Stage 4 Oesophageal Cancer

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As a family, we have been given the devastating news that our dad has been diagnosed with stage 4 Oesophageal Cancer. Surgery is not an option. Immunotherapy is not an option and we've been told the prognosis is months. This is a massive heartbreak for our family as our dad is currently fit and well and you'd have never guessed he has a deadly tumour growing inside him. Unfortunately the care he has been given so far is appalling. His first chemotherapy session has been constantly delayed due to some test results not being back. These tests were delayed due to a careless human error of someone not ticking the correct box and sending them off in time. No one has took responsibility of this and we've had to chase them up for an update. The only time we hear from them, is when ring them. When you tell someone that they have months to live, how can you allow 6 weeks to pass without treatment?! Me, my mum and sister all work for the hospital he's at so it's a kick in teeth. We've had to go down the PALS/complaints route. A formal investigation is currently happening and we've finally got a date this Friday for his first chemo session. However, all the chemo in the world wont change the prognosis and i cant bear the thought of him not being here this time next year. My dad is the eternal optimist but behind closed doors he's been breaking down over how he wont see his grandkids grow up and how scared he is. I feel numb with emotion if that's even possible. How are people expected to carry on with life whilst coping with this?

  • Palladium

    I am so sorry that this post has gone unanswered for so long, and to read that your Dad has stage 4 OC.

    I think it is a terrible thing when basic things not being done lead to so much pain and upset, delay caused unnecessarily and all at a time when your whole family are already reeling from shock and dealing with heartbreak. 

    I remember how I felt when my husband was first diagnosed, we were told that he could not have surgery or immunotherapy, and was given a few months to live...my world crashed as did that of our daughters and his Mum and Brother, but something happened, after 5 chemo treatment he was re tested and immuno treatment was now possible, I still don't know how he went from HER2 Negative to HER2 positive but it happened. 

    How are you all at the moment, it has been a while since you posted, did Dad get his Chemo?

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thankyou for your reply Lowe

    Hearing some positive stories is one of the things keeping us hopeful at the moment

    It's definitely been a frustrating hard few months where it seems everything is against us. 

    He had his first chemo session last week and so far so good, he's not had any bad side effects so seems to be responding well. I just hope we have good news whenever he has his next scan and we can see that the tumour has shrunk 

    How did your husband respond to the immunotherapy if you don't mind me asking?

    Thanks

    Palladium

  • My Husband Dal, was diagnosed with Stage 4 Oesophageal Cancer with secondaries in his lung, liver and lymph nodes T3N3M1 GOJ, he was given 4 months prognosis without treatment and 12 months with, at the beginning of May 2020. 

    In July of 2020 we were informed that Dal was in fact HER2 Positive and could now change the treatment that he was on to include Herceptin, he has a Trastuzumab FOLFOX mix treatment 

    29th June 2021 update - Oncologist called Dal, reporting on scan which was undertaken on 25th June, she confirms, there is no identifiable disease and no discernible issues. Dal will continue on immunotherapy and chemotherapy treatment fortnightly and have quarterly scans,

    Today, Dal has gone for his 57th treatment, he is working from home 3 days a week and carries out holistic healing on the week when he does not have treatment ... we call him the Magician Heart eyes

    We have a blog you can read if you would like to know more, just click on our picture and click the link in my profile, you will have to scroll to the bottom and work your way up to read all of it though!

    I do know how those first few month can be, how differently we perceive things after our loved one is diagnosed with an incurable illness, personally once we got through the other side of the shock and Dal started to get back to his normal self eating wise, we just starting living. At one point we stopped making plans, as if our life was over, but we have planned and seen so much in the past two years. We have been on holiday abroad and in the UK, we took up camping, watched our youngest get married and were introduced to our new grand-baby, life is for the living, whilst he has the ability to do, we are going to do, focus on the now, not on the when and what if's

    I do hope your Dad responds well to the treatment, remains positive and kicks ass. 

    Lowe' 

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • I'm so sorry to read about your dad, I just wanted to say that I can really relate to this. My profile explains the situation more but after being told he was cancer free last April, oesophagael cancer has returned for my dad and this time it has spread to his lymph nodes. He will find out in a couple of weeks if chemo is an option. He has asked for them to not tell him a time frame and he remains quite positive (he says! always hard to tell how he is actually feeling). 

    I am struggling to carry on and then I feel bad even thinking that because I can't even imagine how my dad is feeling. These forums have helped me a lot, it helps to read others experiences and there are positive stories out there.

    Sending love, here if you need to chat