover it.

    Some of the things that have happened to me are not usually meant to happen e.g. I didn't lose my hair or get nausea or diarrhoea during chemo but I did get 3 infections that I wasn't told about and I have had terrible toothache and some teeth extracted, so who knows...

    best wishes

    Brian

  • Hi Brian. Your reply demonstrates the value of support groups such as this. You are absolutely right - general statistics do not take into account individual circumstances. I am 64 (65 next Feb) but I am also pretty fit. Like you I am no athlete but neither am I a couch potato. I am a DIY fanatic and only a few weeks ago was undertaking quite strenuous projects. Although I was 'knocked back' by the 'T3 Locally advanced' diagnosis - that may be precisely what my team were expecting and no surprise to them. I will be speaking to my specialist nurse later today after she has attended the MDT meeting this morning. Hopefully she will have a positive update for me.

    Thanks for responding. Kev

  • Hi Kev, if you don't listen to me , take the advice from Terry and Brian seriously. I never bothered looking at any info on the web before my operation the only person I listen to was my surgeon and the people he worked with. Going onto the net and checking everything you're being told tells me you don't trust your surgeon. I was diagnosed in January and given until the end of June the same year - that was twenty two months ago. I couldn't have chemo for medical reasons. I was told that chemo was only 10% of the total cure and surgery was the best cure and I was the main cure. All this talk about "T" this and you've got "T" that is meaningless to me, it all sounds a bit like school boy bragging. It is down to you, you've been given a chance to live, don't question it, fight for it. I've earned a living compiling statistics - statistics are like people, the more you torture them the more they'll tell you what you want to hear. Terry and I both had our operation at Derby.

    All the best

    Mark

  • Hi Kev,

    I think the internet can sometimes overwhelm you with information and at the time you are reading from it you are already in a very delecate state of mind and can tend to see the negative too easily. Treatment is improving all the time, believe in your clinicians and be guided by them is my advice. I am sorry that you had negative atitudes from your first set of clinicians but you seem to be with a more positive group now. Be strong and have belief is what I would recommend. I was at the OPA London group on Saturday and the room was full of people that had recovered from different stages of this awful cancer, if there is a group near you and you have not already joined, I urge you to do so, it is so encouraging to meet and talk face to face with people who have been there. Be strong Kev and very best wishes to you and your wife, it is a terribly trying time for you both.

  • Hi Verena. Thanks for your response - allthough I think you have partly confused my treatment with that of Terry. It was Terry who had the poor initial treatment, not me! In fact I cannot speak too highly of the way I have been treated since my gastroscopy on 3rd November. I have been kept informed by my specialist nurse, and over a space of just 19 days have had a gastroscopy, CT scan, PET scan, and EUS. They are certainly not wasting time. I agree with you about support groups. There is such a group (called Little and Often) at Liverpool Broadgreen hospital. I will be attending one of their meetings on Thursday.

    Thanks for your interest and your support.

    Kev

  • Hi Mark. Hmmm. I have mixed feelings about your comments. The fact that I want to learn as much as I possibly can about my condition is no indication that I do not trust my team - in fact just the opposite. It's my body, however, and at some stage I may have to make decisions about choices of treatment etc. I will not be able to make informed decisions without being reasonably knowledgeable about my condition. I do agree, however, that I should steer clear of statistics. They have no relevance to the individual.

    Kev

  • I've not come across very well. Don't have a problem with knowing about what you're dealing with. It's more to do with where you get your information to make a proper informed choice. My own experience tells me that the medical team looking after you will have the best up-to-date knowledge about you.

    Quack wed sites do not have that knowledge and at best can only give an uninformed comment. I personally would not base any life changing decisions on what some web site said.

    Everyone on here has been diagnosed with some form of Oesophageal cancer and that is where the similarity ends. We all react differently to the cancer, treatment and the operation.

    The only people in a position to help you make the informed choice is you and the medical team that has looked into every corner of your body. They will know what you can cope with and the best treatment. for you.

    Mark

  • Yes, all fair points Mark.

    Kev

  • I would say ignore all stats as they typically measure 5 year survival rate. The stats do not take into account other medical issues which the patient may. be suffering from. Note that with this cancer, diagnosis is typically found in the older you are, hence the greater the chance the stats will include other issues.

    Also, medicine and treatment has improved significantly in the last 5 years.

    I was given a 3% chance of survival based on staging and previous stats, and I'm still here and kicking. Reading stats can be terrifying, but remember they do not directly relate to an individual. Be strong in yourself and get all the support you can from family and friends and the docs. Keep asking questions and I am sure someone will have an answer for you in this group.

    My thoughts are with you.

    Jay

  • Thanks Jay. You are 100% correct. I still intend to keep learning about my condition - but I will steer clear of statistics from now on!

    Kev

  • Hi Kev. Like you I did a lot of research on the net looking for alternatives to surgery for cancer of the stomach. Despite this search, getting a second opinion and asking my local oncology hospital if radiation was an option, the answer was always surgery if there is adenocarcinoma which can spread rapidly.

    I was lucky and had T1 ?? but after putting the op back 6 months it became T1B having gone into the 2nd layer of the stomach. I think its important that you have treatment and probably surgery asap. My investigations came to nothing so the team were right to suggest surgery. I was not offered chemo and i think they only offer this to shrink a large tumour and hit any other localised cancer cells before an op. I must ask my surgeon if i need follow up chemo.

  • Hi Medway

    I've certainly not been looking for alternatives to any treatments suggested by my medical team - simply trying to increase my knowledge of this type of cancer so that when my medical team are talking to me about my condition I can better understand what they are telling me. Although I was concerned about the 'T3 locally advanced' diagnosis - this may simply be what my medical team were expecting. Right from my first appointment with my consultant he was talking about chemo followed by surgery - so it was obviously clear to him, following the initial CT scan, that it was not at a very early stage.

    I don't yet know what the PET scan has shown up - and that is my major concern and worry at the moment. If it confirms what the CT scan showed - ie no spread to other organs, then great. If it doesn't - then that will be bad news indeed...

    Kev

  • Hi, My case was very similar to yours, I had my op last April. They told me my cancer had not spread and they said it had all been removed. Initially I was told it was T1 but after the op it was upgraded to T3. I appear to be recovering well if not slowly. I also do not need chemo at this moment in time and I am due my next scan next April. I can understand you being "down" as I was depressed for a while post op but am ok now. I hope this will cheer you up a bit. As some of the others say, don't pay attention to statistics.

    All the best

    Tim

  • Thanks Tim. All good news. I think when you are still in the diagnostic stage you tend to clutch at straws - some make you feel better - and others knock you back down again. My specialist nurse attended a MDT meeting this morning where I understand my case was due to be discussed. I'm currently waiting to hear from her...

    Kev

  • Hi Kev

    It seems to me that you have now drawn your own conclusion and it is good that there are so many to offer sound advice. You are similar to me in that I wanted to know as much about the illness as I could so I could also make informed decisions. Remember the staging process is not an exact science but they have to be as sure as they can that an operation will be viable for you. Our medical experts don’t always get it right; if they did there would be no need for a second opinion, and many second opinions have ended up offering a cure. You are doing the right thing by going to a centre of excellence for further investigations, and I wish you good luck with your ongoing treatment plan. It is not an easy time for you or your family but you and your loved ones will find a strength you never thought possible, and together will get through the long journey ahead.

    For myself I always prepared myself for the worst, but always hoped for the best and the best is what I hope for you.

    Below is something I wrote some time ago-

    ~Hope~

    Within Pandora’s Box hope was locked away from humanity and we were as candles unprotected from the changing fortunes of the wind yet upon the release of hope our fragile flame is able to burn brighter against a fortuitous wind, for what shall become of us if we do not have hope to shine back into the face of fear and adversity as we journey along life’s precarious path, for we may have nothing else to give or receive except the extended hand of hope.

    Keep up the good fight,

    Steve

  • Many thanks Steve - and yes, I will keep up the fight for as long as I am able!

    Kev

  • A working life of nursing, then a sudden diagnosis of oesophageal cancer

    Chemotheropy was not available.

    No centres of excellence or specialist nurses.

    Referred to a surgeon, he offered me my only possibility of survival an operation I didn't ask any questions, I grabbed my only chance.

    Statistics gave a very bleak picture of the future.

    Sounds dramatic but I am now 17yrs post operative. Quality of life is good,I have seen my children settled my grandchildren growing up.

    How glad I am my surgeon gave me hope.

    The amount of support from all sides was amazing and played a big part in getting me through it.

    So there are a lot of people out there wishing you well and also thinking of your wife

    Sally

  • Sally, I've just read your post out to my wife. It cheered both of us no end. Thank you so much. The news today from my specialist nurse was positive - and I have started a new 'update' thread in relation to that. This journey is very much a roller coaster ride!

    Thank you again Sally.

    Kev

  • Hi Sally

    Thank you for comming on to tell us your story, it gives hope to those who follow.

    Take care,

    Steve

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