Recent diagnosis

Hi,

I'm sorry to hear about your husband, i understand what a tough time you are all going through. My dad was diagnosed with stage 4 oesophageal cancer in 2023 and we were told he has just 6 months. He was underweight by this time as he had basically stopped eating as everything was getting stuck. My dad had said he did not want to have treatment and just wanted to enjoy the remaining time he had left. We respected his decision but held on to a tiny bit of hope that he may change his mind and give treatment a try. Treatment was not to cure him but to give him a better quality of his remaining life. However, he then changed his mind and decided to give chemo a try. And he stayed with us for another 2 years! The chemo allowed the tumour to shrink and he was able to eat good again, which I believe helped him stay with us for another 2 years, as well as his positive mindset and his strength and determination to carry on with normal life and continuing to go to work everyday. The chemo my dad initially started on wasn’t as strong but ultimately stopped working after which we gave immunotherapy a try. That also worked to an extent but then we tried the stronger chemo, which was brutal, and we had to take him off the chemo as it was doing more harm than good. We had never seen my dad this poorly. What’s your husbands view? He should go with what he thinks is best for him. Also get all the support and advice from your oncology team and speak to MacMillan nurses, they were an immense help for us during such a difficult time. Maybe you could even look in to trials at this point. I wish you well x

Thank you for your reply. Dave was on a morphine syringe driver untill he had the stent put in. He's now on slow release morphine tablets but for the last couple of days his pain has been lot worse than before. The oramorph & paracetamol he was given for break through pain isn't touching it. His palliative nurse is due to call in today so I will have to mention this to her.

We have asked to be referred to the oncologist as to whether its worth him trying the chemo. He hasn't been offered any other type of treatment as the cancer has already spread to the lymphnodes in his neck. The impression We got from the GI nurse is that it wont be worth having the chemo. 

Its a truly horrible disease & a lot more common than people realise. My mum died of Oesophageal cancer in 2011 & treatments dont seem to have come any further on than when she had it. Mum had chemotherapy & radiotherapy & lasted 17 months after her treatment. 

Thank you for sharing that. I’m so sorry to hear Dave’s pain has worsened, hopefully the palliative nurse will be able to adjust his meds today. It’s heartbreaking to watch someone you love in pain.

I understand how hard the chemo decision is. When my dad was diagnosed, the cancer had already spread to his lymph nodes too, so I know how that news can feel. But treatment options can vary so much depending on things like overall health, tumour type, and how someone is coping physically and mentally.

It’s good that you’ve asked for a referral to the oncologist, that conversation might help give a clearer picture of whether chemo or any other approach could help, even just with comfort or quality of life.

It’s also so hard that you’ve already lived through this once with your mum. You’re right, it’s a horrible disease and doesn’t seem to get the attention or progress it deserves. You’re carrying so much, and I hope you’re able to get the support you need too. x

I’m sorry you are in this horrible situation, decisions are so hard when the options are both really challenging.

My husband had OC in 2008 and his prognosis was bleak, he was weak (he lost about 5 stone and had a day when he couldn’t even swallow his saliva) but he was determined to fight and he’s still here today.

My heart goes out to you, I really just wanted to say only the two of you can make the decision about treatment, the medics can inform and advise you but it’s up to you which way to go.  x

He was constantly spitting up horrible frothy slime until he had the stent . He couldn't sleep in a bed for 7 wks  before the stent was done because he would wake up choking after 10mins or so..plus the pain in his chest area was so bad when he tried to lie down.

We bought a hospital chair & he dozed sitting upright in that. 

The palliative nurse has supplied a bed rest so he can sleep propped up in bed now.

Our GP has been awful...not sending prescriptions over to pharmacy when needed. Basically making me jump through hoops to get his meds. The palliative nurse said he is on the gold standard care plan & they shouldn't be making things so difficult for us & if we continue to have problems with them to just ring her & she will send his meds over.

Hi, it's been a long time since I've here. 

2020 I was diagnosed with stage four oesophageal cancer which had spread to lymph nodes. I was offered chemo to help with swallowing and prolong my life. I was feeling ok at the time, tired and only able to eat pea sized bites. I was very lucky, the chemo worked and then I was put on more chemo and radiotherapy. My decision to take chemo was easy as our son had died only two years before and I didn't want our children to have to cope with another death so soon. Starting chemo doesn't mean you have to finish it, if it's too bad you can stop, I felt so much worse for a few months but I could eat, I was exhausted and kept getting infections in my feeding tube. It's five years now and my scan in August was clear, I know I'm one of the lucky five percent and I don't know if giving hope to others is helpful or not. I've had fantastic oncologists and nurses but they don't know exactly what the treatment can achieve, they know the usual outcome but everybody's cancer is slightly different as is how there body reacts to treatment.