Tumour found. Looking for stories of hope

About a month ago I started noticing that I was feeling my food travel down to my stomach more than I previously had. I have sarcoidosis so initially put it down to this, but after a fortnight of omeprazole having no effect I was scheduled for a scope which happened on Monday. Nurse who did it found something "nasty" right at the junction of stomach and oesophagus and I await biopsy results but she more or less confirmed that it was malignant.

At 39 with two very young kids I've been scouring the Internet for stories of survivors and support to give me some hope. I'm determined to fight this but absolutely terrified.

They say if it hasn't spread there is a chance I will get surgery. My liver function tests have come back normal (and unchanged from my sarcoidosis review 8 weeks ago) and I had a chest x ray done then which didn't show anything. She also had a look in my stomach which was clear, and as these are seemingly the most likely locations for it to spread I'm clinging desperately to these as "good" signs. Would love to hear stories of survivors, especially who had a similar symptoms to mine. I cam still eat whatever I want with no issue other than this uncomfortable feeling when the food is about to enter the stomach.

Thanks in advance (and hello)

19 Replies

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  • Dear gwood, you're in the right place for good advice and the strength derived from hearing from those who have been where you are now and are living testimony to the efficacy of the medical establishment. Given that the signs so far are favourable I sincerely hope that you are a suitable candidate for surgical intervention. This is a massive and life-changing procedure but you will find here a huge community of survivors whose experience - and indeed, very existence - will prove an invaluable resource to you in terms of sound advice and reassurance.

  • Very similar to my own story, except I was only 32, was diagnosed with 18 months post surgery, was diagnosed later than you (I could not eat or drink anything) and I had my children post treatment.

    I was diagnosed over 10 years ago and am still here, treatment was very tough and the surgery even harder but it is worth it not to be always looking over your back.

    You can and will get through this,

    Aoife

  • Opps, I meant that I was diagnosed with sarcoidisis 18 months post surgery.

  • Sarcoidosis and this. What are the chances...

  • It is a relatively common illness that a lot of people have and never find out about - there is a good forum on here about this too. I was thrilled when I found out that I had sarcoidosis as the alternative was far worse.

  • Yeah me too. After the lung biopsy I was fearing the worst. The surgeon's face as he gave me what he thought was bad news was funny. Never been so relieved (yet)

  • For me I found out that I had it at my 18 month post surgery scan, they thought that the oeophageal cancer had metastasized to my liver which would have been very bad for me - they did a biopsy and found it :)

  • Sorry to hear you news. You need to await the full results before making any decisions. Things do change.

    I am now exactly two years post op and doing very well. The surgery (if that is what is offered) is a means to an end. You will recover from it. I was back on my feet a few days after the operation and back home ten after that. I now eat, drink and generally live a better quality of life than I did before my diagnosis. I also weigh the same as when I was fifteen years old and feel great for that.

    It is vital that you try and stay positive and avoid Google!! There are way to many negatives on there. The procedures and techniques employed in this type of surgery change regularly as do the recovery times and experiences.

    This is a great forum to use for information as most on here are survivors of this disease and the surgery that cured them.

    Good luck.

    Bruce

  • Hi gwood80. I had similar symptoms to you and was fortunate to be offered surgery following CT scan and a PET scan. If you are offered it, then the best tip I can give you is to get yourself as fit as possible beforehand as it will help greatly in your recovery and ability to cope, as well as general wellbeing. I used a bike every evening building up time in the weeks prior to the operation. I'm 53 and had my operation in January 2016 with chemo before and after. But at this stage just keep putting one foot in front of the other. Your children will no doubt pull you forward and keep your mind busy. And as brucemillar says, try not to Google too much, just trust in the wonderful professionals working in this field of treatment.

    With best wishes.

  • I had an Ivor Lewis operation six months ago to remove a tumour and lymph nodes from the same area as you have described. Your symptoms match mine too. The procedure went went and the recovery is slow with some up and downs on the way . Everyone is different needless to say but with application and working with the team around you, family and friends you can make a good recovery in many cases. Take it step by step and try not to speculate too much. Better for me anyway to go with the flow of treatment and be optimistic and practical. Try to keep active and do a good bit of walking etc prior to any operation to build up your overall strength. Try to get back on your feet and again exercise as much as you can within reason. Eating is very important so take all the advice you get from Dietician's etc. Best wishes for a successful outcome. John

  • Hi gwood

    Firstly I think most people on this site know exactly how you are feeling. The panic and fear when first diagnosed is horrible. I am 65 and in March 2015 I was diagnosed with a cancer in exactly the same place as yours. I had CT and PET scans as well as a laparoscopy to check for other cancers. I had 9 weeks of chemo. followed by an Ivor Lewis surgery, followed by another 9 weeks of chemo. Yes it was tough but 12 months post op I am feeling well. I have no doubt that there will be days when you will feel very low and pessimistic but whatever treatment you have, take one step at a time and try to be calm and optimistic. It’s something that just has to be got through but there is lots of light at the end of the tunnel. You will come out at the other end feeling well again. One side effect of my treatment is a 3 stone weight loss, I was overweight pre op, so much happier with my appearance. LOL

    All the best,

  • My mum was diagnosed with this cancer last year (Oct/Nov). We all, as a family, feared the worst. She had symptoms for over a year, and due to GP negligence she was mis-diagnosed several times. When we finally found out she had a tumour we were beyond devastated. After many tests, we were lucky enough to learn that she had a squamous cell carcinoma, what i learnt that this was a positive sign (generally less aggressive, not as common). Additionally it had not spread anywhere else and was in the mid to bottom section. She did not need chemotherapy or radio and surgery was considered the best option. At this point she was 6 1/2 stone. The consultant assigned to her was absolutely amazing, he performed the Ivor Lewis over the christmas period. Part key hole (stomach). She was in intensive care over Christmas, and dropped to 6 stone. It was a terrible time. BUT nearly a year on, my mum is 8 stone, she is living a relatively normal life. Is able to eat whatever she wants - although smaller portions. Yes she gets reflux. Pain in her shoulder (they took a rib out). BUT she is here, she didnt need chemo and she is a SURVIVOR. Please dont loose hope. My advice is to read up as much as you can so you are armed with as much as information as possible. If you need any more advice or just want to chat feel free to contact me. I wish all the luck in the world.

    Jules xx

  • Really appreciate the messages folks, and nice to have a place to get some advice and people who unserstand. Still waiting for biopsy results (hopefully tomorrow) but I have an appointment for a ct scan a week today already. And so the process begins.

  • Hi gwood, I am almost 10 years post op and there are people on here who have had there op a lot longer ago than that. Try to stay positive if you can. :)

  • Very similar story to you, I had trouble swallowing, went for a endoscope told i had early stage oesophical cancer. All the usual scans etc. Eventually had the Ivor Lewis op. 2 years ago, no Chemo or Radiotherapy. The pain was well controlled, in fact i would go so far as to say it was not an issue. Home 2 weeks later. Some discomfort along the way,. and a few problems, with scar tissue meeting i couldn't swallow which was ironic considering that was my initial complaint, However i have regular stretches which keeps this under control. I don't have the strength i once had, but I'm perfect weight for the first time in my life, so life is good. I have been very fortunate. My advice is to listen to the medical experts, they are there to help and will do to the best of their ability, if they offer surgery take it. I would be happy to talk with you personally should you wish to have a chat, please do not hesitate to contact me. Take care and remember "one step at a time"

  • The most worrying time is being diagnosed and the unpredictability of the future.

    I am now looking back to those days given a 4% chance of survival, an operation that would give me possibly another 3yrs. Nobody knew then that I would still be here nearly 23yrs later. So much research and improvement has gone on since then. It is a long unpredictable journey but there is a lot of help and support out there for you. So one step at a time and travel with hope, my symptoms were similar to yours.

    Best wishes for the journey sally

  • Hi gwood80 Really know how you are feeling i felt exactly like you 8 years ago But still here to tell the tale ,when diagnosis i felt in a daze,but then realised i had to be positive and get on with life best i could.After surgery district nurse told me to take baby steps and don't look back , look forward to the next month 2 months etc ,best advice ever ,few hiccups on the way but I'm here slim now ,and enjoy life to the full Thankful for every day Take Care and Good Luck Wishes X

  • Thanks for the messages people. Hopefully this thread will provide hope for others who are in the same situation

  • Well my biopsy results came back negative today but showing severe inflammation. Had to get scoped again to repeat as they seem extremely convinced by what they're looking at and surprised they didn't show positive to the extent that it was a consultant who did the procedure this time and I had about 4 nurse specialists in with me too.

    They were so convinced this time last week that I'd come to terms with it and now it's a bit of a roller coaster of emotions I forgot I was capable of experiencing. Ct scan going ahead Thursday and another week wait for the biopsies ahead. I've gone from being told I definitely have cancer to being told there's a small chance I don't.

    Not really sure how to feel. Trying not to build it up too much in my head and keep busy. One things for sure, I'll be taking sedation in case of another repeat

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