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myhusband has just been diagnosed with cancer of the oesophagus

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lesley_78762
lesley_78762

Symptom loss of weight found at well man check up. Has had endoscopy, tumour is 7cm extending 2cm into stomach. Had ct scan yesterday mow awaiting consultant appointment. Very anxious. Does lack of any symptoms indicate early stage

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  • clare71892
    clare71892 lesley_78762

    Posted

    Hi my mother had experienced mild heartburn for 2 weeks before she was diagnosed. The tumour was a similar size at same place. She was diagnosed at stage 3b. Unfortunately I think its common to experience none or very little symptoms with this type of cancer. My nan had this cancer also. If possible I would try and have the early tests done privately. My mom had about about a months worth waiting round. (Pet scan, cat scan, waiting for consultants to get together and discuss) before treatment plan was put together. Hopefully it will be operable for your husband. Alot depends in if it has spread to outer layer. Wishing your husband all the best. Stay strong and positive
    • lesley_78762
      lesley_78762 clare71892

      Posted

      Thank you Clare. I hope we will soon know the test results and get on with whatever needs doing.
    • lesley_78762
      lesley_78762

      Posted

      Just an update to let you know that my husband had scan after three chemo cycles which showed the tumour had shrunk. Oncologist was very pleased so three more sessions planned, last one on 31st December. The 4th session gave more side effects than the first three but getting through it, mainly tiredness and loss of taste, but still eating normally and has gained a little weight. So far so good

      lesley

  • AlanJM
    AlanJM lesley_78762

    Posted

    I am sorry to hear this news.   The oesophagus is 20cm long, so this is quite a large tumour, but it is the degree to which the tumour has penetrated the wall of the oesophagus that is the important thing as far as treatment is concerned.   I think you will find that things move quickly from now on, in that the hospital will investigate with further scans for a TNM analysis.   The T stands for the degree to which the tumour has penetrated the lining of the oesophagus.   T1 is very early stages on the surface, and it goes to T4-5 when it has broken through towards other organs.   It is usual to have swallowing difficulties for a T3 stage tumour, for instance.   The N stands for how many lymph nodes may be affected.   Lymph nodes are the junctions through which the cancer spreads to other parts of the body.   M stands for whether there has been metastatic spread to other parts of the body or not.   So it is only by these scans that you will be able to tell what the treatment options are.    Nowadays each patient's case is discussed by a Multi Disciplinary Team (MDT) involving surgeons, oncologists, radiographers, nurses and so on.  This can lead to a slight delay some times;  but it also means that the decisons reached are better ones.  

    There are two main types of oesophageal cancer.   The predominant one is adenocarcinoma that tends to be towards the stomach in the location you describe.   It is invariably preceded by Barrett's Oesophagus where lesions develop because of the effect of stomach acid, but sometimes this is not felt by the patient in the form of heartburn (although there may have been heartburn in the past).   The other form is squamous cell carcinoma, that is often located towards the throat.

    The treatment will entirely depend on the TNM situation.   Some patients will have chemotherapy and/or radiotherapy and then an operation to remove the affected part of the oesophagus and stomach, and sometimes chemotherapy afterwards.   This will depend on the the fitness and strength of the patient.  It is a major operation, but I know many people who have had this surgery and enjoy a good quality of life afterwards, even if they do have to be careful about what and how they eat.   The chances of success in the long term are very much affected by the TNM analysis.   If caught in the early stages, the prospects are good, and I know a good number of people who have been treated successfuly at Stage 3.

    This news will be a shock to you, and there will be a succession of medical appointments which will tend to dominate your lives.   But there is also a mental / morale aspect to it all when you will need to talk to each other about what you are facing,and the succession of feelings of bewilderment, anger and so on.   You will need to think about the others that you share your news with.   Some people will react unhelpfully, but it is not their fault, but you will find surprising reserves of strength support and friendship that you would never have realised.   Cancer centres like Maggie's centres are really helpful, kind and comnstructive as well.

    You might also think about contacting the Oesophageal Patients Association who have a website and a helpline on 0121 704 9860

    • lesley_78762
      lesley_78762 AlanJM

      Posted

      Thank you for this helpful reply. I am sure we will both cope better once we know what is going on. At the moment I seem to be suffering more symptoms than the patient which is pathetic really. We comfort ourselves with the thought that he feels well and probably wouldn't even have gone to the gp yet, so hope it has been caught early and the endoscope was able to pass through without obstruction. Thank you again
    • AlanJM
      AlanJM lesley_78762

      Posted

      It is normal for the spouse to go through the mill over all this, and people quite often do not recognise it because all the attention is on the patient.  It would not be natural if you were not anxious!   In some ways the uncertainty between diagnosis and knowing what the treatment plan is can be the worst period.   A bit of delay in starting the treatment won't make any difference even though you so want to get on with things.
    • lesley_78762
      lesley_78762 AlanJM

      Posted

      You are so kind. Today we have been given a 'meet your consultant' appointment on Wednesday as so far our only contact has been with nurse practitioner. Then they have a mdt meeting on Friday when all results should be known, then an appointment with the md team early next week. All in all less than three weeks since the endoscopy. Quite impresssive for the NHS when you hear such bad comments. Lesley
    • lesley_78762
      lesley_78762 AlanJM

      Posted

      We have been told it is a much rarer form called small cell carcinoma mostly found on lung. No result from ct scan. Will hear after MDT meeting on Friday. Todays meeting was to access dereks general health for major surgery should that be treatment suggested. Haven't been able to find much info on scc, only that its prognosis is not good but article was written back in the 90s.things probably changed since then
    • lesley_78762
      lesley_78762 AlanJM

      Posted

      Alan, do you know if it is a side effect of carboplatin/etoposide chemo to be breatless, not in a chesty way, but as if its hard to get enough air.  my husband is in the middle week of his chemo cycle when obviously his red cells are very low.  any advice from anyone on line would stop me panicking.  lesley
    • AlanJM
      AlanJM lesley_78762

      Posted

      I only know what the Macmillan website has about this medication but this website does not allow a link.   Go to Macmillan website, the cancer information and so on or google macmillan and the medication.

      "Tiredness.   Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s finished. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery."

      People do react in individual ways to chemotherapy.   They are strong drugs and it is common for people to need to check back with the oncologist if they are not being 'tolerated' well.    It would not be surprising for this to cause a lot of activity in the lungs, and this can make it feel as if you are being stifled.   It is very unpleasant and debilitating because it can feel that your lungs are fighting to be able to work.   So so feel free to check back with the hospital as they will expect you to do this.

  • eric40010
    eric40010 lesley_78762

    Posted

    I  am 71 and generally fit. Only symptoms i had was a blockage when eating. I was diagnosed with oesophageal cancer last november, and after numerous test, scans and chemotheropy underwent successful surgery in may. My op was about six hours and was a doddle, so i say to anybody who is worried, please dont be, worry is a killer. be positive, forget about the big c word, its a problem that needs fixing. get it done. If anything the chemo was the worst, it will make you very poorly, so if you can handle that you are halfway there. Of course your life will change, eating small meals etc. Join the OPA they have area meetings and the info from past patients helped me no end. Good luck and stay positive.  
    • lesley_78762
      lesley_78762 eric40010

      Posted

      Thank you for your reply and glad to hear you are coping well. In a few hours we see consultant when we may find out more, although possibly not the action plan until after mdt meeting on Friday. Its a worrying time isn't it? My husband hasn't even retired yet and we were looking forward to it so much so this has come as a big shock. Thank you for your support which is a big help. Lesley
    • donna11913
      donna11913 eric40010

      Posted

      Hi Eric I'm glad to hear things have worked out for you after having cancer of the esopugus.  I'm curious where in your esopugus your cancer was and how large the tumor?  We are waiting to here what form of cancer my husband has but we know from the endoscopy that it is rather large.

      all the best to you Eric. 

    • AlanJM
      AlanJM donna11913

      Posted

      It is often the extent to which the tumour runs round the circumference of the oesophagus that is the things that restricts swallowing.   There will be a TNM analysis done.   The T stands for the extent to which the tumour has penterated the lining of the oesophagus.   T1 is on the surface, and the system runs to T4.   N means the number of lymph nodes that are affected.   The lymph nodes are the junctions that are involved when the cancer goes to other parts of the body.   A few lymph nodes being affected can be treated effectively.   And M means whether there is metastatic spread ie to other parts of the body.   So it is the TNM situation that affects things more than the size of the tumour, but the two things do tend to run together.   That is why you have to have the scans rather than what can be sen with the endoscopy.
    • donna11913
      donna11913 AlanJM

      Posted

      Thanks for all your information very much appreciated.  They have called and ct scan is booked for the 13th next week and a meeting to talk to a surgeon the next day.  We are still waiting from the clinic that did endoscopy to find out which cancer it is he has.  My husband still continues to work and be in good however I'm a mess but try not to be around him.

      when we speak to the surgeon next week do we have any way to pick what  hospital  or surgeon ? I guess all of us what the best one. 

    • AlanJM
      AlanJM donna11913

      Posted

      Firstly, the decision about surgery depends on the extent of the cancer and the fitness of the patient.   There is a trend towards only doing these operations in centres of excellence, mainly because the more that surgeons do, the better they are at them.   You can ask how many of these they do at the hospital each year.  

      It is easy to give advice, but I think in your position I would go to a Maggie's Centre or equivalent and talk to somebody trained and experienced in dealing with the effects of having a loved one being diagnosed with cancer.  The Macmillan support line might be a good place to start.    Somehow or other you have to get your mind round the situation you find yourselves in.   If you can both find a way to manage the feelings you are going through, it will not be so hard.   But people tend to deal with this in different ways and there is no right or wrong.   Your husband might want to deal with it in a different way from how you do.    And be prepared for all the attention to be on the patient rather  than the spouse, who goes through the mill as well.

    • donna11913
      donna11913 AlanJM

      Posted

      Thanks Alan.  Is this a service for Canadiabs's as well?
    • eric40010
      eric40010 donna11913

      Posted

      Hi donna. My tumour was at the base of my oesophagus where it meets the stomach. it extended just into the stomach. When i had an endoscapy at Nottingham I was told the scope would not go through and on a scale of 1 to 4 it was a three, they said it hadn't penetrated the wall. After chemo a laperoscopy and endoscapy showed no tumour. The surgeon Mr Duffy at Nottingham was terrific, he did a full oesophagesectomy to take away the tussue where the tumour had been. I beleive my totally positive attitude and help from a friend who is a spritual healer helped me do it. I have my six months check next week and i'm going in dancing.
    • lesley_78762
      lesley_78762 eric40010

      Posted

      Hi Eric, what good news. My husbands tumour is in the same place as yours but is small cell which the team decided not to operate on. He has now had twovof the planned six chemo sessions which they hope will shrink the tumour, so far so good and not too many side effects. Just tiredness. Hope you continue to do well. Great to hear positive outcomes.
    • donna11913
      donna11913 eric40010

      Posted

      Thanks for sharing your experience Eric and it so nice to hear some positive feedback.  I'm happy things have worked out well for you. This week we find out which cancer he has and cat scan will let us know if it's anywhere else and the plan of attack so we are doing our research to see what others have done.  Good luck at your 6 week check up Eric and keep on dancing smile
    • eric40010
      eric40010 lesley_78762

      Posted

      Hi lesley. what brilliant news, i am so pleased for you both. However I found the chemo the worst part. i still lost weight with it, over two stone, lost my taste buds, everything tasted awful, I had to force myself to eat. I still have'​nt got my sence of smell back yet. I lost my hair,(its now back). I was so ill. The next few months will be very hard. Its taken me three months to get the chemo out of my system and its not all out yet. So good luck and keep us all posted.
    • donna11913
      donna11913 eric40010

      Posted

      Which type of cancer did you have Eric?  I have found out that my husband has adenocarcinoma. 
    • lesley_78762
      lesley_78762 eric40010

      Posted

      Hi Eric, we are finding it hard not knowing whether the chemo is actually attacking the tumour within, and waiting for the halfway scan is nerve wracking! Usually if you are ill you know the medication is working because you start to feel better. Lesley
    • AlanJM
      AlanJM lesley_78762

      Posted

      When the tumour has been causing problems with swallowing, the chemo may result in people finding that swallowing is easier, reflecting the fact that the tumour has shrunk, but I do not think that this would be relevant in your case.   The reactions to chemotherapy are very individual, and some people 'tolerate' it well and it works.   But you are right that it is very frustrating not to know about progress until you get the next scan results.   Unfortunately these things do take much longer than we would wish, and that is partly because the body is so complicated.    I think it is one of the aspects of being 'out of control' over what happens, and having to come to terms with this. 
    • nancy54455
      nancy54455 eric40010

      Posted

      Hi Eric, I am posting this for new folks since it appears you are now mostly healed.

      I am glad for you that your surgery went so well. However, for me it was anything but smooth. I was in the top rated cancer centre but suffered several complications. I don't think it's fair to call major surgery a "doodle" whatever that is. The American Cancer Society calls this surgery "formidable" and equivalent to bypass surgery.

      After 6 months I am still far from healed. This surgery is not to be taken lightly. I would also never leave the patient alone in the hospital, as pain drugs cause confusion. My best to all.

    • donna11913
      donna11913 eric40010

      Posted

      Hi Eric I was looking back at the thread of conversation regarding your esopagus  cancer and I don't see what type of cancer you were diagnosed with and also what stage your cancer was ?  I'm happy things went well for you and continues to do so.  My husbands tumor Is  andencarinoma about 6 centimetres at the base of thr esopagus at the stomach but no other organs effected however some,distant Lympe nodes in the abdomen have cancer so that's why no surgery unless the chemo can get rid of the Lympe nodes with cancer.  They did radiation first while they waited for the her2 result came back and it is negative now we know and clinical trials for negative at this time so hoping the chemo will do the trick he has only just had his 2nd treatment so it will be a while yet to check on how it's doing.
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