Tumour of the duodenum.

Hi Tally and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis. 

Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).

This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Duodenal Cancer Support Group.

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….

Duodenal cancer forum

……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.

We also have our Ask an Expert section but do allow 3 working days for a reply.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community.

Hi Tally,

I was looking for something else but saw your post.

i was diagnosed with Duodenal Cancer in Sep 2023

What has the Oncologist  recommended for you?

I was told by the surgeon that Surgery was too

risky even though my tumour started small.

it was very hard for me to find anyone else who had the

same thing.

i hope to hear & am praying they offer you 

something soon.

i tried chemo unfortunately it didn’t work for me.

the tumour grew & I was told again that surgery

was out of the question.

please let me know what options they have given you.

Take care,

jo. 

Hi there Jojo. I’m seeing a specialist team next week and can hopefully respond to you better by then. I’m hopefully having a   food tube fitted today to try and build my weight up to put me in a better position for whatever is suggested. I do hope you are offered a healing way forward. Tally. 

Dear Tally,

im sorry it was late when i typed the message to you last night.

when I was diagnosed I couldn’t find anyone that

had duodenal cancer as it’s fairly rare.

i had surgery, not in the UK as i

wasnt offered it  at least not on the NHS & did seek second & third opinions privately but they

wanted to do more chemo which I didn’t really want as it hadn’t worked the first time around( I did five rounds)

I am a year post surgery & recovery was harder 

than I thought it would be. I’ve had several CT scans and there is no longer any evidence of cancer showing.

i feel very lucky to have had an experienced surgeon even though it wasn’t here.

my advice is to ask a lot of questions as I’m sure you will & of course try & stay positive even though

at times it’s very hard. I’m sure you know all this.

i wish you the best of luck, also ask your oncologist if he/she has had other patients with

duodenal as many haven’t.

if you decide on chemo push them to check after 

3 rounds to see if it’s working.

i hope this doesn’t scare you. I will check in every few days or if I can help in any other way.

i had whipple surgery, there is no doubt that it saved my life.

Take care,

jo. x

Dear Tally,

I am soo sorry I haven’t checked in on you but

hope the Oncologist has given you more 

information & by now you may have started 

treatment already?

I truly hope whatever they have suggested for

you is going to work. I also hope you have family

& friends around you to keep you positive.

Please try & stay strong, wishing the best for you.

take care,

jo. x

Hi Jo, good to hear from you and I hope all is going well. I’m in hospital tomorrow for keyhole surgery so the surgeon can have a look around. This is after a million scans and an awful lot of blood work, inevitably. If all is reasonable then we plan to go ahead with the Whipple procedure. Not too many other options left. I may need to have a feeding tube for a week to pop some weight back on as I’ve lost so much. It’s so difficult to eat and I find the supplements pretty intolerable. That should enable me to tolerate the surgery better though. No more news at present but I’ll do my best to keep in touch. Please stay ok and look after yourself. Tally. 

Dearest Tally,

im so happy they are offering you Whipple surgery.

There is no doubt in my mind that it saved my life.

its been just over a year now since my surgery &

ive put weight back on and for the most part doing 

really well. I am also Cancer free.

That is probably the best opinion to remove the 

tumour for you & im delighted that they are going 

to do keyhole to see how they can help you in the 

best way possible.

Please try not to be too scared as the surgery is 

huge but if they can remove your tumour & like

me be cancer free then it’s all worth it.

i truly hope you have support at home to help

with recovery.

You seem to be fairly young so hopefully it will

all be worth it in the end.

wishing you all the best Tally & remembering you

in my prayers. 

take care, take a day at a time & I promise you

things will get better but first you have to go thru

Some tough months ahead but I am living proof 

that things can only get better.

jo. x

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