I'm 44 years old, 2 years post Ivor Lewis for adenocarcinoma and now residual disease has been detected outside the oesophagus (likely a lypmph node) that is starting to invade back into the oesophagus from the outside inward.
Anyone had recurrence of oesophageal cancer? If so I am wondering what treatment was offered, in particular whether you had a second oesophagectomy / further surgery?
Also, if anyone has had a full oesophagectomy (I had a partial) I would be keen to hear how quality of life has been.
Thanks
Written by
Brett77
To view profiles and participate in discussions please or .
Hi Brett, we're practically the same age, I'm 44 in June. I had my Ivor Lewis two years ago in May.
I'm really sorry to hear of your recurrence, it's my biggest fear. In my case they took out pretty much all of my oesophagus with the join being about level with my collar bone.
Quality of life is good. I work, I play, I do most of the stuff that I did before, but just have to be careful with what and how much I eat, as we all do, and my fitness is shot.
I've no idea if further surgery is an option that is considered but I really hope they offer you something and would encourage you to take it.
Hi Dan, thanks for your message. My recurrence is technically outside oesophagus but pushing against it, likely a lymph node. Seen on CT and then confirmed with endoscopy.
I bounced back from surgery ok and recovered a good portion of my fitness. Used to cycle 200+ km/h a week. Have been doing around half that post surgery.
I’m fascinated to be taking to someone my age who had the same thing!
I’m in Australia, they only took out 21 nodes, id they’d taken more I likely wouldn’t have had a recurrence!
Any idea what caused your cancer? My docs and I are mystified in my case - never smoked, hardly drank, very physically active, not overweight, was 41 at diagnosis and no family history of cancer.
Well I was a smoker, and do enjoy a social drink or two, was very physically active until my mid 20's.
On reflection I had reflux for years but never realised, when I was diagnosed they said that if previously had Barratts (?) and it is that which developed in to the cancer.
The first I knew of it was when I had difficulty swallowing. The GP fobbed me off with Gaviscon which delayed an endoscopy by a coupe of months. I was diagnosed as stage 3b, so a whisker away from not being a viable candidate for surgery.
People of our age are a relatively rare breed in this world.
I was 3b as well. Smoking and drinking are more associated with squamous.
I had difficulty swallowing, spoke to a friend who’s a doctor and he said I didn’t fit profile for cancer. GP said same and started me on nexium for a few months to heal a potentially damaged oesophagus. Finally a gastroenterologist diagnosed me but couldn’t prove it was cancer from biopsies so surgeon and encologists wouldn’t see me. 3 scopes later and he got the evidence he needed. Whole process took months!
Agree about people our age. I’m stunned (and delighted) to be talking to someone my age.
Sorry to know of your diagnosis.I was 39 when oesophagectomy was done, 3 years sicne surgery.
Adeno is more to do with lifestyle related items, including smoke, alcohol acid reflux (GORD) etc. Squamous can be genetic. Adeno is very painful in establishing and is aggreesive tissue development once established. Squamous can take long time to establish and be completely painfree till stage 4 diagnosis. Not throwing in metasases in the equation for now.
quality of life is at par with partial/normal oesophagectomy. So nothign to worry about. the remaining oesophagus and stomach can be removed and most things can be intervened internally. If only surgical option available, else there are other non surgical options which may be considered in your case. Your MDT will discuss best ption and your consultant will advise you in due course options on the table.
Recurrence in the 30's and 40's is not documented, because the Oesophageal cancer itself is not very well detected in this age group in time for research database to be had. This is one of the personal project of mine, when I am persistently advising this age group about the acid reflux.
Re number of nodes. please dont worry too much on that. This is each surgeon's discretion at the time of the surgery. Its hit an dmiss and typically with a plenty of margin of safety hence a large number is removed. I believe mine were 24 or something. SUgegst not worry too muhc on that, because its not a definite science. Just unformtunate situation. Stay strong and keep optimistic outlook.
You are doing great in regards to the cycling fitness. Keep it on.
Dan is lucky to be having scans at 6 months on his request. I was told no scans from day 1 post discharge and only verbal follow up, and now dont remember when I last seen my surgeon. Anyways not worried at all.
Brett: I am older than you - 64 when diagnosed, but similar otherwise - no drugs, no smoking ever, very minimal alcohol and no reflux. I was diagnosed with stage 3b - regional spread. I underwent a full esophagectomy because I had 2 large tumors, one distill and one proximal, after undergoing chemo and then chemo-radiation. I am now almost 2 years post-surgery and so far all CT scans have been clear.
Life is different but you definitely adapt. As others have said, eating is the main issue. You have to be very careful. Dumping occurs when you are not. I also had abdominal adhesions (scarring) from the surgery that was very painful after meals, but I found a PT practice that managed to dissipate the adhesions. I am still uncomfortable after meals. And I can't eat much at a time, so maintaining weight is a daily grind.
Thanks for all of this info VBCardinal. Can I ask, What happens with a full oesophagecyomy- does the stomach get attached to the throat or do they insert a part of intestine first?
For me (you may be different) since one of the tumors was proximal (up top near the voice box) they had to take out virtually the entire esophagus. In fact, the surgeon was so concerned that just before my surgery, he came in and asked me if it was necessary, did I grant permission to take out my voice box and breathe and talk through a tube in my throat for the rest of my life (I said NO). My surgery was not an Ivor Lewis. It was way more invasive than that.
To answer your question, they take out the entire esophagus and pull the stomach up and "roll" it into a tube and reattach it.
So when you eat post-surgery, your feeling of fullness is high up in your chest!! It's different.
It was quite a journey, but you have to get up every day and say to yourself "what can I do today to make my chances of survival better." And then go do it. Focus on the process, not on the result.
Don't be concerned about what life will be like on the other side of your journey. You will adapt. In some ways, oddly enough, life is better. Not saying that I wanted to have to fight cancer for a year. But life is not terrible at all.
And another tip: use all the pain medication they give you! Don't be a martyr. Don't be afraid of becoming addicted. You won't. TAKE THE OXYCODONE if you need it. It helps in the recovery.
Thanks. Ok not sure what the plan is, more surgery, chemo or radio. Not looking forward to any of it! Oncologist thinks more surgery is my best chance, see what the surgeons are prepared to do...
standard oesophagectomy offered in the UK is also called Ivor Lewis two stage surgery which takes out 1/2 of oesophagus and 1/3rd of stomach approximately. This is what I had and where "oesophagectomy" is mentioned in this forum.
Total oesophagectomy aka three stage; means total oesophagus is removed and the third cut comes from the shoulder/neck side. This is mainly seen is advancing squamous cell type surgical procedures.
I had to repeatedly ask for scans, they weren't offered. I highlighted that being younger than most, and with dependents, I could do with as much notice as possible if it came back.
Sorry to jump on your post, I think it’s a good idea to keep requesting CT scans I really wish we had asked for them regularly I was always surprised that they didn’t do CT scan routinely only if you had any symptoms. So after what’s happening with my hubby I would definitely recommend pushing for scans, his was only picked up by CT scan which was requested by CNS nurse after he complained of pain at surgical site, turns out he also had a unhealed fractured rib which was causing his pain no symptoms from the cancer.Sacha
Hi Brett I was 48 when diagnosed and am now 11 years post op. I had 44 lymph nodes removed. My child minders husband was the same age as me and diagnosed 4 weeks after me unfortunately his cancer came back in his pelvis. we had a feeling it was air quality that was a factor in our cancer as he was a Lorry driver and 2 more of his colleagues were diagnosed with the same cancer, 1 of them a non smoker and due to occupation none of them drank much at all, mine was down to silent reflux and the fact I worked in pubs and clubs for 15 years. Good luck stay safe
Hi Brett I’m really sorry to hear of your recurrence, my husband who is 50 has just found out that he also has a recurrence of his cancer he is also 2 years post op so I will be following your post, we don’t know what treatment he will be offered yet, his case will be discussed at MDT meeting next Wednesday. Wish you all the best with your treatment. Take care x
A little update on my husband, he has spoke to consultant and they are going to give him more chemotherapy CX for 6 cycles and checking on progress after 3, they said he had a lesion on his liver too which is worrying but will keep an eye on it. So it’s round 2 here, husband not coping well with the the news this time but we are taking it a day at a time, hope things are going ok for you, it’s such a set back and a very worrying time but all you can do is take whatever treatment is offered and any help you can. Take care Brett and all the best x
Hi Shoad, I’ve been thinking of you. Thanks for the update. Am I correct in thinking that the recurrence is in the oesophagus? Is other treatment an option post chemo or is chemo essentially the plan?
In Aus they’re combining chemo with immuno, should that be considered?
Hi Brett For now they have just said chemo they haven’t mentioned any treatment past that. It says he has local regional recurrence in the area he had his surgery so I guess somewhere around the anastomosis from his oesphajectomy. Interesting about immunotherapy. I would hope they would explore other options if this chemo doesn’t work. X
From OPA perspective I also think to utilise the clinical knowledge available in OPA's realm to benefit patients like yourselves for now and as well for other patients down the line, in some form. If you can contact the charity's headoffice they may be best placed to support you in addition.
An update on above. PET has shown an additional tumour in the lower abdomen, likely a lypmh node. Interestingly its where a surgical staple is used during Ivor Lewis to set aside an artery no longer required. Surgeon suggested it be biopsied endoscopically to see if definitely cancer. Radio oncologist thinks its cancer and didnt want to go down radio path as believes a more systemic treatment is necessary, this same view is held by medical oncologist. What would you do - test it for cancer? Different specialists have different views here...
At this stage, I'm due to have a chemo port inserted on Monday (anyone had one of these put in?) and start chemo on Tuesday using FOLFOX program with immunotherapy. Plan is 6 sessions of chemo over 12 weeks but immuno to continue beyond that. All thoughts / input welcomed
Hi Brett have you looked at Charlie's circle it's a group for People who have had a recurrence of the cancer. It's also under the OPA banner if you search for Charlie's circle and click the link to join. Take care Lizzy
I'm 42 with adeno gastric originally diagnosed as locally advanced Stage 4 in August 20. I had my 8 rounds of FLOT through my centreline port. Other than a bump below the skin which my kids find interesting to press its no hassle and does not effect life day to day e.g. showering, swimming etc post healing.
I just had some brusing and minor aches (tightness really) post surgery but its no hassle really and nothing in comparison to where you have been. Each nurse whether it was for bloods, chemo delivery or CT contrasts all said how easy it made their life so I was glad I had it.
Good luck with the treatment, get into the rhythm of it, get to grips with what works for you in cycle 1 and then knock them down 1 by 1 mate.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyways not worried at all.
Oesophageal Cancer Awareness Month
oesophageal cancer
Squamous cell carcinoma 
Reactive Hypoglycemia & Oesophageal Cancer Treatment.
Lump found in oesophageal stump.
