Diagnosed with a rare terminal cancer with a poor prognosis

Hi there

2 weeks ago I was diagnosed with a rare metastatic small cell cancer with a large oesophageal tumour and others throughout my peritoneal cavity. With chemo, I have been given a year at best. I am 64, live alone with no family nearby though I do have good friends. I led a very active life and had planned to quit work this summer just enjoy doing all the things I love most.

 I had a first round of emergency chemo which reduced all my symptoms within days and I almost believed that they had made a mistake in my diagnosis. This week the symptoms and pain have started returning leaving me in no doubt that this thing is there and doing its worst.

I have gone through so many emotions, sadness for my family and friends, sadness for the years I won't get with my toddler granddaughter and a new baby due in September, sadness for the long walks I won`t get to do, just overwhelming sadness. I think I am handling it well trying to be grateful for the life that I've had and getting everything put in order but it is so much to process.

I havn`t left home apart from hospital visits for 3 weeks and am just shrinking to a skeleton despite eating as much as I can physically contain. I am scared as to how fast this thing has progressed silently and now evidently.

I am considering getting a second opinion from xxxx or xxxx hospitals although living in Leeds would make travelling to either quite difficult, I will do it if they think they can offer me something more.

Just a few questions 

How do I get more calories in? I cannot tolerate the milk drinks etc and am already eating chocolate, biscuits, pastries etc on top of healthier foods. I can`t swallow bread. I need a source of protein that isn`t milky. Is there a powder that I can add to savoury foods?

Where can I find clothes to disguise my emaciated body ? All my clothes are hanging off. 

Is there anything anyone would advise me to do that I might not have thought about? Anything.

Thanks

  • Hello Ly, first of all let me say how very sorry I am for your diagnosis. My husband was given the same diagnosis as yourself in April 2018 when he was nearly 51. He has small cell neuroendocrine cancer of the oesophagus too, located near the junction of his stomach. I understand the difficulty in keeping up with the nutrition and putting as many calories into you as possible, it's hard but must be persevered with. Adequate nutrition & hydration is so vital to withstand chemotherapy. My husband's saving grace was that within 2 weeks of being diagnosed, his oesophagus had closed completely and he had to have a feeding tube inserted into his stomach. This enabled him to put on weight (he had gone down to 9st 7, which at 6ft 2 made him look skeletal). Have you thought of making soups, packed with high protein lentils, chicken etc. & blending. Also there are protein powders you can mix with water instead of milk. There are also quite alot of protein bars, drinks etc in health food shops. This can be expensive but I found a good affordable selection for my husband in Quality Save. I don't know what chemo you're on Ly, my husband had 5 cycles of carboplatin & etoposide first. Then he had 10 cycles of radiotherapy to his main tumour. After that he went on a clinical trial which worked for 19 months . He then had some more chemo for 4 cycles but that was not effective. We are now waiting to see if he can access another trial. Try not to lose hope,  as my husband was told initially he could only live for a couple of months. Since that awful day when we received the news, life has been an emotional & physical rollercoaster, but there have been so many pleasures experienced along the way to soften the very darkest of hours. Be your own advocate Ly, use a loud voice to find the best treatment available for this rare cancer & search the internet for trials. You may find something that maintains it for many months & allows you to catch your breath again & enjoy the simple pleasures in life once more. I wish you all the best Ly, don't lose hope.

  • Hi Ly,

    Firstly welcome to Cancer Chat and I'm very sorry to hear everything you're going through. I'm not surprised you are feeling such a range of emotions.

    By all means get the second opinion if you feel it would be useful to do so and if you can.

    Some ways to get extra calories could include making smoothies with water instead of milk, or milk drinks that use alternative milks (if you don't like regular milk). There are also protein powders you can buy to put in drinks to help get extra protein. In addition, regular snacking between meals if you're not already doing this would add some more calories and there are of course both healthy and less healthy options for this. You can also discuss other potential options with your doctor/specialist.

    In terms of your other questions, hopefully you will receive further replies to your post now (my reply will mean a few more people should hopefully see it).

    I hope this forum can offer some small support to you.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Offline in reply to SJ68

    SJ68

    Thank you for your message. It is hard not to get despondent, particularly today when I could not have my second chemo as my white cell count is too low. Hopefully it will be better next week. I am on the same chemo as your husband.

    I have a second opinion appointment in London next week so maybe someone else will be less pessimistic about my prognosis. I do not feel as though I am dying so am refusing to believe the original prognosis.  I am now able to eat and drink normally but am still struggling to gain weight. I am trying the protein powders etc. 

    Your words really helped me and have reinforced my hope and positivity.

    Thank you.