Newly diagnosed with oesophageal cancer and the Fear

Hi I was diagnosed with oesophageal cancer last month and I have had a laparoscopy and having an endoscopic ultrasound tomorrow. I wondered if anyone has any ideas how I can help the absolute overwhelming fear that I am experiencing. I am having really bad dreams and hardly sleeping. The smallest mention of cancer on TV sends me into a panic and I am so worried about upsetting my wife and 20 year old son. It seems to never leave my thoughts. 

Parents
  • Hi I am having the same procedure on Wednesday I have found it doesn't matter what anybody says the fear is constantly with you ,I am the same ,I don't switch off at night neither.I think my fear is to find out what stage i am at.Hope you find something to help you .

  • Its all constant fear. I know its not happening to me, but my son, but its constant fear as to what theyre going to say. My son will be told the stage soon as well but hasn't got appointment through yet. Keep googling what I know so far about his tumour size and no spread etc to try and predict - it's driving me mad!

  • We blend everything again at the moment and I add extra calories with sour cream or similar thinned down to the consistency your lovely wife can tolerate .....do not eat bread or similar it expands and blocks up the throat ......

    Protein shakes again thinned down

    Hope this helps a little 

  • She has 3x fresubin a day plus two tins of soup. A pot of custard and blended rice pudding. 
    If we are having a gravy dinner, then I blend hers with extra gravy. 
    haven’t tried cream. She can’t tolerate ice cream which surprised me.

    I did wonder about blending some single cream and cheesecake. 

    im trying to get her to snack more between meals, but that’s a bit alien to her.

    I do wonder if 50% of the weight loss is worry. I’ve lost 2.5kg this month myself. 

  • Extra cream in the rice pud 

    And in the soup would work too

    hubby found things like wotsits and similar snacks that melt in the mouth or now with lots of dips 

    It really is trial and error ...also use full fat everything.....you are doing really well 

  • Worry will do that. When my son was diagnosed I lost about 10lbs over a couple of weeks 

  • The results unfortunately confirmed the tumour is malignant.
    However on a positive note, the CT didn't show any obvious spread of the tumour.

    Next step is a PET scan in the city hospital possibly followed by Lap staging to get much more detail on the tumour and look for any signs of cancer spread.
    Then they look at treatment needed.

    We are taking this news as positive as the CT didn't show anything else.

    I’m feeling happier at this point.

  • That is very good news that theres no spread. I remember the absolute relief at hearing that news myself for my son.

  • Thanks Karren, my imagination had been running wild, so the scan has given me something to grab hold of. 

  • The mind is good at filling in the gaps and making up its own stories.Hopefully, you will have a more peaceful weekend now you have a better idea what you are dealing with. 

  • Yes at least you know SOMETHING, instead of all the 'what if this' 'what if that' scenarios.

  • Hello again, 

    Im back with positive news. My wife had an endoscopy a month ago because she had been having difficulty swallowing. The biopsy came back as cancer.

    We were devastated and in shock for many days.

    The next step was a CAT scan. This was followed up with a PET scan a week ago and a Laparoscopy today.  The news was very slow to come through, but gradually got faster. 

    The swallowing gradually got much harder. Shes currently on prescription liquids only.

    Today we received the full diagnosis immediately after the surgery.
    Stage 1 tumour at the oesophageal/stomach junction.  A 3cm tumour. 

    The plan is curative. Four lots of chemotherapy two weeks apart followed by the operation to remove the tumour.

    We are all very relieved, as from what we had researched, we expected much worse based on her swallowing.

    So today the next part of the journey begins.

    I wanted to share this on here to hopefully give others hope in the early stages of diagnosis.

    My wife is 49 and has never smoked or had much alcohol. Her BMI was spot on. 

    I will post more updates as we progress.. x

Reply
  • Hello again, 

    Im back with positive news. My wife had an endoscopy a month ago because she had been having difficulty swallowing. The biopsy came back as cancer.

    We were devastated and in shock for many days.

    The next step was a CAT scan. This was followed up with a PET scan a week ago and a Laparoscopy today.  The news was very slow to come through, but gradually got faster. 

    The swallowing gradually got much harder. Shes currently on prescription liquids only.

    Today we received the full diagnosis immediately after the surgery.
    Stage 1 tumour at the oesophageal/stomach junction.  A 3cm tumour. 

    The plan is curative. Four lots of chemotherapy two weeks apart followed by the operation to remove the tumour.

    We are all very relieved, as from what we had researched, we expected much worse based on her swallowing.

    So today the next part of the journey begins.

    I wanted to share this on here to hopefully give others hope in the early stages of diagnosis.

    My wife is 49 and has never smoked or had much alcohol. Her BMI was spot on. 

    I will post more updates as we progress.. x

Children
  • Hi Rednax that’s good news. 
    I’m  assuming you’ll get another 4x2 week session of chemo post op too. 
    I was 10.5 months from diagnosis to finishing treatment which was mid August. Now currently sat enjoying the sunshine in Crete 

    it is a long process and yes it’s tough but the sunshine awaits you both if you need something to focus on xx

  • Thank you  enjoy your holiday 

  • Hi Mouser. Good to hear that you are doing well. I am currently sat looking out the open door at a sunny day in Kefalonia. Yes the sun does make a difference. Eating has been a bit of a challenge but had my last treatment 3 weeks ago. So just over 10 months from diagnosis. I need to build up muscle again as lost a lot of weight. The weight is good but the muscle needs to come back. Mind you clothes are getting bigger by the day. Have a good rest of your holiday. 

  • Hi. All of this process seems to take ages when you look forward. But looking back over the last 10 months to now and having my last treatment 3 weeks ago it has gone by very quickly. It is a nasty ride but try to enjoy the good bits when they come. Good to hear your good news

  • Hello all, an update on my wife. Over the past weeks swallowing got harder and harder. First was the soup & custard. Then the prescription drinks, then water. 
    It kind of crept up on us. On Wednesday she started to show signs of dehydration so we went to A&E. 
    She was admitted and immediately put on a drip. Yesterday evening after she stabilised they put a feeding tube in her nose.

    It’s taken all day to get that working as they had trouble with it being blocked or nipped.

    All is well as of now and I left her with the food going in. 

    So, she did her best to get as far as she could before treatment starts, but the tumour was just gradually blocking the way.

    Oncology meeting on Tuesday. I suspect they may keep her in until then. After that we should have a full picture of the chemotherapy plan. 

    the hospital have been amazing!

  • Glad to hear your wife is getting the nutrition she needs now. My sons tumour almost blocked his oesophagus but luckily he somehow managed to eat up to the chemo and then it shrank anyway. Hopefully your wife will get chemo soon & be able to eat again.

  • Hi Karen just thought I would let you know that I got the all clear and currently after a CT scan I am cancer free. Unfortunately eating is a chore now which I hate and I have lost over 4 1/2 stone. However I have stopped looking at all esophageal cancer groups on social media and decided to just eat smaller portions but food that I can stand rather than constantly looking for high protein and calories. Being ruled by food can quite frankly drive you bonkers. Also everyone says how amazing the all clear is however for most of us it’s just the start of a very long journey. I hope all is well with your son and you are finding your own way through this process. xx

  • That's just fantastic Marc! When you think back to last winter when you first posted on here and now being all clear. Did you vocal chords recover? I recall you saying your voice was a bit different after the op. Did you manage all 4 post op chemo sessions? Deans having his 2nd post op chemo soon. He's doing alright thanks, same as you regarding eating, its a chore for him.

    He's got bad dumping syndrome at times and the surgical join has felt tight at times but ok again now - I think its due to the healing process. He's lost about 4 stone since diagnosis but luckily he was overweight and is still around 16 stone whish is ok. He gets low quite often (as I'm sure is the case for everyone in this situation) as he says he's had enough of living and breathing 'cancer' & talking about it all.

    I think I do his head in trying to advise him about being active & what to try eating, and I buy him supplements etc!

    So eating is not good? I know you know this but it supposedly gets better as your body adapts - hoping that will be the case for you.

    I don't blame you coming off the groups on social media - you need your actual life back at some point don't you & it can take over. I look at them every day, just for hope & the positive stories of all the people who had the op 10, 15,  20 odd years ago really. 

    Well, I think I spotted you on FB as may have been in the same FB group!

    You take good care of yourself Marc.x

  • Hi my voice is still rather croaky and I’m due to have tephlon injected into my vocal cords. This should ease them and literally stop them from sticking. My tube is being widened next month so I can swallow a bit better and then they can leave me alone