John's wife desperate for hope

Hi everyone,

Firstly thank you to all who have helped and supported John during his horrific and ongoing 'cancer journey'. As you will all know the Dr's have found a tumour in his esophagus, the cancer has spread through the lymphatic system and the lymph node behind the esophagus is "very large", there are also other organs affected but I can't remember which - I think that the pancreas was mentioned. He is going for a liver scan on Friday and a further scan next week. We don't know how aggressive the cancer is but he has been told that he will not be suitable for surgery or radiotherapy because it had spread but should be offered palliative chemotherapy (but only if he wanted it!!) We were freaked out by this - nobody wants to hear the word palliative. However, we were told by a macmillan nurse that palliative chemo was not the same as palliative care and was "to keep you as well as we can for as long as we can". This offered some hope until I started to think about it and realised that the chemo will not only destroy the cancer cells (hopefully) but will also kill the other cells and eventually John and also whilst reading up on it that it doesn't work for ever and might stop killing the cells - then what?

We are beside ourselves. I appreciate that everyone is different but is there anyone out there who has had what was deemed to be inoperable cancer (which has spread) and is having success with treatment and possibly an improvement maybe even to the point that surgery has become an option.

I have looked at the statistics of success which was rather stupid of me as they did not offer much hope and only distressed me more.

I appreciate that this is a busy time but please let me know if there is any positive news or is this the beginning of the end - which just does not bear thinking about.

Thank you

7 Replies

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  • Hello...sorry you have to be here but I know the fear and uncertainty your going through right now. I was feeling the same after we got the diagnose's after a endoscopy when my husband developed some swallowing issues. That day changed our life and turned our life upside down, Surfing the internet I would not recommend it is very scary and will only cause you more fear. You are best to wait to find out more information after tests such as what cancer your husband has and if the biopsy comes back positive or negative for HER2. A PET scan will determine if the enlarged Lympe nodes are cancer. Everyone journey is a different one even if they have the same cancer type but be prepared for the for many changes in your life and it's not going to easy. Take one day at a time and never give up.

    My husbands Esopagus cancer turned out to be Andecarcinoma which is a very aggressive cancer and spreads rapidly and by the time he developed symptoms his tumour was already 7 cm and it had spread to his abdomen. If I can help answer and questions at all please feel free to ask me. Trust me I know what your going through right now. I feel your pain.

  • Thanks for your message and helpful information,

    Marie

  • Marie....feel free to ask me anything. I also have some good sites with lots of information about esopagus cancer.

    My email address is donnathompson@bell.net

  • Hello. My dad is in the same position as your husband, Stage 4 OC with inoperable tumour which has spread to Lymph nodes and Liver. He is on Chemo as although it is tough, mainly due to his extreme weight loss and feeling sick a lot, his body is taking the chemo well.

    What I want to say is that you have to take the journey, no two people's experiences are the same, it is incredibly hard and for a "control freak" like me, not knowing is the absolute worst thing. Reading the stats is a bad thing to do - I did that 1st and was totally horrified but my dad may be one of the 4. The doctors won't know anything until after the CT scan (which will be somewhere between round 3 and round 4 of chemo) and then they'll be able to see what effect the chemo is having. I am hanging on to some bit of positivity there. If you want to read some positivity, reads Dave's experiences of Cancer Chat cancerresearchuk.org/about-...

    I hope this helps and keep strong for whatever may come your way.

    Ange

  • Hi, I'm really sorry to hear about your distressing situation and send you and John my best wishes. The doctors will be working through a detailed diagnosis and when this is complete they will present a treatment plan that will best fit John's needs. If John is medically fit, the chemo that he will be offered will be tailored accordingly and may (as Zoe points out) incllude targeted therapy if the tumour is HER2 positive (you may have heard of Herceptin which is widely used in breast cancer). As the McMillan nurse intimated, palliative chemo is given with the aim of controlling disease (slowing the tumour growth or shrinking the tumours) and John may be offered less toxic combinations (2 instead of 3 drug combinations) so that toxicity doesn't become the over-riding issue. There are different drugs and combinations that can be tried over time and I'd also suggest looking at the option of partcipating in a clinical trial (if available) at some time down the line, as this can give the opportunity for access to drugs not available on the NHS. Your oncologist will be able to give some guidance on this but if you wanted to be proactive you can look at the clinicaltrials.gov site. My thoughts are with you both.

    All the best,

    David

  • I am afraid that I cannot offer any positive hope as I am going through the same thing. Inoperable tumour spread to the the lymph nodes. I too looked at the statistics and it does not leave you with much hope. Even my consultant confirmed the statistics with a nod of the head. However its one in four and why cannot John and myself be the 2 in 8 the odds are not that long. I am thinking of you at this difficult time.

    When I was first diagnosed with this - I was raging and remembered my very best friend who fell into a coma and died of cancer complications aged 64. She did not even know she had cancer and I wanted to die like her. Then over the weeks my mind has changed. The treatment is not good but every day I am alive I can do things.I have little money to leave but its all going to the people I want it too. I am in touch with friends on a weekly basis. I can spend Christmas with my family and even see in the New Year. A family weekend with 18 of us has been organised by my son and daughter in law in February. There is talk of a week in Portugal (if allowed) in March beyond that no plans. However I know that my friend would have cherished these things. I dont know if this has helped but good luck to us both and a happy christmas and we dont know - new drugs in the new year. Fingers crossed.

  • This diagnosis does rock you back on your heels and give you a shock. So you both have to face a mental struggle to come to terms with the fact that this illness may very likely be fatal eventually. Much as you would have preferred it to have been caught earlier, and in time for curative surgery, this did not happen, and nobody is to be blamed for this. I am sure there have been occasions when chemotherapy has had an unexpectedly successful outcome, but maintaining hope also has to be tempered with realism. Having scans on the other organs affected will give the doctors and you a better picture of what the prospects are. Part of the problem may be that the tests and scans find things that do not actually give us much pain or problems at the moment, but are signs of things to come. But sometimes they find that organs are clear, or likely to respond well to chemotherapy.

    The situation will focus your minds on some fundamental things and it will probably end up with you and John doing some serious and emotional talking together about the situation you face. Emotions are natural! Some people use this period to concentrate on doing things that they have always wanted to do in life, but have never quite got round to. It is a time of uncertainty, and this is not going to change any time very soon.

    On the medical side, the treatment will be given with your agreement. You should feel throughout that you could decide to stop any treatment if you feel that it is right. Chemotherapy can be helpful but everyone reacts to it in their own individual way. So it may well be worth a try, and many people do opt to give it a go. It won't provide a cure, but it may well extend John's life and make things more comfortable. Sometimes cancer cells change, a bit like a virus, and will inevitably prevail in the long term, but it does entirely depend on the details of each patient.

    You will probably want to be reassured about pain control down the line into the future. These days pain control can be very good, but different hospitals do vary a bit in how good they are. It is a question of finely judging the dose and being able to increase the dosage when it is required without any undue delay.

    You will almost certainly feel that you are not ready for this, but hospices are usually the best at managing quality of life, and are normally the most expert at pain control. They always say that patients should get in contact sooner rather than later. Hospital staff are, quite naturally, geared towards trying to cure you, or make you better, and will sometimes naturally launch into treatments that can be distressing when the patients themselves might prefer to be left alone and in relative peace; in the hospices, or more usually with hospice care at home, this medical priority does not take over in the same way. So asking to be referred to a hospice is a good thing to do at the right time if things go in that direction.

    I do believe that it is good to talk things through with somebody at a centre like Maggie's Centre, or the equivalent. There are a lot of emotions involved, and they are trained to help us to think a bit more clearly about what we face.

    People's reactions to hearing the news will be variable, and not always helpful, but try not to be too hard on friends who do not know what to say. But you will find unexpected sources of strength and friendship from sources you do not expect.

    If you are still reading this, and thinking that what you asked for was hope, I do know quite a few people for whom the 'palliative treatment' has been a good and relatively long period in their lives. They have enjoyed a good quality of life and have got around and done things much as they would have before, in between hospital visits. Somehow they come to terms with what will happen round a distant corner. They describe it as an odd feeling once the immediate shock of the diagnosis has passed, and never know whether they will, for instance, be around next Christmas. Sometimes they have worked through a bucket list and then still feel relatively well, and have to keep adjusting to the fact that they are still alive and relatively well. The ones who seem to do best are those who try and enjoy the best quality of life for whatever time will be granted to them.

    Every patient is indeed different, and statistics are meaningless for an individual person. It will probably come down to facing each hurdle as it comes, and I do wish you and John all the best.

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