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

Auldfarrt
Posted by

Hi,

I was diagnosed at the end of December with cancer, but a further PET scan showed an "abnormal" lymph node in the chest cavity and a further one in the left side of the neck. An operation took place to remove the one in the chest cavity for biopsy purposes. Sure enough, it proved to be cancerous. 

Further diagnosis on Monday told me I was Stage 4, and my treatment option was chemo. I asked about time scales and was told if I don't have Chemo. I've got, on average, 6 months. If I have chemo, which could be up to 8 cycles I could have 12 months, on average. We're in a bit of a quandary as to whether it's worth have in the chemo if I'm going to feel rubbish to 6 months and then have 6 months left, or just to go without the chemo have have 6 months with "just" the cancer to contend with. Trouble is I don't know how the cancer will affect me over the next 6 months.

I'd welcome any views or thoughts. I've yet to discuss things in detail with the oncologist as discussions so far had been with a surgeon.

duggies-girl
Posted by

Hi Auldfarrt 

Dad was diagnosed last April Stage 3 N1  He is 88 and was too frail for treatment so has had nothing other than stents, he also has dementia so chemo was not advised.  He is still here 10 months later having had a very good quality of life up until now.  He has just spent 3 weeks in hospital for pneumonia which culminated a heart attack followed by a mild stroke.

He is now home but rather weak and his memory is shot but still no effects from the cancer.

His oncologist said that chemo would probably make him feel ill and would not cure him and she was right as now I expect him to make it a year in April as long as the pneumonia does not return and his legs get stronger.

I guess we took a chance with dad due to his age, frailty at the time and of course the dementia.  I really did not expect him to still be going strong 10 months later. He is still eating for England.

You have a big decision to make and I hope you get some more answers and what was right for my dad may not be right for you.

I would wait until you see your oncologist because he/she is probably the best one to advise you.

Wishing you well and lots of strength in whatever you decide.

Auldfarrt
Posted by

Thanks Duggies-girl for your story, and I hope your dad carries on doing well. It’s good to hear different approaches. You are right though, we need to speak to the oncologist but until we do our minds can’t keep still.

Nick A
Posted by

Hi there.  Were they suggesting FLOT chemo?  If so, it can have a significant impact so do take that into account.  After four cycles my 10 cm tumour shrank significantly ... also, the averages are just averages; many people with “our” cancer are sadly diagnosed in their late 70s when they have other health issues.  My counsel would be to go for the chemo and start ASAP.  You can read my experience of all this by googling nickscancerdiary ... be strong, ask anything you like.  Nick 

Nick A
Zappaman
Posted by

Sorry to hear about your prognosis and I think you have to talk to your loved ones about this. I know you will have to discuss with the oncologist and ask anything you want. I would also have concerns about quality of life but ultimately it must be your decision. I was fortunate enough to be able to have surgery, but I decided against the chemotherapy and radiotherapy prior to surgery. I am now just over 2 years post surgery and enjoying life differently but still here. I was told that if it returns there is not much they can do, so I will be ready to try the magic beans. Good luck and kind regards Frank.

Amy1304
Posted by

Hi, really sorry to read your story. My Dad (66) was diagnosed in April last year. His PET scan revealed mets on the lungs and spine. He was given 11 months initially (with chemo) he had 7 rounds in the end. It did make him poorly for about 1/3 weeks but if he hadn’t had it he probably wouldn’t be here at the moment. He stopped treatment in September and although having some radiotherapy too on his upper and lower spine he’s doing “ok” some days are better than others and he is in pain. He was offered a second round of chemotherapy — two different kinds both with different side affects but he declined. As you, he thought what the point in being ill for no difference of an outcome. We’re taking each day as it comes. He’s under our local hospice for palliative care. On regular paracetamol and morphine. (Still goes to the pub for a few John smiths) It’s entirely your decision, I would have loved for my dad to try another type just on the chance that it might add a few extra months, but then then it might not have. But it was his Desicion. 

Take care 

Amy 

Little1
Posted by

Hi , 

My dear husband was diagnosed with Stage 4 oesophageal cancer following gastroscopy and CT scan . For some reason we don’t understand he did not have a PET scan but was commenced on 6 cycles of chemotherapy with some reduction in tumour size . The treatment however has made him so ill and tired and he has had no quality of life for 5 months . I doubt he can cope with much more and I’ve already lost the man I married as he is so broken . 

His symptoms are improved and he is still here but not much else . It is a very hard decision to know what to do and may depend on the support you get . We have had so little . 

My best wishes to you . Jane . 

Auldfarrt
Posted by

Hi Jane,

I'm really sorry to read your story, and I feel for you. But this describes my fears. I would rather have 6 months of  relatively normal life than 6 months of not being able to do anything.

Thank you for sharing, and hopefully your husband will pick up and return to himself.

Kindest regards

Martin

Auldfarrt
Posted by

Thanks for your reply Nick. I'm waiting to see the oncologist at the moment so no mention of FLOT chemo has been made. My discussions to fate have all been with a surgeon who can now do nothing. Unfortunately, I do have other health issues which may cloud the situation. One of my main purposes of posting on here was to get different views so that I can ask the oncologist a whole host of questions I may not of otherwise asked.

Thanks again, and all the very best for the future.

Martin

Auldfarrt
Posted by

HI Amy,

Many thanks for your reply. I think your dad's situation is very similar to mine, and I can understand his reluctance to go with further medication. My worry is whether to actually start, but I need to discuss it all with my wife although I know she'll support whatever I decide.

All the very best to you and your dad.

Bird sung
Posted by

Hi, 

you need to calm down and try focus which road and plan ahead your journey. If there is a will there is a way.

how many months average is just an estimate, if Yiu had decide which type of treatment to proceed you have to trust and believe it works 

bird sung

Auldfarrt
Posted by

Hi Bird Sung,

I am quite calm thank you. I am trying to think about what's best for my family and me. I'm aware that averages are made up of an awful lot of time data and the max. and min. could be quite far apart, they could also be quite close.

I'm not making any decisions yet until I've seen the oncologist and had a full and frank discussion with her, with my wife with me. I'll then decide with my wife what the plan should be. 

The treatment may well work, but I'm then still left with the same average of 6 months having undergone 6 months (at least) of feeling absolutely rubbish with my wife worrying about me all the time.

Anyway, thanks for your views and comments.

Struggling12
Posted by

Hi

I have read what you have written and feel so sad.  My partner had oesophagal cancer.  He was diagnosed over a year ago and was given false hope that everything would be ok.  The tumour was very small T1N1M0. He had surgery using an endoscope and radiotherapy but it didn't work and his oncologist said the tumour was too small to treat so he would be monitored.  He could not have major surgery owing to emphysema and fibrosis of the lung.  He died 5 weeks ago as his chest was not strong enough to withstand the radiotherapy and he succumbed to pneumonia.  

I had a good chat with his specialist nurse after he died,  as I had so many questions and she told me that there is no way of knowing how long someone will live.  She's known stage 4 patients who live far longer than the average prediction and patients like my partner who do not.  I know you are aware of statistics.  

The oncologist said he could have chemo when he developed symptoms.  My partner decided he would give it a go and stop if it became too much but in the end it never happened as it was his chest that was the problem.  

My very best wishes for whatever you decide.

Auldfarrt
Posted by

Thank you ever so much for your comments, I can only imagine that it was a struggle for you to relive it all. 

I must admit I'm tending towards trying the first round of chemo to see how I cope. I just want a reasonable quality of life with my wife and family for whatever time I've got left.

Bird sung
Posted by

Go for 2nd and third opinion