Treatment Decision

Hi Travelhappy. So sorry that you have joined us in this club that no one wanted to join. How, as a layman you make the decision between two options I really don't know and I am glad I did not have to do it. The same two options were on the table for me but the team made it very clear to me what they thought I should be doing so I quickly told them to get on with it. I am 81 and now 16 months post the Ivor Lewis op. All I can tell you is I am doing well. It is not an easy journey but in my case I am very glad I have done it. Most of my story is written up in the 'new' section under 'post op journey' and I know a number of people contributed to the thread so I won't attempt to repeat it here. I wish you all the best at this worrying time for you. Make your decision quickly because one thing I do know is that time is of the essence in preventing the spread of this horrible disease.   

Hi travelhappy

Welcome I am a 67 year old grandma fit and healthy also who was diagnosed with OC on the 4th Oct I have T3N0M0. I am unable to advise you re treatment but I have been recommended neoadjuvant chemotherapy then surgery. I can understand how you feel about having to make that decision do you have a cancer nurse you could talk to ? I hope to start my chemo next week but there is a waiting list in our area so waiting for a cancellation..

wishing you well in your journey. I’m sure someone on here will be able to help I have found their stories and advice very useful since my diagnosis 

take care stay strong 

tricia.x

Thank you Anglers and Debden Doll. I am scheduled for an endoscopic ultrasound on 4 December so have been told I have until then to make my decision. However, for my sanity, I need to make this decision asap.

Hi

Welcome to the group, it's good that you've reached out. I don't know how consultants expect us to make decisions, but here's my story, I don't know if it will help or hinder your decision. 

In March 2021, aged 53 (generally fit and healthy apart from this) I was diagnosed with a 6cm squamous cell carcinoma tumour, T2N0M0, mid oesophagus. It was completely blocking my oesophagus, I couldn't even swallow water so I had a stomach feeding tube fitted and syringed Fortisip feeds, water and all medication through that. This was at the height of covid. I was told that in normal circumstances my treatment plan would have been chemotherapy and radiotherapy followed 6 weeks later by the operation. However due to the strains covid was placing upon the hospital they couldn't guarantee that they would be able to do the operation within a suitable timeframe so that option was not viable, and given my particular tumour, my age, my fitness level etc, they recommended definitive chemoradiation. There was still the possibility of the operation if needed, but I'd have a much longer timeframe to have it - 18 months. As it happens, my tumour amazingly shrank beyond what they expected after the first chemotherapy session, and by the end of treatment I was told there was no evidence of cancer.

Yesterday my consultant phoned to say that my latest endoscopy and CT scan were all clear. I'm 3.5 years all clear. 

I am on 'active monitoring' as I still have the area that was cancerous in my oesophagus. For the first two years I had tests every 3 months, this was an endoscopy and either a CT scan or PET CT scan. Do not underestimate the awful level of stress that constant tests put on you. Two years of constant scanxiety was dreadful. Now I'm on 6 monthly tests which are an endoscopy and a CT scan. No more PET scans. In October I had my 11th endoscopy. For me, they don't get easier with time. I have a special test, where they spray an iodine solution in the oesophagus to show up cancer cells. 

As for my oesophagus, it is scarred so doesn't stretch as much as it used to. I have to eat small bites of food and chew thoroughly. At times I still feel food going down very slowly, and this can be scary. Bread is the worst food. I'm on Lansoprazole for acid reflux - I didn't have it before treatment but I have it now. I stick to a plain diet and don't drink alcohol at all. But I'm here and I'm doing ok. 

There are other people on here who had chemotherapy, radiotherapy and then the operation. 

Let me know if you have any questions.

Amanda 

Dear Travelhappy 

I have just completed definitive chemoradiotherapy for T3N0M0 adenocarcinoma.  I am 67. I tolerated the treatment well but will not know how effective it has been until January when I will have follow up PET scan and endoscopy. My consultants did not sit on the fence when it came to QoL advice and steered me away from Surgery. Although I do have other health issues and achieved a borderline result in the PEX test and deemed high risk for 9 hour Surgery. 

The survival statistics I was given were 45% for Surgery and 30% for definitive chemoradiotherapy.  With a high rate of recurrence following both. 

My concern is that most of the data supporting the efficacy of definitive chemoradiotherapy in oesophageal cancer is based on squamous cell carcinoma. 

My understanding is that patients who do elect for definitive chemoradiation can still be reviewed for surgery after completing treatment. Although I was also  told the scar tissue after radiotherapy may complicate this.

if I were you. I would ask for efficacy statistics based on your specific tumour type and why it is you have to make the decision about neoadjuvant vs. definitive chemoradiation now ( if it is the case that Surgery remains an option after both treatments)  The answers to these questions may help you in your decision when balancing quality and quantity of life. 

Whichever you decide I wish you the best possible outcome x