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??
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.
Hannah x x
Thank you Hannah x
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
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.
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.
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
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 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
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!
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??
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.
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
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.
Nice to hear from you.
Yes we are quite young to have this condition but my mind is we are fortunate to find out when something can be done to treat it.
My operation was 5 weeks yesterday and i`m pleased to say getting stronger each day.
I dont worry about things I cannot change , I put all my energy into how I can make things better.
So, do as much exercise as possible pre and post op , it makes so much difference.
I`ve almost completed a blog to share my journey and help others if possible... here`s the link for a sneak preview
Feel free to ask me anything anytime, this condition is beatable
Thank you for your reply, what an excellent blog so well put together and I think pictorially it gives a more complete view of some of the words and phrases used which of course means its more relatable. You are doing so well and like you i have a wonderful wife and daughter, what more reason do you need to be positive. The initial shock has gone now and I am keen to commence the journey and with people like you in my corner I will beat this awful cancer.
I have not lost any weight to date I am sure that will come, it is the unknown effects of the chemo that is a little daunting, the operation concerns me less if that makes sense at all. I will keep in touch with you and please do likewise. My local team in Warwickshire have been excellent and the care to date first class.
Together we will beat this, my best wishes and kind regards to you and your supportive family.
No problem Robby.
Thanks for the blog feedback :)
Re Chemo, I`m not sure what combination you`ve been prescribed but recommend you take each day as it comes. I understand it can be daunting but everyone reacts in their own way and it`s needed to get us better
Keep in touch and let me know anytime I can help
Thank you for this reply shine27
Your very right about not reading too much about the negative effects.
We have a meeting this Wednesday to discuss the next steps so I'll update you then.
Just a question about your Mum's feeding tube- is that just to give her extra nutrition as well as eating normally?
Hi Running Lady
My husband lost a lot of weight prior and just after stent was fitted. However his first chemo session was two and a half weeks ago and although he hasn’t gained any weight he hasn’t lost any more. Also after a bad week post chemo he is now eating well and enjoying food again. His next chemo is Friday so I am expecting another bad week but if it only is a week and he continues to improve we can cope. The stent procedure was not pleasant but definitely worth it. Good luck and please keep in touch and send updates it is very helpful to me to hear others experiences. Good luck and many thoughts.
I am waiting for the laparoscopy appointment it should be this week then seeing the oncologist. What I don't know yet is my defined treatment plan as soon as I know I will let you know. I am struggling to lose this constant burning pain in my chest it is becoming ever present now and is uncomfortable I think it may be the tumour growing and blocking the tube, I do have a hiatal hernia too I just want to get cracking with the treatment. My physical and respiratory tests were a pass so that was good news today.
Will keep you in the loop. Hope your recovery keeps gaining momentum.
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