new to this, advice please

Hi

That was probably a specialist cancer nurse who will likely have an appointment to go for a CT scan if they suspect cancer. Then you’ll find out when the MDT will discuss your results. It’s a frustrating time now is the waiting and being asked to do lots of tests and scans. I was diagnosed on 3rd May by gastroscopy and I have been through lots of tests. I’ve only just heard this week that my treatment will start on 12/7. 

Can you look on the website of the hospital youve been referred to and find the number for the specialist cancer nurses - upper GI cancer? 

Best wishes

thank you , and good luck , i got a ct scan  coming next 7 days , not heard about any other tests,  yes i just want to get on with it ,

It is difficult, but try not to anticipate. You really do not yet know, and you may still not know after your next CT scan and chat.

You will hear about any further tests after each MDT.  They have a look at each scan and keep getting all the information they need. Everyone will be different. In my case I’ve had a PET scan and EUS. The waiting is awful but the scans are done so you can get the best possible treatment plan for you.  It’ll soon pick up the pace and you’ll get to the point of treatment. X

Hey spurs, terrible name :p I hope you don't mind taking advice from a gooner. If you are struggling with your swallowing try to avoid foods that will irritate it (large chunks of meat, bread). My advice is really chop everything up and eat soft foods. The less you irritate it the better. Your specialist nurse will sort out everything for you, you will more than likely have scans soon to tell you more. Be patient though the Dr's are working in the background analysing your lumps which is just as important.

i just had a CT sacn with  contrast today. i am hoping i get news or an appointment this week for all my results, the blood the poo the bi-opsies, and the CT sacn , the waiting to know is the worst , try not to think but , when you off guard it pops up in the brain, which  is quite a bit now, still paiful, but not as bad as it was, i think the 6 bi-ops she took made it really sore.like i said still not good, even drinking wayter can cause pain, and i have  cut out red meats , but everying causes pain .

Mine hurt loads after the biopsies. It’s really rough how they cut into you like that. It’s boring but stick to soft food. Mention to the nurses that it hurts and if you’re worried about not eating enough they might tell you to ask your GP for fortisips or get a dietician to speak to you. 

I recommend forsips anyway. The fresubin one actually taste quite nice especially the cappuccino and forest fruit flavour ones. In one  small drink you can get 400 calories and vital protien that your body needs. If you don't get cold sensitivity from your chemo I also recommend freezing them.

ad to go for a pet scan, as that i  more intense, if that is a better scan, why waste my time with a ct scan, i complsained about being a telephone patient and not happy, that was the day they called to say ct scan showed no spread,  but pewt will be better,  next day i get booked in for pet scan (friday) and i could see consultsant, but the times clashed, so i had to do the pet scan, but they booked me for monday 4th to see consultant,  then i get phone call saying scans will not be back can we change the day, ok i can see that, till she said Monday the 11th, i said are you joking thats another week, yes she said , i said NO, i am sick of being a telephone patient, and i keeping that appointment, then they call again saying the team she has to cancel it, and rearrange, i said i will be thier 10am monday as arranged and will not accepot any cancelation, And if that is a problem, get the team or person that wants to cancel it to call me, i got no phone call, but have got tex telling me my appointment is for monday. All the way i have had to fight to get things done, i went doctors 4 times, A&E  , walk in center and now having to fight to get to actually see someone, Who needs this

It is natural to be angry and to fight for your life, but I think you need to be careful who you fight with. List instead in your own mind who you need first on your side.

Telephone appointments can be preferable. What has top be said to you can sometimes be summed up happily in a single sentence  and you do not have a journey on either side and a half hour's wait when you get there.

Sometimes a face to face meeting is better, indeed, but not by any means always.

It sounds like you had a bad start to this, but do not let that get in the way of working with the people caring for you. Appointments get changed for many good reasons, and a week's delay is not a long time.

Sorry.