New and worried

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Good morning all, my partner 48 has just been diagnosed with oesophageal cancer, we are not certain on his staging as yet as he needs to have a PET scan to see if it's gone into any more of his lymph nodes, currently in one that is near his tumor. Obviously I want to help him any way I can and be as optimistic as possible. I'm praying for a good prognosis for him. Thank you for reading 

  • You've done the right thing reaching out here there's so much support and information. 

    Andy my husband was diagnosed Nov 23 it was also in one lymph node he's has flot chemo precaurgery and had a scan which showed the tumour had shrunk and the lymph node was no longer a problem. He's now awaiting a date for surgery. 

    I hope you get positive news very soon . 

    Sending hugs

    Vonn

  • Hi von, 

    Thank you for the reply and I'm so sorry to hear you and your husband are also on this journey.

    Great news that andys tumor has shrunk and I'm sending much love and hope for a smooth surgery for him and a speedy recovery.

    This gives me hope that marks tumor is curable and treatment will be successful thank you 

    Much love 

    Jo

  • Hi Whitesdrmon,

    Sorry to hear that you and your partner have joined this club that none of us want to be members of. The PET scan should tell your doctors what they need to know regarding treatment options so I know that waiting for the results of that is a very challenging time. I was diagnosed with OG cancer in Oct 23. My PET scan showed no spread of the cancer to other organs and this was confirmed by a laparoscopy. I was put on an 8 week course of FLOT chemo ending on 31st Jan and had surgery 4 weeks later to remove what was left of my tumour ( plus the lower section of my oesophagus and top third of my stomach). The treatment and surgery have been the most difficult things I have ever had to go through but, although recovery is going to be long and slow, I am out the other side and cancer free. They will give me a course of post-op chemo just to be sure but, by the end of the summer, I’m hoping that my life will be getting back to some sort of normality again. Hopefully your partner will be offered a similar “curative pathway” once the scan results come back. I wish you all the best of luck….CB

  • Thank you for yoir reply and congratulations on now being cancer free, I hope the rest of your recovery is speedy and you fulfill all your dreams. Yes waiting on the scan is an anxious time, we have been told it hasnt spread anywhere else IE lungs and kidneys so just need confirmation that it's not spread to more lymph nodes. These messages are filling me with hope that he can be cured and live a long life. Many blessings to you and may you continue on the journey of full health. 

    Hugs Jo 

  • My husband had Barrett’s from when he was 18years old, summer 23 he had his usual gastroscope every 12 months then we got a call to go for checks, PET scan and MRI and CT scans then it got to a MDT meeting to discuss his case, 

    They had found a tumor so he had another gastroscope to remove it in September 2023, We got called back to see the consultant our life changed that day last October with a decision to go for Major Surgery of 9hrs to treat the oesophageal cancer.

    He had the surgery early December 2023 the surgery went well they had the break a rib to gain more room and deflate a lung for the Ivor Lewis procedure which we were advised in all consultations that this would be the case. 

    After the surgery he spent a few days in critical care which was hard to see him so poorly but he got the most amazing care at Liverpool Royal hospital his consultant was amazing. 
    he did have some complications post operation but he got the care to make him feel better.

    He did get moved to the ward and was there for 7 weeks, don’t be worried he had a DVT and chest infections which is common after the surgery so he was in hospital for a little longer. 

    Anyone having this surgery it’s life changing, eating small portions a side plate is the size of your meals and you have to have a high calorie diet, no fizzy drinks, full fat milk. Anyone having this operation has dietician support for five years and you have reviews with your consultant for 5 years. 
    you are not alone! I have had to learn so much but honestly it’s not scary and to know my husband is cancer free it’s a positive outcome 

    They removed the diseased oesophagus and 28 lymph node’s and it hadn’t spread to the lymph nodes. 

    He was advised he would lose weight he’s lost about 2 stone but is still trying to put weight on but has stayed brother same.

    The recovery is key we were advised it would be 12-18 months before he be back to feeling back to himself, it’s all about taking each day as it comes as you will have good days and bad it’s nothing to be worried about.

    he has to have a sleep in the afternoon for a couple of hours to rest his stomach muscles this is also important for the recovery.

    i have learned so much and can understand any anxiety around this diagnosis but the operation is the only way to be sure your cancer free, Take the advice from your consultant and the Upper GI nursing team and dietitian because they really helped us.

    We also got a information pack from MacMillan while he was in hospital with 2 cards in the pack saying I can only have small portions when your going out for a meal and access to a bathroom is important.

    our Pharmacist was also fantastic advised us that prescriptions should be free at your doctors you can get a medical exemption form signed by your GP as you will be classed as a cancer patient for a long time even after the operation, my husband now has free prescriptions for 5 years.

    There is a lot of  advice to help don’t be frightened to ask.