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 

Thank you everyone. I appreciate everyone’s journey will be different but it is useful to hear your stories. For information I have a squamous cell cancer midway down the oesophagus.

Hi Travelhappy. I can certainly understand your anxiety regarding such a difficult decision, not least because you are not yet in a position to understand fully the choices on offer to you. 
I was diagnosed with Squamous Cell Carcinoma last May 2023 given the staging as T3N0M0. I was 63. After the CT scan and the PET Scan confirmed no spread it was assumed that I would have Chemoradiotherapy followed by Surgery. I had read an awful lot of information prior to my diagnosis, so I had a good idea what the treatment path might be. For your information I have uploaded all the details regarding the type of Chemotherapy, Radiotherapy and Surgery I was given, and it can be accessed by clicking on my username. 
I can confirm that the Chemotherapy (which began in June) and then the combined daily Radiotherapy (which started in July) did not give me too many problems and I coped well with the treatment. I had recently retired, so I’m sure not having the pressure of work helped a lot. On the 31/10/23 I had an Oesophagotomy and was home after 10 days. My recovery was generally good. The only thing I had to have (apart from lots of tablets) was to continue with a feeding tube which was inserted during surgery. This was a precautionary measure to ensure I was still getting essential nutrients, whilst my redesigned digestive system was given time to adjust to new eating habits.  had the feeding tube for approximately three/four weeks.

I am now just over a year since surgery, and since that time I have had a number of short breaks and holidays to Copenhagen (Feb) Bologna (March) Palma (May) and Taghazout in Morocco (November). I just mention this so that you can appreciate potential recovery.

I hope this is useful for you to read, and please feel welcome to post any other concerns you may have as you go through this next phase. The support on here is amazing and all people want to do is to try to help. Thinking of you. Take care, Julie

Thank you Julieanne., it was great to read such a positive story.

Good morning travel happy

I was wondering how the ultrasound endocopy went on the 4th do you have the results yet and able to make a decision regarding treatment? 
hope you don’t mind me contacting you

Sending love and positivity 

tricia 

Hi Tricia

I was thinking that I should put on update on here so thank you for reminding me.  I had a first appointment with oncology last Wednesday following the endoscopic ultrasound. The oncologist told me that at the latest MDT meeting all my results were reviewed and the recommendation was for me to have neoadjuvant chemo and radiotherapy followed 2 months after, by surgery. I had already decided to go down that route but it was reassuring to have it clearly laid out as the best option.

I have to have another CT next week to allow the calculations for the radiotherapy. Given the Christmas holiday period they anticipate me starting treatment in the first or second week of January. I’ve to have 23 sessions of radiotherapy (Mon -Fri daily) and at the same time 5 sessions of chemotherapy (once a week).  The chemo is Paclitaxel-Carboplatin and I have been warned it will be tough and they have given me a prescription for a wig as apparently hair loss is a definite with these drugs.  I am so relieved to have a clear plan , I would just like to get started, however, at least I can spend time with the family over Christmas.  It will be different though as my eating is very difficult now, I’m hoping it doesn’t deteriorate too much more although I know I will probably end up with a feeding tube during treatment.

Sending best wishes to you and everyone who is dealing with the challenge of this horrible cancer.

Beverley