Just started FLOT Chemo for GOJ Esophagus cancer, then Ivor Lewis operation to remove stomach , anyone going through this happy to connect

I am 60 Year old Father of 2 and a grandfather of 2 , married for 37 years , and recently retired. Living in Wickford Area Essex. I have previously had no major Health Problems , being fit and active playing golf  and regular fitness sessions at local gym.

In April 2024 following an endoscopy it was identified i may have a malignant tumor at GOJ junction. This was confirmed on 7th May following further endoscopy., various other tests and scans including PET, CT , and laparoscopy Diagnosed T2/3 Stage poss. small spread to nearby lymph nodes ,  fortunately not to other areas of body  and localized.

I have just started a 4 two week cycle of FLOT chemotherapy 24Th June, plan then to have an Ivor Lewis Procedure , to remove all of stomach and then another 4 cycles of Chemo.

  • Hello Tinker7

    I'm sorry to hear about your diagnosis. It's understandably a difficult time for you and natural that you have some questions ahead of your treatment starting. 

    I can see that  shared in a recent post that he has been through the Ivor Lewis procedure after a T3 diagnosis. Hopefully you can connect with him. You might also want to have a look through this thread where quite a few members have shared their experience of treatment for oesophageal cancer. I'm sure if you post there you will be able to chat with others who have experience with this treatment. You can also use the search function at the top of the page to look for the terms FLOT or Ivor Lewis where you can see other posts where these treatments have been mentioned. 

    If you'd like to talk with our nurses at any point, you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I know they will be happy to listen and offer any advice and support they can. 

    I hope that things progress well with your treatment. Keep in touch and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi Tinker7

    How’s treatment going?

    I’m not going through this myself. My my dad (67) who lives in the Rayleigh area. Has just had this diagnosis. 
    we are going to the hospital next week to see the consultant and discuss the PET scan results further. He has been told that he need a laparoscopy to stage the cancer: we know that it’s GOJ and that there is lymph node involvement. 

    I just wanted to reach out and let you know that someone else and his family are going through the same scary journey xx 

  • Offline in reply to H04

    Hello

    Thank you for your kind response 

    I'm sorry to hear that your Dad has been diagnosed also with this . It's scary for the family also .

    I had a laproscopy , all the surgery etc is done at a hospital , and they were very good .

    It sounds like your dad is starting and is just behind a similar journey to me, and under same hospitals.

    So if you yourDad or anyone in your family wants to ask anything at anytime please reach out.

    My profile gives you more info about me .

    Mark

  • Offline in reply to TINKER7

    It sounds like you have lots of support with your family and you’re all looking after each other. 

    Yes it sounds like dads treatment journey is just behind yours.We are going to hospital  Monday and then again Thursday for the pre op assessment and fitness test.

    From diagnosis to this point they have all been fabulous and it all been go go go! But still feels like such a long wait and the the unknown part is the hardest bit. 

    Thank you for your offer to help with any questions, and please feel free to reach out if you or your family need anything. Sometimes the best support comes from people you don’t even know but are walking down the same path  ️

    are you having your chemo - how are you finding it?  

    Hazel xx 

  • Offline in reply to H04

    Hello, yes having chemo , nearly end of  first cycle. The team there are fantastic and supportive.

    Early days but maim symptoms are and were, tiredness, sensitive teeth, fatigue and stomach cramps , which tbh , are the worst for me but everyone is diferent

    i would think if your Dad is going to have the FLOT chemo like me , they will put a picc line in , which stays with him during chemo .

    The laproscopy your dad will have is around an hour procedure , but your dad will have anesthetic,  and will not know much  about it 

    It's a day case..

    Not sure how your dad is coping hearing about life changing news, .To me I feel on a roller coaster , and just taking one day at a time , and one phase at a time.Otherwise it will be hard to stay positive.

    But thinking positive caught early long road ahead but there is hope 

    Also support of family and friends vital , ur dad should seek out any support at any time, to help him get through.

    Just remember poss only 10.months out of your life .

    I really meant it as we have similar diagnosis , and same health authority  you your dad  and family can reach out anytime.

    Sometimes it helps to have more understanding of the unknown, and what to expect.

    Weird also both have it at GOJ junction , mine more at stomach end , it was discovered during Laproscopy .

    I can at least share my experiences as slightly ahead.

    I am under cancer team, Chemo and most scans done  at one hospital., and all surgery done at another hospital.

    Mark

  • Offline in reply to TINKER7

    Hi Mark,

    how are things your end?

     
    dad had consultant appt today, So, it hasn’t spread to any other major organs thankfully. However, the paratracheal lymph node involvement is a worry to them because of the surgery.

    They have said that we just need to just take it one step at a time as every result has more than one option.


    They want to do a laparoscopy to make sure it hasn’t spread to the peritoneum (will get results same day). Then he can start having FLOT chemo via PICC line. 

    Hazel xx 

  • Offline in reply to H04

    Hello

    If it helps I was told that although not spread to other organs, may be poss it is in nearby lymph node, even after  laproscopy they cannt be sure, which is why as  a precaution we have chemo.

    I was told the main reason for laproscooy is to help the surgeons understand more the layout  of the body internally as everyone's diferent .

    Following the laproscooy they changed the type  of my  the operation to removing the stomach.

    in terms of what to expect time wise , within à month of laproscooy , i had seen oncologist, hsd picc line and ecg , and started chemo.

    Just got home from second cycle today.

    The good news from your dad's point of view they will operate ,as only 25 to 30 %, of people in UK with this cancer can have the operation.

    Let me know if you have any questions anytime 

    I try and just take each pahse and one day at a time, and try not to look to far ahead.

    Mark

  • Sorry for typo  errors bit tired from today 

  • Offline in reply to TINKER7

    Hi Mark, 

    your info has been so helpful, thank you for sharing your journey so far with me. 

    yes, we are also trying to take each part at a time otherwise it’s so overwhelming and your mind ends up running away with you. 

    I hope the 2nd cycle of chemo is kind to you, rest up and drink plenty ….. Dad told me earlier to  *** off with my nagging. 

    Hazel xx 

  • Offline in reply to H04

    It's good to stay connected , anytime please message. Happy to share my experience as your dad is so close to my journey, and under same hospitals.