Stage 3 oesophageal cancer diagnosis

Pondfish 

you have a big decision to make in a ideal world no one should have to make this one . You have to consider the pros and cons and pos course your family .

i had my operation at 56 in August 2023 not saying it was easy in recovery and complete life changing and eating habits have to change . you will hear that everyone is different and its your own path to follow . but i feel that i made the correct pathway in my treatment and recovery . which ever path you take you will have a great team behind you .

good luck stay strong     

Hi Pondfish

I'm in exactly the same position as you and can empsthise completely with your predicament. I'm 60 and was diagnosed in March as T3/N2/M0 like you. However the advice from my MDT seems very different from yours. Everyone seems to he adamant that the operation is the best option, from the professionals to post-op patients on here.

I've struggled (and still am) with the prospect of having a reduced standard of life by having the operation but have come to the conclusion that it's a different life not a reduced one. I'm surprised that your team have given you such a negative outlook as this isn't the norm I can assure you!

Can I ask whereabouts your tumour is located? Mine is at the junction with the upper stomach. Whatever you decide will be right as it will be your decision but make sure you have all the information you need to have before making it.

Good luck to you 

Anthony 

Hi Pondfish,

Like Anthony, I am amazed that your cancer team seem to be giving you such a negative prognosis based on your diagnosis. I was diagnosed in Oct 23 and started chemotherapy in December. My consultant told me that my only course of action was chemo-surgery-chemo so I didn’t see myself as having any decision to make if I wanted to live. My operation was at the end of February. The pathology report on what they removed during the operation showed that the FLOT chemo had done its job at killing off the tumour and there was also no evidence of live cancer cells in any of the nearby lymph nodes they removed during surgery. I had 3 rounds of post-op chemo just to be sure and am now 21 weeks post surgery. I cannot deny that the journey to get to where I am has been the toughest thing I have ever had to go through and I have a long way to go yet. But I am enjoying life and taking even more enjoyment from simple pleasures like a walk on the beach, a cycle through the countryside, time spent with family and friends and relaxing in the garden with a good book and a glass of wine. I am slowly getting used to my new normal and determined to keep doing the things I enjoy as much as I can. I do not regret the pathway I chose as it has given me a future that I otherwise would not have had. I am 60 years old now and, although my 60th birthday didn’t work out exactly as planned, I hope to be around for my 70th and 80th. 
The decision of what course of action to take has, of course, to be yours. Please don’t be put off the treatment option by thoughts of the difficulty of it. With a good family support team around you, you can do it. Many have before you and are still here many years later to share their stories. Good luck with your decision. CB

Hi Pondfish,

My husband was told that the chemo/radiotherapy he had is about the same prognosis as the operation and not as invasive and less downtime. You obviously have a team of people looking at your individual case. Just go back to them prepared with questions and as everyone says, its your decision.

Hi Pondfish,

I'm so sorry that you've found yourself in this horrible predicament.  Like some of the others I'm a bit taken aback by the message you have received.  My staging was T3N1M0 and I was told that they were going for a cure. They removed a large number of lymph nodes around the oesophagus to make sure and the surgeon wasn't too concerned that one of the lymph nodes had cancer in it. His attitude was that he was removing it anyway. I think as others have said a careful discussion with your medical team might well help to understand reasoning  etc. Is one of the difficulties where the tumour is located? I understand it can be very complicated if its near organs like the heart, etc. Mine was located near the stomach so while hard to reach much less complicated in other ways. A possible question is around any medical trials that might be an option. Also does your medical team have the option of doing fully roboticised surgeries.  Mine was part robotocised and they had just started doing them fully with robotics around the time I had mine but I opted for a more cautious approach.

Take care and I'm sending you positive vibes for this very difficult decision. 

I am interested in the responses you receive. I have a similar set of circumstances to yourself except T3NOMO.

You do not specify which carcinoma type you have. Mine is adenocarcinoma. The choice of surgery has been removed due to my level of fitness. I have been referred to oncologists after a 5 week anxious journey of investigations of my suitability for surgery. I have not seen an oncologist yet  (neither medical nor radio).. But, from what I have read, chemoradiotherapy as a primary treatment has some limited effectiveness for squamous cell carcinomas as does immunotherapy. I haven’t seen anything hopeful for unresectable adenocarcinoma.

So I am anticipating having to make or have the decision imposed on me of doing nothing. Like you I value quality of life over quantity of life.  

Is there anyone in the forum who has had a positive experience in terms of progression free survival for stage 2 (T3N0MO) adenocarcinoma near to gastric junction?  Through receiving a non surgical treatment with intent to cure? 

Good luck my friend in making the right choice for you x

Hi 

I thought I'd mention the smartpatients.com forum for oesophageal cancer. They run an online support group for those with it and thru carers/partners. There prognosis and treatmentscare diverse so it might be useful to hear of their experiences.  They are mostly North American so it's interesting to see the differences/similarities in treatments. I attended one session at the beginning of my treatment journey and unfortunately I couldn't attend any further ones as it clashed with my son's activities.  

Take care

During my first investigation they found a hiatus hernia, extensive barrett's oesophagus and a T3N2 near the junction. I have had another investigation since and have now another tumour yet to be graded. I've had two lots of biopsies taken but been told they inconclusive due to the tumour being too ulcerated. I was due last week to have keyhole for further investigations but was cancelled due to fluid in one of my lungs. I was due this morning to have the keyhole again but once again cancelled due to the chest infection returning. My surgeon is keen for me to have the operation and told me if I made it through the operation with no complications and I survived 3 years, there is no reason I couldn't have an extended life. When I asked how common it was for the cancer to return, I was told 50%. I then asked if I just had chemotherapy what would be my life expectancy likely be, I was told 6-18 months. When I spoke to my cancer nurse she said due to my age and fitness I would get through the treatment and operation fine. She did however disagree with the surgeon on my life expectancy for chemotherapy only, saying I could have much longer and sometimes has a better overall survival. A week later I contacted her again and said I was considering chemotherapy only. She told me that she couldn't advise what to do and neither is a wrong decision. However she did say I would recover from the operation fine due to my age and fitness, although my chest infections are a worry. However she did state that she has seen the cancer return after the operation at which point many stop having anymore treatment. My anaesthetist told me that he would choose not to have the operation but was my decision, no right or wrong. Please don't think I'm giving up and I respect you all for going for the operation. I'm in a very dark place at the moment and seem to be constantly knocked back at moment with chest infections and as they are common post opp is worrying. I want to live and I am overall a glass half full type of person but it seems I'm told what they think I want to hear. The only 100% positive person is my surgeon. I do have another condition, 3 slipped discs that give me constant sciatic pain since 2008. That's treated with amitriptyline and Pregabalin although still in pain 24 hrs a day. 

Hi Pondfish

i really feel for you and this terrible decision you have to make but I can tell you from experience that the surgery is definitely the best option. I was given the option of immunotherapy/ chemotherapy or surgery, I chose surgery as this gives you a longer chance of life. I had my operation on 13/05/2024 and I’m now going through my post surgery chemotherapy and looking forward to along cancer free life ( that called being positive). The surgery isn’t pleasant but I survived the recovery is long but I’m getting there the chemotherapy is horrible but it’s something that will make you better and that’s what it’s all about.

My uncle said to me several years ago “ life is a gift your here once it’s not a rehearsal so enjoy it” I’ve never forgotten that and I live by it and I want as much life as possible 

I’m sure your family will respect your decision but wouldn’t you like to spend more time with them?

Best wishes

Alasdair

Hi Alasdair, congratulations on the success of your operation and pleased it's worked out for you and I wish you well. I have seen a doctor today regarding my lung problems and have been given drugs to help, and now on an emergency list for an x-ray. I am a positive person, and suffered a lot of sciatic pain for the last 16 years. I don't complain, take the drugs I'm told to and get on with it. I could, like many people who have that condition give up but I don't. This current condition is no different. I listen to surgeons, doctors, nurses etc and will do what it takes to get well. They have concerns regarding my lungs and a persistent cough atm that have appeared in the last few weeks, so if they are concerned, so am I. Another consideration is how my sciatic pain is going to be effected and if my drugs will still work. Before my drugs took hold, I was unable to stand let alone walk. I really don't want that again, so my decision is complicated. Regarding would I not want more time with my family, of course I would. I have a one year old grandson, a wife and two children I love very much.