Husband recently diagnosed. Mind is whirling!

Hi, there isn’t really a “usual steps” as there are various different treatment plans depending on the type of tumour, location and whether or not there has been any spread to nearby organs or lymph nodes. Unfortunately you are in the horrible waiting period when you don’t yet have answers to those questions. The CT scan will provide some and your husband may also undergo a PET scan and laparoscopy to get a full picture. At the moment, trying to keep his strength up through diet and whatever exercise he is able to manage are so important as the treatment plans for this form of cancer are pretty tough on the body. Load of appetite is not unusual but, if he is fortunate enough to still be able to eat, then he needs to continue to do so. Think of food as medicine. That’s what I did. Also try to maximise the calorie content of anything he does eat. I was adding cheese, butter and double cream to just about everything. Healthy eating is no longer as important as just eating. Hope you get some positive news following the MDT meeting…

Movicol was my best friend during chemo which bunged me up something rotten. I had a sachet every morning just as a preventative measure and it seemed to work a treat so might be worth him trying that.

Unsure what the co-codamol had been prescribed for as certainly not something that I was told I needed to take at any point during my treatment. I did however end up getting some off a work colleague to help me sleep when taking the steroids they give you during chemo.

Found the co-codamol helped as it makes you feel a bit drowsy.

Russ

Hi - I had a tumour in the lower oesophagus diagnosed almost 5 years ago. After the CT scan I had a PET scan and a laparoscopy (as mentioned by Cool Blue) to check for any spread. Thankfully that was all ok so they gave me FLOT chemo for 2 months before operating - that was then followed up with another 2 months of FLOT.

The chemo affects everyone differently and, luckily, I was not too bad. Anything that he can do to keep his fitness will help in the long run if he can manage it.

I also agree with Cool Blue's comment about food - it is just medicine at this stage. He doesn't have to like it but just eat what he can in to keep his strength up. All told, over the 9 mnths from diagnosis until the end of my chemo I lost 6 stone!

Hope that you find out more soon

Thank you. He received his results of the scan and the outcome of his MDT. 
It has spread to lymph nodes in his lower abdomen that they say are inoperable. Due to being too close to a major aorta. 
He has a terminal diagnosis. He goes to see Oncologist on Wednesday to see what treatment is available. 
Anxiety is crippling. 
Has anyone ever requested a second opinion or went private at one of the major cancer centres? 
if so how did you go about it? 

Very sorry to read this but i wondered if maybe getting a 2nd opinion from mabe the Royal Marsden cancer hospital in London which is what i did when i was diagn9osed with malignant oeseophageal cancer exactly a year ago. They said i could have the tumour removed but it would only have a 20 per cent chance of working so i have been having chemo and immunotherapy and have just had a stent fitted which is working well. I find taking one day at a time and not looking any further the best route to take. 

Hello Nellybean

I’m sorry you are in this horrible situation, it’s such a shock and every day seems to last forever waiting for results and answers.

My husband was diagnosed in 2008 with inoperable OC because engorged cancerous lymph nodes were too near a main artery - surgery was considered too risky.  He was offered palliative chemo (ECX) and we did all we could too. The chemo worked well, the nodes returned to normal and the tumour all but disappeared.  He had a full oesophagectomy in 2009 and he lives a fairly normal life now, we are so very fortunate.

Treatment has moved on and there are more options available now, I wouldn’t hesitate to seek a second opinion because hospitals and consultants have different approaches and you need to explore every possible option. The Oesophageal Patients Association will probably be able to guide you through the process and also recommend the best way forward.

I wish you both all the strength you need x