Hi , I am new here! Recently diagnosed with oesophageal cancer. Had a few tests and have PETSCAN on 20th May . Don’t have a clue what is ahead of me . Feel I need to talk to people on the same boat . Find it hard to believe still !

Hi Hour,

I am so sorry that you find yourself here. My husband was diagnosed in November and one of the hardest things is the waiting for all the tests to be done and the results to come back. It takes a while for the news to sink in. Once he started on a treatment plan, he felt calmer as he knew something was being done.  Have you been introduced to your oncologist yet? Do you mind me asking if they have given you an idea of staging, or treatment yet? This is such a scary time, but you have done the right thing coming on here as there are so many positive stories and lovely people that can help you through this.

Take care,

Di

The PETSCAN is on 10th May , not 20th duh ! This is when they say they can stage it. From endoscopies they said it is at the base of my gullet and 20 cms long. From CT scan looks like it hasn’t spread to lymph nodes. I haven’t met the oncologist yet. Consultant has said radiation / chemo , surgery , then chemo. 
I think I will feel better once things get a move on , as your husband did. It’s just all this waiting and nothing happening apart from scans and more waiting. 
How is your husband now ? Did he have surgery ? Can he eat now? I am on a liquid diet  and often very sick . Thanks Hour

My husband, Colin, was give the same treatment plan as you to start with, but then due to it being at the junction with his stomach they decided not to give radiation and instead he received 4 cycles of FLOT chemo starting in January. After the chemo he was able to eat again, although the oncologist wasn't worried if he couldn't. He then had 6 weeks to build up his strength, before the operation which was on Tuesday. He was supposed to be moved from ICU on Wednesday, but they didn't have a bed on the ward, so he was moved on Thursday. Visiting him today and he was in his clothes (not those fetching hospital gowns ) and waiting for me at the door to the ward. He's drinking normally and hoping to have puree food tomorrow. I am blown away by how quickly they had him up and moving after the operation. He feels well in himself. The waiting is torture and the worst thing I did was go onto google before finding this forum. My husband is a very positive person and that has certainly helped him through this. Treatments have come along so much and the professionals really know what they are doing. I know it feels like it's going really slowly at the moment and nothings happening, but there are a lot of people working behind the scenes sorting out what is best for you. x

Hi Hour 

I am sorry that you find yourself here. 

I joined this site a year ago - when my dad was diagnosed with stage 4 oesophageal cancer. I don’t come on here as much now, but check in now and then. It’s a great community of people & this site really helped me process what was going on & other experiences.

My dad was diagnosed March 21 & started chemo May 21. I know what you mean about waiting around. I used to get so upset thinking I just wanted him to start treatment straight away & hated all the waiting around. They know that they are doing though & will be sorting things - what we did find though is once treatment started things moved quickly. 

My dad had flot chemo - he couldn’t have radiotherapy due to where the tumour was located & it being too close to his organs for radiotherapy (his tumour was 10cm & was 41cm down). Prior to chemo it had got to a point where he could eat very little & was regurgitating at most meals so would have soon been starting a purely liquid diet. However, after 2 rounds of chemo he noticed how much more he could swallow again and by round 3 he was able to eat most foods again so we kind of had an idea the chemo was working. 

We were never told how much chemo shrunk the tumour but was told it had shrunk significantly which meant he could then have Ivor lewis surgery - which he had last August. 

My dad suffers quite badly with neuropathy (from the chemo - although hoping this will improve in time) so he was advised against the follow up chemo after the surgery. 

One thing I was told & I will always repeat to others is to ignore what you see online - lots of the data can be quite outdated as treatment is coming along so much. Look at trusted sites like this. When my dad was first diagnosed & before I joined I spent hours scrawling through the internet & it wasn’t helpful & made me feel a million times worse. 

Wishing you all the best, take care. X

I am so glad that your husband is on his feet already …. that’s amazing! Thank-you for taking the time to share you and your husbands  experience on this matter. It’s not easy , my 3 grown up children have taken the news of this diagnosis as a big shock and it has been a challenge assuring them that I will be ok. I have directed the m towards support on MacMillan. Thanks again 

I am happy to hear that life has improved for your Dad. Thank-you for sharing everything. I am worried about the effects chemo will have on me but if I can have a piece of toast again , that will be major progress ! I have been on a liquid diet for 6 weeks now and still often regurgitate soup etc. It upsets me and I feel so hungry too ! 

Thank you.

When my dad had chemo he found a few days after he would be okay. Then he would have 2 or 3 days where he would feel a bit sick & was just really tired, occasional upset stomach etc. Then he had 5 or so days feeling ok before he was then getting injections prior to next round of chemo (can’t remember what they were now but was possibly steroids) to help prep for next round - but I could have this wrong but know he needed them day before, day of and day after chemo. 

We found any side effects he was getting if he wasn’t managing it there was something they could do to help support. So he was given anti sickness medication on his first day of chemo to prevent it. He had to be really careful of the cold for 3 days after chemo.  Often when he didn’t feel too great he would spend a lot of time sleeping but soon felt much better after a few days. 

Unfortunately for my dad it does seem the neuropathy is causing him longer term issues - but I think this improves for a lot of people.

During the days where he felt crap he would just keep focussed on the chemo & that it’s doing a job etc.

My dad said the same about being so hungry but just struggling to keep anything down. Hopefully when treatment starts you will soon notice a difference with what you can manage to keep and digest. Treatment has come on a long way. 

Take care. 

Thanks. We have a 15 year old daughter and were worried about how she would take all this. Once we knew what Colin's treatment plan was we told her everything and kept her informed every step of the way. I find that your own imagination is worse than knowing the actual facts. You are right to direct them here. I totally agree with Hope_86 in not searching the internet and some of the data being outdated. I scared myself silly searching online until I found this site. I wish you all well and if you have any questions along the way please ask x . 

• Thanks so much. I feel that talking about the whole process is helping me in advance to cope with what is to come  , meanwhile I continue to wait for the PETSCAN , then the results and then when the date for radiation / chemo . It’s a long process x

Hi Shanti,

Sorry to hear of your diagnosis. 

Welcome to the forum . Fortunately I have just passed 5 years post diagnosis - here's a link to my blog my Daughter helped me make to help anyone who was about to embark on a similar journey . The new world of diagnosis, tests, who to speak to , who to ask what....etc can be really confusing at times. This forum continues to offer so many people such great support .

Good luck on your journey - feel free to ask anything any time 

myoesophagealcancerjourney.wordpress.com/

Pete