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.

T2nomo oesophageal cancer

George-Mildred
Posted by

Hi 

please can someone give me some advice. My husband hasT2 nome oesophageal cancer, he has been advised to have chemo before the operation. But we are too scared to wait that long because they’ve said if he has the 3 sessions of chemo he won’t have the operation for about 5 months. What if  the chemo doesn’t work and in 5 months time it’s spread some much that it becomes terminal. Please can anyone help with some advice. I’m reading on here that people have chemo for 5 weeks then go for the operation which is a fair amount of time. But we are scared about the 5 month wait.

ChrisW5
Posted by

Hi,

You should definentely talk to the specialist nurses and if they can't help then your consultant/oncologist. They should be familiar with your situation, able to give you the facts and hopefully provide some reassurance.

I was diagnosed with T2N3 oesaphageal cancer October/November 2018, started chemotherapy December 2018 and then had surgery at the end of March this year. Everyone is different but the chemotherapy was very successfull for me and I had a post operative staging of ypT0N0 so in my case it was worth delaying the surgery for chemotherapy.

Kind regards,

Chris

BrentS
Posted by

I think I am right in saying that most people have chemo before and after surgery as there are studies that show this delivers the best outcome.

Of course the patient has the right to go straight to surgery if they don’t want chemo.

The most important thing at this stage is to get or stay fit because whatever treatment path he takes he will benefit from strength and fitness, and of course a positive attitude.

I was T2 when diagnosed, T1b after chemo, before surgery. That was six years ago! So good luck to you and your husband. There are lots of survivors here to share their experiences, so keep posting.

Counting the days, making every day count.

Brent

Silverfox65
Posted by

Hi George-Mildred

I was T3N2M0 pre Chemo [ECX]  and then  reduced to T2N1M0 pre op - so definite shrinkage

As Brent mentions - everyone is different and you have choices. 5 Months does seem a long time but when I reflect it was very similar for me i.e. Diagnosed 14 April - Operation 23 Sept.

My course of Chemo meant 9 weeks of ECX then 6 weeks of ' waiting' . They suggested this ' wait ' was the optimum time for the body to recover so that you are strong enough for the operation but not enough time for the Cancer to regrow ....6 weeks post op I then had another 9 weeks ECX.

Chemo isn't easy but I convinced myself that feeling bad meant it was doing it's job ! 

All the best  for your hubbys journey and ask anything anytime  

George-Mildred
Posted by

Thank you for replying Chris. I’m just worried about the 5 month delay. I will speak to the oncologist. Such worrying times

George-Mildred
Posted by

Thank you for replying to me. I’m just so scared that if the chemo doesn’t work it will be too late. I will speak to the oncologist when we eventually get an appointmentto see one I just worry about the time.

George-Mildred
Posted by

Thank you for replying to me. It’s so difficult to know what to do. Our initial reaction was to go straight for the operation as he is T2. We don’t understand why he needs chemo if he is only T2 now. It’s so confusing to us. When we spoke to our consultants it was difficult to understand him and we cameaway none the wiser. We are hoping to see an oncologist soon. We’ve lost faith because my husband had his first endoscopy on august 10th but didn’t get told until the end of October. So we are scared and worried that we are running out of time as our hospital appears to be much slower doing things. 

Zappaman
Posted by

Sorry to hear that your husband has been diagnosed with oesophagus cancer.  There's no easy answers as everyone has to decide what is best for them. I didn't have chemotherapy and radiotherapy before the surgery and it took about 3 months from diagnosis to surgery. That's because I was in no rush to get the surgery and I knew that the cancer hadn't  just suddenly appeared. I had been losing weight over several months, a lot of weight actually about 5 stones. I was diagnosed with T3 N2 M0 staging in July 2016 and after several appointments and discussions although shrinking the tumour is the aim of the chemotherapy and radiotherapy, there's no guarantees. It seems to be the preferred method of treatment and has been successful in most cases. Whatever you and your husband decides you have to be positive and comfortable with the decision. I'm now a couple of months past the 3 years clear mark and I have no regrets about the decision. Anyone who has had cancer will always have a thought in the back of the mind about the " what ifs". Good luck and kind regards Frank.

Luv Chox
Posted by

Hi

My husband received the same staging pre FLOT chemo, he was diagnosed in June, had four sessions of chemo, had the operation in October and has been given the "all clear, no cancer cells detected" he has chosen to do the follow up chemo, just in case, the belt and braces approach. In all honesty the past few months have been difficult and of course we still have a way to go, but we will get there. Good luck to you both and stay strong, please feel free to ask any questions, this site is full of lovely people who are happy to help. 

Best wishes X

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

Hi George-Mildred

Sorry to hear of your husbands diagnosis. 

To help with your comment 'We don’t understand why he needs chemo if he is only T2 now'......................... I was T2N0M0 when diagnosed. The aim of the chemo is not to shrink the tumour that's there (although it will do this), it's to kill any other cancer cells which may be lurking elsewhere which haven't been detected and could cause the cancer to come back at a later date. So it's a preventative measure, just to be on the safe side. 

For me it was a no brainer, there was no decision to make, I was having the chemo to give myself the best chance going forward and that was that. I was diagnosed 10th September this year, have had 3 sessions of FLOT chemo so far (one more to go) and then they are looking to operate end of January, so that will be about 4 months or so since diagnosis to surgery so not that far off what they have told you. Depending on what type of chemo they are recommending, that will take several weeks anyway so there will be an unavoidable gap between diagnosis and surgery. 

Whatever you both decide to do, make sure you ask everything you want to ask and have all the answers you need to make the right decision for you both. If, after you have asked everything, things still aren't making sense, ask again until they do. I've found the medical professionals can be a bit vague with information sometimes, so just keep asking until you get the answers you need. 

All the best

Deb

Helen1624
Posted by

Morning, I have just read your post and I was exactly the same when my husband was diagnosed I wanted everything to happen yesterday! However the team does know that it’s the best way to treat this awful disease. If you don’t understand anything you should have been allocated a Clinical Nurse Specialist who is your go to person, they were the human face of the team, they answer questions in an understandable way, layman’s terms. They are always on the end of the phone and believe me they had many a tearful phone call from me during my husbands treatment. Also we are all here for any questions or advice, where is your hubby having his treatment as someone may have experience if the same hospital. Good luck with everything and ask away. Lots of love and prayers Helen xxx

KevRover
Posted by

Hi George-Mildred

Just to hopefully add some further re-assurance as to what others have kindly posted in reply to you...

I was diagnosed on 28th Jan 2016 at stage T2N1Mx, had my op 1st July 2016 following 3 cycles of ECX chemo so a similar wait to your husband's.

Recently had my 3rd annual check-up and all good, still clear of cancer.. Enjoying life like never before in fact!

Best wishes for the treatment ahead,

Kev.

Lou1972
Posted by

I’m so sorry to hear about your husband, I know it is a frustrating and scary time but there are many success stories to be found here. I was diagnosed with stomach cancer (same treatment as oesophageal) in August 2018 but had my first endoscopy in May 18, it took 3 to find the cancer. Like others I had 4 rounds of chemo pre surgery. It started 11th September and I had my operation 2nd Jan with more chemo scheduled for March, I only managed 2 post surgery cycles as it made me too ill. I didn’t know what my staging was prior to surgery, I was told it was ‘chunky’ I had laparoscopic staging pre and post chemo and was told chemo looked like it had done a good job, this was confirmed in the full pathology report post surgery, I was staged at stage 2n0m0 with good margins. 

I understand the need to want it cut out straight away and that is only something you can decide, I only know I’m glad I did pre op chemo to hopefully halt any growth as I wasn’t strong enough post surgery to have a full hit. Chemo-op-chemo is the standard approach but unfortunately nothing comes with a guarantee of success. I’m so glad I’m here almost a year after surgery,  the care and treatment I received from the NHS was outstanding. 

wishing you and your husband every success x

Lou
George-Mildred
Posted by

Hi Chris thankyou for your reply can you remember what kind of chemo you had and I will definitely have a chat to the oncologist and nurse .

kind regards Judy.

George-Mildred
Posted by

Hi Kev. 
when you had your chemo before the operation did it bring your cancer stage down at all? Also do you get checked with a scan during the chemo? We are worried that the chemo takes so long and if it doesn’t work then it will spread. 
sorry for all the questions on here 

Judy