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.

Post op news

PMC84
Posted by

Hi 

My mum (62) was diagnosed with stage 3 Oesophagus cancer last October (2018) after several dilatations, before which she had been told the stricture was benign. Since then she has had 3 rounds of FLOT chemo and surgery to remove her oesophagus. She's recovering from surgery well but has been told today that the tumour did not respond at all to the chemo : ( I had anticipated her being told that she'd have no more chemo as she suffered a rare side effect of the chemo (air pockets forming in the bowel lining resulting in constant diarrhoea) so it shouldn't have surprised me, but to be told that it had had NO effect on the tumour has got me terrified about what will happen if/when more cancerous cells are detected. Will it just be palliative care? Will they attempt radiotherapy? Does the initial lack of response indicate a more aggressive cancer meaning it will return quicker? I have so many unanswered questions. If anyone has experienced anything similar I would really appreciate your advice. Thanks in advance. 

Zappaman
Posted by

Hi, I was diagnosed with oesophageal cancer T3 N2 M0 back in July 2016. I decided against any chemotherapy and radiotherapy and just had the Ivor Lewis surgery. They removed about 9 lymph nodes and I think 4 were positive. I chose not to focus on the numbers and to concentrate on getting well again. I was 57 years old and had been a smoker for about 45 years. I had the surgery in October 2016 and full recovery can take a while. However I am enjoying life and I have 6 monthly check ups, weight taken and a chat usually, all clear and I have regained the 5 stones that I had lost prior to surgery. So I think if it has not spread anywhere else there is no need to panic. Being positive really does help as hard as it may seem. I now appreciate every day, I have so problems with random food dumping so I have not been able to get back to work. Good luck and kind regards Frank. Please feel free to ask anything else you want,and I will answer if I can help.

PMC84
Posted by

Thank you so much for your reply, I can't tell you how much I appreciate it. I am so happy to hear that you have had a good recovery and wish you all the best for the future. My mum is such a strong person and is focussing on staying positive, you sound very similar to her : ) I just need to take a leaf out of her book and stay positive for her too! Thank you once again, your message has given me comfort and hope. All the best, Philippa.

PingG25
Posted by

Hi - Thank you so much for the very useful post. I am 57 and have T3N2M0 and first dose of chemo that has knocked my white cells out so 2nd lot postponed for now - I am curious why wuou decided not to have chemo what was your reasoning for that ?

regards

john

Zappaman
Posted by

Hi John, I asked the oncologist how much the chemotherapy would shrink the tumour and he replied " not that much". I was not given any guarantees or convincing evidence that pre surgical chemotherapy and radiotherapy would greatly enhance the outcome for longevity. So I decided I would prefer to have my immune system as strong as possible to get me through the surgery and recovery. If you strip away all the b.s the hope is that the poison (chemo) will kill off more cancer cells than healthy ones. I felt that I had a better chance of survival with the surgery only and I have no regrets. Everyone has to decide what is best for them in the circumstances, but most people do as they are told and don't research anything for themselves. The standard treatment offered is governed by the 1939 cancer act and although the chemicals and equipment have changed, it's still the same treatment as my brother had back in 1976. Chemotherapy, radiotherapy and surgery. Good luck with your treatment and I hope everything goes well for you. Kind regards Frank.

PingG25
Posted by

Hi Frank thanks for the info. I researched the drugs used in FLOT 1943 1956 1976 and 1986 so no great progress. My Dad had the same Oesophageal cancer in 1997 and never made it after surgery as he had Mets everywhere else apparently. I never did ask the question about how much it would shrink the tumour and was not aware that in some cases it does not work. I will ask the question as my second dose is tomorrow and the first dose knocked my white blood cells out amd had to have bone marrow booster all last week. I have a degree in Physiology so it does not make sense to me to kill all the good cells and hope you get the bad ones in the process - I will keep reading and asking questions. Once again thanks for the reply as there is a lot of b/s spoken by those you hope would know better. Did your brother have Oesophageal too ? 

regards

John

Zappaman
Posted by

Hi John, that's good to see that you have done some research and having a degree in physiology gives you a good knowledge. If i remember correctly my brother initially had problems with pain in his thigh. He was 18 years old at the time and they thought it was muscular so he was getting physiotherapy. After the second session he said it was too painful so wasn't having anymore. They took him in for exploratory surgery and discovered a tumour in his leg. He then had a scan and he had mets in several places so he was given chemotherapy and radiotherapy. He died in September 1976 about a year after diagnosis. I had seen the effect that chemotherapy and radiotherapy had on him and after my diagnosis it seemed like every cell in my body was screaming at me not to have the treatment, just the surgery. I had a picture in my head that my oesophagus was like a bicycle inner tube so even if the tumour shrunk they would still remove a reasonable margin either side of the tumour. I started juicing green leafy vegetables and drinking the stuff to oxygenate the cells. Good luck and kind regards Frank.

PingG25
Posted by

Thanks Frank 

It is a hard decision to make as we are all different and my degree was 35 years ago - found a great post on the outcome after Chemo and surgery from Silverfox and also your posts have been very helpful - I talked it through with the Surgeon yesterday afternoon and decided to continue chemo today - no guarantees from him - will keep you posted on progress my white blood cell count was 4 times higher than my normal value so the bone marrow booster worked. 

regards 

John

Zappaman
Posted by

Hi John, that's great news about your white blood cell count. Yes Silverfox has a very informative blog link in his posts. People who have had the treatment you are having will be able to give you good advice on this path. I don't think Brent will mind me saying that he is the main man for information and great advice. He is the longest survivor who still posts here and he is living life to the max. Yes do keep us posted and good luck with your next round of treatment. Kind regards Frank.

BrentS
Posted by

Hi Philippa

As Frank has given me a mention I thought I’d better step in and add my two penn’orth.

I do know this disease is harder on family members than on the victim. So having watched my wife and two boys support me and each other I know something of what you must be feeling.

But as I always say it hasn’t killed me yet so I’m going to carry on living. Positivity really does help aid recovery.

The surgeons, specialist nurses, oncologists and dieticians really do know their stuff so put your trust in them. They can answer any questions your mum or you have. Don’t worry about statistics, they won’t tell you anything about the future of an individual case.

So what CAN you do?

My wife and I kept a journal of hospital visits, questions we wanted to ask and the answers. Names an telephone numbers of key people and contacts.

Offer practical help, be understanding when your mum is abrupt - she will tire more easily. I’m sure she’ll appreciate meal being prepared for her. And if she feels like it days out away from hospitals and the worry of it all. 

Spoil her!

Suggest afternoon naps. Keep well wishers from offering anecdotal advice. How aunt Mary’s neighbour suffered or recovered miraculously will have no bearing on your mum’s case.

And finally DON’T Google. All the information anyone needs is on the Macmillan web site.

It’s a bumpy old road with its ups and downs and I wish you all well at this tricky time.

Counting the days, making every day count.

Brent

oyita
Posted by

Hi Frank,

I have just started to browse through thıs forum. I am wife of 39 yo male who is 4 rounds into pre op FLOT for GEJ cancer T3N1M0.

We have been scheduled for evaluation of tumor with gastroscopy and CT scan in apx 10 days after the 4th chemo.

My husband, although tolerating well the treatment so far, is keen on getting the surgery. Our oncologist does not go into too much detail with us but, we also want to be informed as much as possible before our next appointment with him so that we can discuss whether next 4 rounds are really necessary or not. Our doctor is more likely to push for going up to 8 rounds before surgery.

Honestly speaking I dont understand the compromise between lets say 4, or 6 or 8 rounds of FLOT, and how the quantity is decided...

I am no doctor, but still i would like to understand the science behind the FLOT regimen. I am also affraid about the cummulative impact of all the toxicity he is taking on. 

I would appreciate any word of wisdom or advice..

Regards,

oyita

Zappaman
Posted by

Hi Oyita, I'm sorry to hear that your husband has this cancer. I'm not able to give you any advice about the chemotherapy treatment as I didn't have any treatment before or after surgery. I'm sure others who have had chemotherapy treatment will be able to give you advice once they see your post. Good luck to you and your husband, kind regards Frank.

PingG25
Posted by

Hi Oyita

Sounds good if he has dealt with 4 rounds of FLOT. Normal process is 4 FLOT - Surgery - 4 FLOT in London with the guys who are treating me. I have just had 3 FLOT and not 4th which we are debating - 2nd PET scan has shown a good reduction in tumour and nothing in lymphs was T3 N2 M0 - which I am trying to get more information on. I changed my diet to help with the chemo lots of fresh veg - no dairy - lots of good water all along the lines of the Budwig diet - I also hear from various NHS sites that exercise is a great help although I was exhausted by the time the 3rd FLOT finished - June 3rd - I was back walking and playing golf within 2 weeks and light jogging last week but tired this week. Found 3rd FLOT hard work and had to do something on the nutrition front as the steroids had me eating 7 times a day.

Which part of the country are you in?

Make sure you have all your questions written down and write down the answers given to you with the persons name - you have to be your own detective in this process - but everyone is here to help as are all the medical people you meet - everyone reacts differently to the protocols and each person is unique in how their bodies adapt to it all - nutrition and exercise help a lot.

Glad to see you are supporting your Husband on this journey and asking questions.

Good luck.

John

oyita
Posted by

Dear John,

Thank you very much for your response, I am really glad to read about your experience. So if i understand correctly, with the FLOT you had nothing left in your lymphs after the first round of treatment? 

As of today, for husbands case the 4th dose has been the hardest. He has a lot of fatigue. We tried to keep the regular table hours to eat 3 meals and 2 snacks. It was difficult for him to keep up with the necessary liquids as well. One of his main worries let's say was that he could not get a good nights sleep, because he had to get up every hour for a WC break. Did you have this issue with your treatment?

These 2 next days he has the tests, so we will know a lot more by Friday, and are certainly very excited. I will take your advice to take notes, as sometimes you just forget. We do have daily diary of symptoms and pills, etc. But it is certainly good idea to also write down the answers given to us.

We are not in the UK, however, here the general treatment protocol is also 4+surgery+4 rounds of FLOT. However, our oncologist told us that depending on the pathology after the surgery or how they see the tumor responds, they may tweak the protocol and switch up to RT for example.. 

I cannot wait for the appointment with the oncologist on Saturday, hope these days pass flying by.

PingG25
Posted by

Hi Oyita

If was after 3 FLOT that I had the PET scan which gave me the results of a reduction from SUV 14.7 to 5.8 and no signs in the Lymph. But nothing is 100% certain but it does help the mind knowing it works. 

We are all different and I do not know if your husband was on steroids to counteract sickness but that for me was the most difficult to cope with. I believe drinking plenty off good water helps even you are up lots of times during the night and trying to get exercise - fatigue is an issue but exercise helps.

I also read information on www.yestolife.org a UK site.

Be strong together, we had lots of emotional times and hugs galore - its a rocky road for the person looking after the person going through the chemo and surgery but laughter and humour help a lot as well as good wholesome food as much as you can eat - I was eating almost 7 meals a day due to the steroids - soups and freshly cooked mainly vegetables and fruit - I am back to normal now 3 meals a day and lots of water and have been alcohol free for 200 days - but each to their own and do what makes you both happy. I am not sure anyone has a 100% answer to the prototcol but everyone is doing the best they can do and learning new things each day.

Good luck with it all

Regards

John