RE: Stage 4 Esophageal Cancer

Hi Hope1422 

I can't help with your question, as I'm not a member of this forum, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi There

Interesting to hear about your scans. My husband who has stage 4 oesophageal cancer which attached itself to the aorta with a couple of local lymph nodes. just finished 4 rounds of Chemoradiotherapy which was hard. We are now told he has to wait 3 months before they will scan him again to see how well he's doing. He is eating and drinking almost normally now after 3 weeks since his treatment finished and so why wait 3 months as any swelling has almost gone and surely if there was some cancer left it would be better to know sooner rather than later surely??  Does anyone else out there know?

Great news. I hope you continue to do well 

Hi, as far as I know they wait 3 months as they want to see the impact the chemoradiation has had on the surrounding structures such as the heart and lungs. It can be delayed. Fingers crossed the scan shows no spread. 

Thank you. Yes, fingers crossed.

We have rathe lost faith in the system I'm afraid with the NHS as they keep giving us wrong information and never seem to have read his notes at our meetings. Only last week they told us my husband was a stage 4b and all along they told us he was a stage 3. They wont give any time scale of prognosis as they give the standard line of 'everyone is different', so its impossible to 'get his house in order'. Pretty poor service I'm afraid. :-(

I’m quite data driven so from the beginning I have asked for copies of all scan and biopsy reports. I have taught myself what it all means. Which then helped me to ask the right questions. Do you know anyone who is a nurse or Dr? You could get them to help you, they could even come to appointments with you. Other things that are useful are the copies of letters which are sent to your GP after each appointment (You should automatically get copies of these sent to you) if you’re not getting them ask for copies of everything either from your hospital or direct from your GP. They use different language medic to medic and can be clearer in the outcomes as there is no emotional component involved (they don’t have to tell you to your face). We asked the clinical nurse specialist about life expectancy as we were starting life insurance claims. He was clear by saying months not years and minimum months if treatment doesn’t work. He said the higher number is dependent on treatment. With 6 months hitting us hard we have started sorting everything. I hope this helps. 

Thank you. I just spoke with the clinical nurse but still no joy. She said if we want all his medical records there is a charge and we have to go through a process! Unbelievable.

Correspondence with your GP is something you should have been copied in on. Ask the surgery for any letters from your consultant since diagnosis. You shouldn’t have to pay, it’s your information. Make sure the hospital copies you in on future correspondence. You will need this as evidence for life insurance claims. I hope you sort this out. 

Hi

Do you use the NHS app? I signed a form at my surgery saying I wanted access to all my records, and I can see all the letters from my consultant to my GP on the NHS app. I also receive a copy of the letters in the post. 

I think it'd be worthwhile asking your GP surgery if you can look at the letters. 

Hope you can get some answers.

Amanda 

Hi

I had chemoradiation treatment. I was told that the radiotherapy keeps working for 6 weeks after the last session. Then they allow time for any swelling to go down which is why the scan is at 3 months. Some people have a lot of inflammation and can't swallow very well at all after chemoradiation so they need the 3 months. 

Take care,

Amanda