Hi LaurenM91

My husband is currently on a trial for this type of cancer, he has stage 3 with a slight chance of surgery after the chemo and immunotherapy cycles.

We found the waiting for test results horrendous, he first went to the hospital at the beginning of October, we would wait a week after each test for the results, he finally started his treatment a week before christmas, we're now halfway through, he's not had any of the bad side affects from either immunotherapy or chemo and actually feels that eating is now slightly easier, Still a long way to go and we won't know if he can have surgery until the surgeon has done aother laparoscopy at the ned of the treatment,

We take each day as it comes, he's still managing to work - fortunately he can work from home - he gets tired a lot and he tends to be 'off' for a day or so after the IV's. 

Feel free to ask me anything, I'll do my best to answer, i know from our experience that it is a very traumatic time waiting on results

Hi my husband also has stage 3 oesophagus cancer.  How long did you wait from diagnosis to first treatment? It's been 6 weeks so far for my husband and we haven't had the planning meeting yet.

Caroline 

Hi Caroline,

It seemed like ages at the time but my treatment started about two weeks after diagnosis. I did pester them by phone though.

It may depend on the treatment, I was only offered chemo. 

Either way, phone them and explain you’re anxiously waiting.

Good luck

Dave

My dad got diagnosed 28th december he still hasnt had any treatment x tests aftet tests with promises of treatmenrs and still not and just hanging in there x

Hi Lauren

How do you both keep sane? I am currently waiting on a call back from my husbands cancer nurse. My husband is stage 3b so time really is of the essence. May I ask what stage your dad is? 

What is worrying is the development of new symptoms.  Bringing up food and pain in his right side. People tell me to relax. I simply can't 

Hi this so sounds like dad he got diagnosed 28th december didnt get pet scan till 29th january then told to have biopsy done then they would think of treatment in between this time dad stopped eating lost 2 stone and got feeding tube inserted on 10th feb my mum was told no more tests to be done as he waz to weak and they says he would have around a week x he went into hospice on 15th february and he turned into a new man they got his pain under control got him eating small things and gave him a new lease we brought him home and on 21st march the hospital decided to do the original biopsy and we wefe told they never gathered enough info from that joke!!! He went in today for another pet scan dont know whst to think or who to believe anymore so fed up with it all but god knows how my dad feels xx

Hi Lauren

I can completely relate. 

Had a phone call from my husbands cancer nurse today. They now want to do a staging laparoscopy around the 26th of April. With treatment starting in 2 to 4 weeks. God give me strength. I want to scream with frustration  I hope your dads treatment speeds up too x

Yeah exactly im the same it just makes me wonder how u can leave someone so long with nothing except pain medication my dads started choking on foods again the last week so something must be changing again but how do we know when i feel no one cares or doing anything for him x

Hi Lauren 

I totally feel for you. Pester his cancer nurse. I do much to my husbands annoyance. But I just have to do something. My husband is only 49. 

Hi

My Dad has also been recently newly diagnosed a week ago with stage 4 cancer of the oesophogus, he has a month today  until his first appointment with an oncologist, this seems like such a long time, is this normal???? It seems crazy....

Hi is your dad having tests in the meantime? A ct scan, pet scan or eus? If you have a number for the oncology dept please do ring or text them. I have text my husbands cancer nurse and got an appointment brought forward. Wishing your dad all the best

Hi

My Dad has had a CAT scan and two endoscopys, unfortunately the one oncologist who can deal with his cancer is on holiday for two weeks and another oncologist has left so this is the first appointment they can give him.

I am glad you have had the appointment moved forward.  

Hi

My Dad has had a CAT scan and two endoscopys, unfortunately the one oncologist who can deal with his cancer is on holiday for two weeks and another oncologist has left so this is the first appointment they can give him.

I am glad you have had the appointment moved forward.  

Hi omg that really isn't good enough. I strongly recommend making a fuss. Is your dad receiving any treatment in the meantime? 

No, not that I am aware of.  He has been assigned a Mcmillan nurse and given some advice on what to eat. He really isn't eating that much and like someone else above he is losing weight quite rapidly.

My Dad was diagnosed with terminal cancer of the oesophagus in March. He lives so far away from us I am struggling to deal with everything . He has refused to go to hospital and just wants to be left alone. He’s lost  so much weight and barely eating. He’s refused a stent . My step-mum is finding it difficult as he is very aggressive towards her at times (this is new) . 

Has anyone got any advice thanks 

Hi my husband is on complan, have you tried these. My husband adds double cream to them as well. They really are quite nice

Hi

It must be so difficult for your step mum. It sounds like your dad is really scared. The only thing I can suggest is that your step mum doesn't try to nag him to do any thing. I tried to encourage my husband to eat and just got aggravation for it. I have backed off now. Just asking oh have you had some breakfast for eg. But not going on if he says he hasn't. Hope this helps.

I would highly recommend your step mum continue to meet her friends.

Hi stella 

I hope you are ok. Any change with your dad? 

Dear All, I was diagnosed with esophageal cancer October 2017 & went through chemo & radiotherapy & finished 1st April 2018 thankfully I am doing pretty well now.  

It was stage 3 & had not spread even though they thought I had a second site of cancer but thankfully I didn't after various checks.  

Prior to treatment I could not eat, I was choking on food.  I started on a food supplement called foodlink complete & it comes in various favours & as it was liquid I could drink very slowly.  They are very tasty.  

Everyone is different & I hope above will help a little.

Please don't hesitate to let me know if you have any questions that I might be able to help with.

There are some groups.  I used an amazing Cancer Centre in Purley & would recommend them.  Cancer & the Centre helped change my whole outlook on life & I appreciate every moment however for me I would not want to survive & not be able to live my life fully as I don't have children but again all are different.

Thinking of all of you as I know it is extremely difficult for family & friends.  That always made me sad to see carers exhausted whilst looking after someone having chemo.  Carers must look after themselves as they need to keep themselves in good health too.  Cancer Centres are great for Carers too.  It doesn't mean people are just talking about cancer.  We laughed about many things & participated in so much.  

Best wishes to all.  

Hi

My husband now has a date for the final staging laparoscopy on the 26th, however is appointment for the results isn't till the 7th of may. Treatment could be another 2 to 3 weeks after that. Is this amount of delay normal? I am quite concerned they are going to miss the maximum 62 day target from diagnosis to first treatment. My husbands cancer has already gone to some lymph nodes. 

Symptoms he didn't have a few weeks ago are starting to appear. Such as pain when walking  breathlessness and increased difficulty eating. 

Hi Caz, I would recommend discussing your concern with your husband's allocated Nurse.  They are usually very supportive.  

I know it must be a very difficult time for both of you.

I will keep you both in my thoughts.

Increased difficulty eating I totally understand that is where I had the supplements.  

Hope you get answers to your questions.  Take care. 

Hi Caz68

I feel your pain with all the waiting, my husband was diagnosed on 11th November last year and didn't start treatment until 18th December, this would have been longer but he joined a trial for immunotherapy. The trial has worked quite well, he can almost eat normally again, his cancer has shrunk by about 2 centimetres. He is sceduled for surgery this week.

His was stage 3 with 8 lymph nodes affected, hopefully in a few days it wil all be gone.

Hang in there and keep strong, I know everyone says it and sometimes you really want to hit back with something, we've managed to keep our sense of humour throughout and always looked at it positively.

Hope the treatment starts soon for your husband and it all goes well