Recurrence without any symptoms

My dad had surveillance with imaging but it didn't pick up that it had returned. He had symptoms that were initially thought to be sciatica but turned out to be a tumour in his spinal cord however his symptoms began in Feb 25, he had a clear CT in March 25 and it was only at the end of April did an MRI pick it up. Not exactly what you asked for, just even with imaging surveillance there's no guarantee things will be picked up. I'm sorry for your loss. 

I am so sorry for your loss. I too lost my husband very quickly after metastatic disease was detected. Three years after having curative treatment and without imaging included in his surveillance. 

At the time, I felt his Consultant was negligent. But on reflection it was perhaps better for us to live our lives not knowing as earlier detection would not have changed the outcome. And it was a blessing he only suffered with symptoms for 3 weeks.

Clinicians are divided as to whether or not surveillance with imaging is beneficial or not in terms of prolonging survival or impact on mental health. There is an ongoing clinical trial to investigate this.

In your husband’s case I find it unusual that he was declared cancer free such a short time after receiving curative treatment. It is more usual to assume micro metastatic disease is present up to 5 years or more.

I am under surveillance with imaging. My Consulatnt’s view is that he is only doing it because he is told he has to. He says all he sees before him is a lady who looks very well. He knows the impact scanxiety he has on myself and family. I get the impression that he would prefer me to attend clinic when symptoms do present.

I do have residual cancer and at the moment symptom free. I am hoping that when I do get symptoms I will not suffer for long.

i hope my experience helps you come to terms with your loss. I did experience PTSD because my husband was taken so quickly but as I say on reflection, years later, not having imaging did have some quality of life benefits.

Written with my sincere condolences x 

I completely understand the sense of contradicting feelings, to know would have been dreadful but a sudden death when they are supposedly healthy is so surreal.

I hope that your circumstances continue for as long as possible and I thank you for your reply.

My experience is different in details to yours, but it does raise some related questions I think.

My wife was diagnosed with primary oesophageal cancer in September 2019, and then had chemotherapy and radiotherapy for a few months thereafter, followed by an Ivor Lewis oesophagectomy in February 2020. All that was considered a success, and the pathology results were excellent - so she was considered disease free by mid 2020. The subsequent follow-ups were slightly hampered by the Covid epidemic, but they consisted of face-to-face meetings with the surgical team about every six months or so, just to check how things were going. Essentially, if the medical team thought that my wife looked healthy at each such meeting, they were happy with the outcome.

No imaging checks were ever done: we were told to remain watchful for symptoms but, otherwise, just to carry on as normal, and to enjoy life.

By mid 2022, my wife developed a cough that wouldn't go away. Yep - just a cough. So we approached the medical team, and my wife was scanned in September that year. Two secondary tumours were discovered, and we were told that the disease was now incurable. My wife had a few months of chemotherapy in an effort to relieve the symptoms - and those helped - but she died about a year later, in October 2023.

I am still stunned and befuddled by what has happened, but I fully accept it, and I am satisfied that the medical team did their very best. However, I have certainly wondered whether or not some regular scanning checks post surgery might have detected the problem sooner, and might have produced some kind of different outcome. We'll never know.

The current UK standard is not to do routine post-operative scanning. However, as Rosiee has noted above, there is currently a study going on (I forget its name) which is investigating this very matter.

I send everybody here my love and best wishes. We are all trying to cope with a terrible situation.

PTP the study is called the Sarong Trial and I was on it in the increased surveillance group. Unfortunately it didn't help when I had a recurrence in June of last year so I wouldn't have thought it would have made much of a difference.

Bilious Bob said:

the study is called the Sarong Trial

Thanks. Indeed, I think it was your post on this very forum which made me aware of this study in the first place.

I am very sorry to read that you have had a recurrence though. What a bastard of a disease this is.

I send you my very best wishes. Stay strong!

I agree with everything you say. There is a high unmet need when it comes to treatment of metastatic oesophageal cancer. It’s a balance of starting any systemic treatment to relieve symptoms when the patient is well enough to tolerate it but not before it would significantly impact on quality of life. 
May I ask, did a Consultant actually say your wife was disease free? How would anyone know?

Theres a big difference between reporting no measurable disease and declaring a patient to be disease free. 

Rosiee said:

May I ask, did a Consultant actually say your wife was disease free?

That's a very fair question - and perhaps I was imprecise above.

No - I don't recall a Consultant using those exact words. What were told was that the surgery had gone perfectly, and that the subsequent pathology was as good as it gets: there was no evidence of cancer in any of the lymph nodes which had been removed. So the outcome was as good as could be hoped for.

But were also told that regular check-ups (of the kind I mention above) would continue for a few years after the operation - so I guess the risk of secondary cancer was always accepted as a distinct possibility by the medical team.

Looking back, I think it was probably just my own dumb, optimistic assumption that the whole episode had resulted in a complete cure. I've since learned what a horrible, pernicious disease this is.

I can see from your profile that you take a serious professional interest in this. So, as more complete information: my wife's cancer was squamous cell.

I send you my very best wishes for your own condition: it's a very tough thing to be handling on your own.

My sympathies to you, as you say, the similarities between the intial treatment and final outcome are uncanny.  As detailed by other replies, the clinical trial that varying Health Authorities are signed up to is SARONG, although I do believe that it commenced after my husband's surgical procedure.  I feel, from our own experience, that consideration should be given to the NICE guidelines.  It is very early days for us but having done albeit a little research online regarding studies that have been undertaken both in the UK and worldwide, the indication with recurrence appears to be that imaging surveillance should be in place following treatment.  

Again PTP, similarites between our partners.  The histology pre surgery was unable to completely identify whether or not his cancer was Adenocarcinoma or SCC. 

He had regular three monthly check ups with the surgical team, not oncology dept/Consultant.  At these appointments, there would be a general discussion regarding his heatlh, how he was coping with eating, happy with weight etc and at each appointment, I questione d the lack of scans/bloods.  The response that I was always met with was 'he has as much chance of it returning as any other person developing cancer and if it does return, he'll know abouit it'.  Sadly as per my original post, this was not the case, he was rediagnosed in hospital for another issue and was gone lesss than 48hrs later.  We were told by the surgical team that he was cancer free following his first outpatients appointment following his oesophagectomy (3 stage).