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.