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.

Newly diagnosed Oesophagus cancer

Runninglady
Posted by

Good Afternoon,

I'm hoping you'll be able to help with my lovely Mum's newly diagnosed cancer.


Mum has had trouble swallowing for many years, but had it stretched a few time no problem and managed fine.


However this year the swallowing became worse and a burning feeling in her stomach, after a few mouthfuls of food Mum felt full up. 


Dr's prescribed gaviscon and said it was heartburn. We have been with the same Dr years so he knew us well, and we trusted him. 


A few weeks later symptoms didn't improve so the Dr arranged for Mum to see the gastro team at the hospital. 

Mum was advised to have double cream, and fattening foods to help keep the weight up.


Weeks later no improvement so Mum went back to the Dr, he started her on antibiotics as he thought a fungus could be causing the burning pain.


A follow up appointment came at the gastro hospital. 

Mum had lost weight so she started on ensure milkshakes to add calories.

Mum wrote all her symptoms down and explained about the full feeling. 


Mum continued drinking the milkshakes, but the weight loss continued.

Mum was now bringing up all her food, and feeling very weak.


We weren't able to get a face to face appointment with the Dr but a telephone call.

He arranged for Mum to be seen by the gastro team at the end of October.


Mid September Mum was so sick and very worried. 

We brought her into A&E as she looked terrible, and we were all worried.

They sent her home with more antibiotics and said an appointment with the gastro team was on the system.


That week I spoke to the gastro team secretary and explained Mums symptoms. 

She was asked to come in the next day.

A barium swallow was booked that week.


So the swallow showed a problem, and the next day an endoscopy was carried out.

A 6cm tumor was discovered in Mum's gullet. 


How did all these symptoms not ring alarm bells for the Dr's????


We seen the consultant Friday and he said surgery is not an option? 


Has anyone else had this happen?? 


Please help.


Eileen 

HCLS
Posted by

Hello Eileen

My dad went back and forward to the doctors for 6 months before they gave him an endoscopy.


I think awareness of this type of cancer has increased but unfortunately not everywhere / one.


I am so sorry you are in this position.


Take care


Hannah x x

Runninglady
Posted by

Thank you Hannah x

Silverfox65
Posted by

Hi Eileen

I'm sorry to hear of your Mum's condition.


I had a similar issue in that the GP and initial specialists couldn't find any problem...however finally I had a tumour too.


What is not clear is how can the consultant advise no surgery when it seems your mum hasnt had a CT or PET scan yet? That's standard for tumour staging?


Hope this helps


Best Wishes

Peter x

Runninglady
Posted by

Thank you for replying Peter.

I just read over my message and yes, I forgot to add we had the CT scan last Wednesday.


The results showed the cancer is only in Mum's Oesophagus which is good news. 


Peter may I ask how you are? 


My Mum is loosing weight, but cares so much about us all.


Thank you


Eileen 

Silverfox65
Posted by

Hi Eileen

It's good that it's contained to your mums Oesophagus. The doctors/ surgeon will still need to confirm formal staging though... And my experience is that a PET scan will be needed.


I am 52 years old. Was diagnosed in April and am 4 weeks post op. So waiting for my next round of cancer. I was diagnosed at stage 3 and so operable.


My recovery is on track and im feeling stronger everyday. 


Most important thing for your mum is keep eating ( if small amounts then make sure they are full of calories/ nutrients)...and try to keep fit...i know its tough but worth it .


Feel free to ask me anything anytime.


Good luck

Kazzy.B
Posted by

I am so sorry that your mum and family have had to endure this,it’s shocking,my dad had trouble swallowing in April,we went to the Drs and the Dr straight away booked him in for an appointment to have an endoscopy,so within weeks we found out he had a 10cm tumour on his gullet,he had six weeks of palliative radiotherapy,but now there is no treatment,just pain relief,six months on he is still fighting,there are good days and not so good days,he is under the local hospice and they have been wonderful,he has had counselling from the hospice psychologist to try and accept the diagnosis and this has helped him a lot,please get as much help as you can.Even though we do not have a positive outcome,we are all in a more accepting and peaceful place due to the help of the hospice.Thinking of you at this sad and difficult time.Xx

Runninglady
Posted by

Thank you so much Kazzy.B

I'm sorry to hear about your Dad, you make the most of every minute. 

I hope like you say he's pain free and at peace with what's going on.


Thank you


Eileen 

Runninglady
Posted by

Thank you Silverfox65

It's lovely to hear your feeling stronger every day. 


I hope your treatment continues without any problems and you enjoy eating again.


Ah, Mum is not managing to eat any foods at all. We've tried blending, baby foods, you name it.....


Soup with absolutely no lumps stays down but that's all. 

Ensure milkshakes are still staying down.

Mum loves her tricycle, and goes out daily. The children love to see her about she waves and rings the bell. Xx

Jelliott
Posted by

Hi Running lady! 

So sorry to hear about your experiences. My husband is also suffering from incurable oesophagus cancer which has spread to the lymph nodes. He had a persistent cough which was misdiagnosed. Chest X-ray came back clear and despite numerous visits to GP took over a year before an endoscope revealed the problem. He had chemo in March which couldn’t be completed due to an infection. Over the Summer he was ok but eventually swallowing became a major issue and he could only swallow soups and liquids. A stent was fitted which although not a pleasant experience has made a tremendous difference and he is now eating well. He has just started a second course of chemo...docetaxol. Last week was very hard, no energy, sleeping a lot, irritable, but much better this week and preparing for round two. Would be interested to hear how others have dealt with docetaxol? Strongly recommend the stent and really sympathise with others coping with this horrendous experience!

Runninglady
Posted by

Jelliott, 

Thank you so for the reply.

I'm pleased your husband is to eat since the stent was fitted.


All the leaflets say try and eat really well as during treatment you'll need as much energy as possible to fight. 


But Mum can only manage liquids.


I'm sorry to hear your husbands treatment was stopped due to infection, but I'm pleased to hear he's now back on it.


Thank you for the information about the stent. 

Did it take ok?? Did he have much pain??


Thank you 

Eileen 

Jelliott
Posted by

Hi Eileen,

The procedure to have the stent fitted was not pleasant but has made such a difference to his eating. Prior to the procedure he could only take soup , yogurt or fortisips. Now he is eating everything except bread and chewy meat. He enjoys a chicken dinner and anything with mince or fish so at least we can eat out again. It is definitely worth having. I hope your mum is able to have it. Also the recovery was quick. He was in hospital overnight and then gradually became more confident and tried different foods. We are now approaching chemo number two out of four and having a good week. Last week was very difficult due to fatigue. He is coping well but I am struggling knowing that he cannot be cured and time is short. I would love to hear how others cope as although I am keeping busy and trying to be brave I am very emotional and can’t talk to professionals as I just get upset. This is such a terrible experience and I hope you are managing to deal with your situation. I have only just become involved in this chat line but find writing easier than talking so please reply if anyone has any advice, Good luck Eileen and keep busy and smiling.

Runninglady
Posted by

Jelliott, 

Thank you for sharing, as you can imagine we are still getting through the information given by the hospital. 

We had a phone call today, Mum has an appointment next Wednesday to meet another consultant to discuss the next options.

Poor Mum had a bad day, feeling so weak, and thinking she won't get better. 
She is such a strong lady I've never heard her say things like this. 
I just hope we can get treatment started soon.

Mum's weight continues to drop. Xxx
shine27
Posted by

I yHi,

Runninglady

Sorry to hear about your mum,my mum is the same her oc is only in osophageos but is inoperable.

My mum was diagnosed in April T3n1m0.

Since then she has had a stent fitted no problems at all with this and can now eat anything so don’t read to much into all the negative comments as it has been a godsend for my mum as she couldn’t keep anything down. She had palliative radio but couldn’t have chemo due to poor kidney function, oh and she has a feeding tube which she has also had since around May.

I can honestly say my mum is a different person now sadly she will never be cured but her quality of life now is so much better,I know at some point she this is all going to change but I am trying to stay positive for the time being.

I hope they can help your mum to feel better soon as it is heartbreaking watching them grow weaker by the day

.

Hugs to you and your mum shine27 xxxx

Robby
Posted by

Hi Silverfox65,

I am glad you are recovering post op, I think that I can resonate clearly with you. We are of similar age I am 50 I was diagnosed With an oesophageal cancer on the 22nd Sept from a problem swallowing and subsequent endoscopy. I have had all the tests, CT PET ultrasound endoscopy and have a 2cm tumour at last count and T3 N1 M0 staging. I have a laparoscopy in the next few days then chemotherapy with the surgery in Feb 18.


You are now where I am going to be and really pleased that you are recovering well it's brilliant to read it. If you can enlighten me from the point of view of someone actually been through this awful thing on what lies ahead I would be grateful. I am over the shock now, just want rid of this thing and will do whatever is needed to live a long happy life. So laparoscopy, then oncologist and chemo is my next set of challenges.


I hope we can talk as you and you're recovery are the inspiration I need. Even a grown man can be scared that I know all too well.


Kind regards,


Robby


RLS67