Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Stage 4 Esophageal Cancer

MyLove
Posted by

Hi 

so sorry to you and your family over your diagnosis. Although you have had some good advice already on here have you joined the incurable group ? These people are so uplifting and prof that some treatments do work my Parnter is incurable and he finds great strength from this group because they know exactly how he feels although he’s not posted on there yet he likes to read other peoples journeys and how they are coming along. He’s told me he’s read on there on many occasions we’re people have been offered palative chemo and then got on a trail because the tumours  have shrunk and living well passed there sell by date has my partner says they put it 

I don’t want to offer you any false hope at all but please join that group and see there stories and ask there advice these people unfortunately and horrendously have all been given the same STAGE 4 prognosis like yourself I hope this helps and you get some great advice of them 

best wishes to you and your family Jane 

Totallylost
Posted by

Hi Jane .I have just read your post and can't believe how similar it is to our story. My husband is 57 with exactly the same diagnosis, timescale ,treatment and prognosis.  We also received no support and also we had a lot of mistakes and let downs by the medical professionals who are supposed to help us at this horrendous time.  I too feel I have already lost my husband  he's sort of gone somewhere else, its awful. I hope if you need to talk you would contact me as we could support each other with our almost identical situations and it sounds from your post that you are struggling as much as I am. My life has collapsed and its not going to come back  xxxx  Could you tell me how old your dear husband is?   Xx. Please somehow try to stay strong xxxxxx

Missy81
Posted by

Hi Auldfarrt

firstly I’m really sorry about your diagnoses. 

I just wanted to say I have witnessed both of my parents go through chemo, both for a stage 4 diagnosis, and the side effects and how the treatment effected each of them were really quite different.

My dear dad, it hit him hard and he felt sick and poorly a lot of the time, but my mum on the other hand had really quite minimal side effects and could really go about her day to day ice with little impact.

I was thinking it may not have to be an all or nothing approach, perhaps a middle ground would be to give chemo a go if you wanted to, and if the side effects are so that it out weighs your quality of life you could decide to stop. Just a suggestion for you. 

Whatever you decide though, I wish you well xx

Auldfarrt
Posted by

Thanks Missy 81,

I've my first meeting with the oncologist on Thursday afternoon, and I was just re-reading some of the letters I've had from the various doctors. The type of chemo. is palliative chemotherapy which apparently is designed to easy my remaining time, and possibly extend it. I've come to accept the situation and have decided, along with my wife, that quality of life (what remains of it) is more important than the length of it. 

I may think about one round of chemo. just to see the impact on me, but as I understand things the impact can grow with the more chemo. you have. Another factor coming into play is where I want to die, or indeed where my wife would prefer me to die. Personally I'd rather die at home, that doesn't cause to much upset, than in a hospital ward somewhere.

Sorry to be so frank, but I'm afraid that's currently where I'm at.

I really appreciate you taking the time to write, and I hope your mum and dad are progressing well.

Thanks again.

Struggling12
Posted by

Hi totally lost

I am so sorry to read about your husband's diagnosis.  I know exactly how you feel.  My partner died 6 weeks ago from complications after radiotherapy.  My life has collapsed too. I know exactly what you mean about being let down by medical professionals.  

My partner had a ct scan in October 17 as he had chest problems.  A dark area showed up on his oesophagus so he was referred to a consultant upper gi surgeon.  My partner had a subtotal oesophagectomy 11 years ago and was told the dark area was from that and probably nothing to worry about.  Arranged endoscopy just as a precaution.  After endoscopy he was told no cancer was present and they'd taken routine biopsies but everything was ok.  The surgeon shook his hand. SIX weeks later he received an urgent letter from the hospital.  A different surgeon broke the news that cancer was present.  It wasn't a recurrence.  It was a primary cancer.  Anyway not to worry as it was only 1cm, had been there a long time and could be treated.  Never had an explanation as to why it took six weeks. The delay meant treatment ran into the Christmas/New year period.  More delay.  He had endoscopal resection surgery followed by radiotherapy TWO MONTHS  later.  Getting to the hospital was horrendous as that was the start of the beast from the east.  Radiotherapy did not get rid of the tumour, despite being told "everything will be fine and not to worry" and "it's just a precaution." Then a different surgeon told us he had a year to live.  The tumour was too small to treat and would be monitored.  It was absolutely horrendous and it was like being punched in the stomach.  I know exactly how you feel.  It's a combination of disbelief, panic, anger and despair.  I wanted to curl into a ball. My partner went into a deep depression and never recovered.  I will never forgive that surgeon.  The specialist nurse was horrified and couldn't understand why he had said that as prognosis is usually given at a later stage if THE PATIENT ASKS. She said everyone is different and even Stage 4 can survive a lot longer than expected. I know now the prognosis was statistical and not based on my partner's personal cancer..  A personal prognosis gave him far more than a year but I can't tell him as he's gone.  The radiotherapy destroyed his weak chest and he caught pneumonia. He only lived 6 months. I wish he'd never had that ct scan.  My partner also said the same.

I am so sorry again for you both.  The only advice I can give you is to ask lots of questions and challenge if necessary.  Write things down.  If things aren't clear or dont make sense then ask.   Ring the specialist nurse with any concerns.  Don't put anything off. 

I send you both my very best wishes. Xxxxx

Gibbo9
Posted by

Hi Aulldfartt,

I am in the horrid situation as yoursel.

Last Tuesday I was told that I will be having a scan in 3 months time with a view to buying me some more time . I have bone mets.

I have struggled for the past week emotionally.

I managed an hours sleep last night, am trying to knock the alcohol on the head, I have been operated on ,(Ivor Lewis last August ) live on my own but I do have kids.

How are you doing emotionally? 

I feel incredibly depressed most of the time at the moment.

Kind regards. 

Pete G

Gibbo9
Posted by

Hi struggling 12.

Sorry, I wasn't being ignorant , I was having what I assume is a panic attack and lost track,

So sorry to hear about your partner.

Pete G

Struggling12
Posted by

Hi Pete

That's fine.  No problem.  I am so sorry to read about your diagnosis.  If you are on your own it is much worse.  The Macmillan helpline may be an option for you.  I felt I was going mad with unanswered questions so I rang them up.  I was very impressed.  They are kind, patient and helpful and they have specialist nurses on hand if  you have concerns or you can just talk about how you are feeling depressed and need support.  They have all the time in the world for you and are available 7 days a week.  

Best wishes

Gibbo9
Posted by

Thank you

Totallylost
Posted by

Hi striggling12  I'm sorry I haven't managed to reply to your heartbreaking message before now. My husband is not good at all and as I'm very ill myself I've been unable to get round to doing anything at all apart from look after the two of us the best I can.   I can't begin to tell you how I felt reading your story.it was like all the breath being taken out of me.  I'll say I'm sorry but you've heard it a thousand times and although well meant it doesn't really help at all.   I'm gutted for you   I think you can just talk one to one if you would like?  I'm not sure cos I'm new on here. I'd love to talk and try to offer comfort maybe to each other?    If you don't that's fine I completely understand xx xxxxxxxx.  All my love xxxxx

Struggling12
Posted by

Hi Totallylost

Thank you for getting back in touch.  I feel so sad when I read your posts.  I know exactly what you are going through and that you feel so helpless. It's dreadful.

I'm not sure about the one to one either or how you do it.   By all means  I will support you in any way I can.  Xxxx

Struggling12
Posted by

Hi Totallylost

I received your request but don't know if I responded correctly.  I accepted but got rather confused with it all so don't know if I've connected or not.

Xxx

Totallylost
Posted by

Hi struggling12   I've messaged you    click on the envelope icon I think !!?? 

Auldfarrt
Posted by

Hi Pete,

I'm sorry to hear your about your struggles, I truly am. 

I think, maybe, I'm a little luckier in that I have my wife with me and currently my son is here too whilst he sets up his business. One of my daughter's lives in the village with her family too. So regarding emotional support, it's there for me when I need it.

I'll be honest, the big thing for me at the moment is still trying to believe it's really happening. Other than an occasional tightening feeling when eating, not all the time and I can eat normally, I don't really have any symptoms. I generally feel OK and normal, although as I said back up the list of messages, I've not started any treatment yet. 

As some one else said, ring the Macmillan nurses they are "bloody" good.

Take care.

Kindest regards

Martin

Caroline6512
Posted by

Hi Martin

Please keep us posted with your decision. My Dad is in the same boat. He’s had his biopsy today and waits for the team to discuss his case to let him know what treatment they will offer. Apparently the tumour looks to be about 5cm long but isn’t blocking too much of his oesophagus at the moment so he can eat ok

I think it’s stage 4 too as he has some spread to his lungs. He gets out of breath and is hoping if he has treatment that it will relieve those symptoms but again if the treatment makes him feel worse he’s wondering if it’s worth it 

I personally think it’s worth giving it a go as you may tolerate it well.