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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.

Diagnosed oesophical cancer last week

itfcbas
Posted by

Hi, i am a 60 year old man in reasonable health, apart from Hypertension (controlled) slight difficuilty swallowing about 2 months ago, went to G.P saw consultant one week later, had gastroscopy 10 days later, waited 2 weeks for result which shows poorly differentiated adenocarcinoma in the lower oesophagus, i had a CT scan on monday to determine whether surgery is possible, i am frankly petrified myself and my wife is also distraught....playing the waiting game again.

Helen1624
Posted by

Hi I know you are terrified and your wife distraught as I was that wife and my hubby was you. The waiting in between all the tests seems like forever and unfortunately there are still a barrage of ts for you to go through but it is all to make sure you get the right treatment to give you the best chance. I hope you have had the results of your CT scan now if you haven’t try contacting your CNS and ask for them just so you’ve got an idea of what is happening, I think our CNS was fed up of me when all the treatment was over !! 
you will still need a possible PET scan, a laparoscopy and an EUS as these all determine the extent of the tutor and how best to treat it. My hubby had T2N3M0 and was treated at Birmingham Heartlands Hospital with 3 chemo then major surgery and 3 more chemo. I know your wife is distraught I was exactly the same and I through myself into getting him better, eating properly and enquiring into this terrible disease to help us through it. If you have any questions please ask away, we probably went through it all. From one loving wife to another look after each other. Love Helen xxx

BrentS
Posted by

Sorry to hear of your diagnosis. I was 61 when I had a similar diagnosis in October 2013. I too thought my world had fallen apart, thinking it was a death sentence. My son was getting married in six months... would I be there? The fact that I am writing this some six years later is testament to what the NHS can do.

Strangely I soon adopted a positive attitude and this helped me through the whole treatment process. And the later recovery period. It helped that I have a clinical background so could understand most of what was going on, but nevertheless my wife was an incredible practical support in accompanying me to hospital visits and being another pair of ears (especially as my ears aren’t too good!).

Very soon after you have had your CT scan and probably a PET scan as well the MDT will meet and they will be able to outline your treatment pathway. And if surgery is an option you’ll meet the surgeon who will tell you how they will do the replumbing.

How’s the eating now? Are you managing to keep your weight up? It’s good that you are in good heath otherwise, but you need to pay attention to your fitness. Get down the gym!

There are a number of us survivors who contribute regularly to this forum (there are a greater number of survivors who don’t write here, they just want to get on with their lives and put all this behind them I imagine), so if you have any specific questions or want to let off steam, then you know you can post here and get a sympathetic response from people who have been through what you are going through.

Counting the days, making every day count.

Brent

RGML
Posted by

Hi Brent, sorry for jumping on your reply here, 

does everyone get a PET scan? My partner has had a CT and endoscope with biopsy but we were told the next thing was MDT then they will contact us. Does this mean they think it’s too advanced for treatment? 

Luv Chox
Posted by

Hi RGML,  

My husband had Biopsy, CT scan then PET scan, sorry I am unsure if this is the same for everyone. I know the wait for information is torture, I hope the MDT meeting is soon and you can move forward with a treatment plan. My very best wishes to you both X

The smallest act of kindness is worth more than the greatest intention
Zappaman
Posted by

Hi, I think everyone gets a PET Scan usually the last test if I remember correctly. It's a radioactive material that you get through a canula and I think it also contains glucose. The idea is that cancer cells are active and will digest the radioactive glucose which will then show up on the PET Scan and show if there is any other cancer cells in the body and lymph nodes. I think it is after that they give you a staging, it's not a death sentence. Your mind will be running riot and the waiting is the worst. Good luck and kind regards Frank.

RGML
Posted by

I don’t understand why they haven’t done it yet then? Why have we to wait for the MDT. They must not think he is suitable for treatment or they have messed up?!?!

ChrisW5
Posted by

I wouldn’t read anything into the wait. It’s unfortunately just how it works and is something I found incredibly frustrating too. At my hospital I never heard about the next step, test or scan until after the MDT. If the scan results were ready in time for the MDT it meant each next step was fast but there were a couple of times were it was obvious that the scan results arrived too late for the MDT and I didn’t hear anything more until a week later.

My full staging process was something like endoscopy with biopsy, endoscopic ultrasound, ct scan, mri (I’m not sure this one is standard, the doctors noticed something on my liver that they wanted to investigate but it turned out to be nothing), then a pet scan and finally a staging laparoscopy.

I appreciate it’s a very stressful position to be in but try to remain as positive as possible. I found one the MDT had reviewed my test results the next steps were always quite quick and I’d be receiving calls from the hospital to arrange the next scan in a few days.

BrentS
Posted by

I Had some sort of investigation every week for several weeks. The MDT meets every week so they probably review results as they happen. If it was advanced they’d want a PET scan to see if it had spread.

I would recommend you get in touch with your specialist nurse rather than worry about something that hasn’t happened yet. They will be able to give you an idea of the sequence of things. 
For most people it is about six to 8 weeks from diagnosis to the start of any treatment.

Remember that being positive really does affect the outcome. (Easier said than done, I know). So find out what you can about the upcoming scans and tests and rest in the knowledge that your clinical team are going to do the best for you.

Counting the days, making every day count.

Brent

RGML
Posted by

We don’t have a specialist nurse, we have no one to ask, that’s why I came here. 
not sure where to go or who to ask. 
thanks 

itfcbas
Posted by

Thankyou Brent, i will try. 

El2308.
Posted by

Hi my husband was diagnosed last Tuesday been struggle to eat since before Christmas he had a scan tues and camera down next wed the waiting game is unbearable I no how u feel neither of us are sleeping it’s like a living nightmare!! They have to decide whether he needs surgery or chemo first week have been told to carry on as normal I’m finding it quite difficult it’s all I can think about xx

itfcbas
Posted by

I feel your pain, i have not been able  to work since diagnosis last wednesday, only going out of the house for CT scan, almost reclused, i recieve txt's from family & friends which reduce me to tears, at my insistence my wife has returned to work and social things, still not sure if surgery is appropiate, the waiting is unbearable, although i am eating soft food quite well and lost only a few pounds, now able to get off to sleep but often wake up in the middle of the night with a feeling of pending doom, its the feeling of unknown. ....best wishes to you both x Barry - (Deal in Kent)

El2308.
Posted by

I no how u feel Barry I don’t no how my husband is carrying on working he says it’s taking his mind off it!! The waiting is horrible just need to no what’s happening seems to take forever!! Take care xxx

Lou1972
Posted by

Sorry to hear about your diagnosis, I understand how you are  feeling. I was diagnosed with the same type of cancer in my stomach in Aug 18 at the age of 46.  

I too struggled emotionally after the shock of diagnosis, I found the waiting unbearable at times, I even found being with my kids difficult at times, the fear of what was to come was too much. I found that pushing myself just to do something normal each day helped, gym, walking the dogs, cooking helped and soon I made sure I did something nice each day, even if it was just a coffee with my husband. I found all the tests and appointments a whirlwind but once I knew what the plan was I became more settled. Diagnosis was 14th August and chemo started 11th September, I ate as best I could and exercised in preparation. 

everyone is different and we all have our own way of coping but if you are struggling do tell your team, people tend to get on with the physical treatment and ignore the emotional treatment that is needed. I got sleeping tablets from my GP to help on those nights I couldn’t sleep, a good night undisturbed can make a huge difference.  

good luck with everything, best wishes, Lou x

Lou