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nowayback
@nowayback

Posts: 10
Joined: Oct 18, 2018

Oesophageal tumour

Posted by @nowayback, Tue, Nov 20 11:50am

Hi

This is extremely difficult to explain, I am a 54 year old male who has always been very positive, looked after myself, eaten healthily & exercised regularly & never really been over weight (11st 11lbs height 5` 8") I`ve had health issues but nothing like what I`ve gone through in the past few years.

It all started in July 2016 when I had an operation called an Ivor Lewis Oesphogectomy which involved the removal of a large non-cancerous tumour from my oesophagus, by stretching my stomach up to create a new link between my throat & my stomach. Whilst the operation was initially successful after 5 days I became very ill & following investigations it was thought that as the tumour was very high up near my voice box, the blood circulation wasn't sufficient & caused the join to die. Unfortunately this caused 2/3rds of my stomach to be burnt back & other complications including damage to a lung due to leakage of necrotic fluid. I had an immediate emergency operation to basically save me which involved tying off what was left of my stomach & inserting a jejunostomy peg feed for liquid food & drink. My remaining oesophogus was pulled out externally to my throat where a stoma drained my nose & saliva. I ended up being in ICU for 11 days & spent 2 months recovering in hospital. I only realised afterwards how ill I was although this was more obvious physically as I also lost another 2st in weight. When I was released I was told to get as fit as I could in readiness for another major operation in order to re-connect me. I was also diagnosed with depression but this was to be expected having gone through what I had at the time.

After recovering fairly well, considering the circumstances, nine months later in April 2017 I was deemed fit enough to undergo an operation called a Colonic interposition which involved transplanting approx 14" of my large intestine to provide me essentially with a new working oesophagus. The operation again went well however unusually whilst the lower join healed the upper join failed to. I spent another 2 months in hospital waiting for it to heal but it wouldn't so the hospital made the decision to discharge me home with my peg feed & stoma yet again. I was closely monitored & underwent regular bi-weekly endoscopic stretches (dilations) of the new oesophagus until by the September the join eventually healed. From that time I would have the stretches but I also carried out daily dilations manually by swallowing a rubber dilator (2 feet long) I cannot say this was very pleasant but having gotten this far it was important to maintain what my consultant requested in order that I may one day eat & drink again.

Life suddenly got much better as for the first time in 18 months I began to eat & drink again. No it wasn't a case of back to normal by any means as I could only really manage soups, etc but I gradually moved onto to soft food like mashed potatoe, etc. I cannot begin to explain how wonderful it was to be able to taste & swallow again except to say it was like having my body back again after being ravaged by major surgeries, so it was truly fantastic. However it was only the beginning of a long rocky road to what I thought was my full recovery. Throughout the next few months things seemed to improve if only very slowly. Eating & drinking was difficult but I felt I was getting there even though I still had to have the hospital dilations & do the daily dilations myself. I was also still having to insert water & use the peg feed for nutrician something which the consultant said was important as back up as I could not eat/drink enough to fully sustain my 9st body.

However I began to get chest infections which caused me problems trying to eat & drink. These became more & more frequent & I was getting more & more frustrated as it resulted in my eating becoming harder. It culminated in May when I suddenly had a bout of gastroenteritis. This proved to be horrendous as not only could I not tolerate any food/drink orally but also nothing via my peg feed. I spent 9 whole days in bed gradually deteriorating & can only say it was probably the worst I had ever felt in my life, including the previous surgeries. I lost another stone in weight, was delirious at times due to dehydration & fell into a further deeper depression. Amazingly I wasn't hospitalised & really don't understand why I wasn't at the time but my recollection of that time is still hazy & no doubt I probably argued that I didn't want to go back in anyway. I should add very importantly that during this episode it the first time I was physically sick (in 2 1/2 years since it all began) so it was the first time as such I was sick using my new oesophagus. Being sick normally is quite distressing to an able bodied person anyway but the physical action for me was both painful & shocking also as I really didn't know what was happening to me internally as it wracked my body further. After recovering a few days later I had a swelling on my throat externally on the location of my operation scar which basically swelled to the size of a golf ball. This eventually burst & left a small hole in my throat but even at that point I didn't realise what had happened. It was only when I tried to swallow some water that it poured out of the hole in my throat. I was in a complete state of shock obviously with the thought that there was something seriously wrong. I went back to the hospital & scans revealed that my oesophagus transplant had basically shrivelled up & effectively died due to lack of blood circulation (or other?) & the upper join of the had ruptured & so any fluid would discharge from the hole in my throat. They also found a fistula (a hole or link) from the oesphogus & my lung.

I cannot tell you how devastated I was at hearing this news. It was a full year & a month on from having the operation & it had sadly ended this way. The consultants are at a loss as to explain why this happened except to say that my situation is unique to them & suffice to say that a medical paper is now being written about my unfortunate situation as we speak. Having lived with the situation now for the past 6 months, they decided that nothing could be done directly without making things worse. I have recently been back to my consultant who has informed me they are looking at possibly carrying out another major operation in March 2019 which is called a Jump Graft, using a piece of my small intestine this time, in order to reconnect me. Unfortunately they have only carried out this operation on patients requiring short lengths in the UK but apparently they have done the longer grafts in Australia & America but I don't know how successful they have been. I am waiting for further information on these nearer the time as the team of consultants is put together. However, again, unfortunately my consultant has advised that due to a possible issue with my immune system they are not very confident that the operation will work. (10% chance it will work) So in the meantime I am coming to terms with the distinct reality that I may have to rely on my peg feed & stomas for the rest of my life. Not a very positive outlook & it would seem with no way back.

What I am hoping from posting this story is that someone somewhere will either have gone through what I have or knows somebody that can help me come to terms with my situation. After having been through all this only to be told that any operation is unlikely to improve my situation has left me feeling in despair & suicidal at times & I seem to have nobody to talk to that understands.

That is my story.

REPLY

Wow no Interest in this at all then, I may as well go ahead & kill myself now then!

@nowayback

Wow no Interest in this at all then, I may as well go ahead & kill myself now then!

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Hi @nowayback, Despair, depression and suicidal thoughts often accompany a complicated diagnosis. You are not alone. Although I can imagine that the lack of response here made you feel more alone than ever. For that I apologize. We are here. Fellow members have talked about mental health. You can see this discussion started by @alpaca. I hope more will join in to share their experiences.

– Depression and anxiety, and Head & Neck Cancer https://connect.mayoclinic.org/discussion/depression-and-anxiety-1/

@lsecrist @wcbanta and others also share their experiences with colonic interposition here:
– I had a colon interposition 7 years ago https://connect.mayoclinic.org/discussion/i-had-a-colon-interposition-7-years-ago-after-a-doctor-punctured/

NoWayBack, I assure you that the lack of response here is not an indication of lack of caring. You certainly are facing a very difficult situation with few answers and few people who have travelled the path before you. Is it possible for UK doctors to consult with specialists at Mayo Clinic?

Hello @nowayback You have a devastating story to tell. Cancer is always a rollercoaster but you have been up and down more than most. I'm a head and neck cancer survivor so far and can eat soft foods. Some of my friends are tube fed. I don't know anyone who has had the esophageal cancer you have had but there are many things that go wrong with head and neck cancer surgery too like free flaps failing, fistulas forming etc. It is traumatic, disfiguring, disabling. I really do understand the horror of it all.

It sounds as if there is a slither of hope for you to have more reconstructive surgery but as you yourself say, it's important to be realistic about it. There will be esophageal cancer support groups on the Internet. As a patient you can write to the people in the UK who have carried out the surgery on others. I mean by this that you can sort of empower yourself by doing your own research, making your own inquiries. That might sound too hard, undoable, but having a sense of agency might help you cope. The fact that the medical team has given you this possibility is something.

The other thing is having as much psychological help as you can get. You have been through the mill and need and deserve every bit of help you can get. I have found it helpful to join cancer support groups both local face to face and online. Wishing you well.

@colleenyoung

Hi @nowayback, Despair, depression and suicidal thoughts often accompany a complicated diagnosis. You are not alone. Although I can imagine that the lack of response here made you feel more alone than ever. For that I apologize. We are here. Fellow members have talked about mental health. You can see this discussion started by @alpaca. I hope more will join in to share their experiences.

– Depression and anxiety, and Head & Neck Cancer https://connect.mayoclinic.org/discussion/depression-and-anxiety-1/

@lsecrist @wcbanta and others also share their experiences with colonic interposition here:
– I had a colon interposition 7 years ago https://connect.mayoclinic.org/discussion/i-had-a-colon-interposition-7-years-ago-after-a-doctor-punctured/

NoWayBack, I assure you that the lack of response here is not an indication of lack of caring. You certainly are facing a very difficult situation with few answers and few people who have travelled the path before you. Is it possible for UK doctors to consult with specialists at Mayo Clinic?

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Hi Colleen
Thank you for your kind response & no need to make any apology on behalf of people, we are all going through a very trying time.
I reacted mainly as you say out of sheer frustration & despair for my predicament so I should be apologising.
My frustration is that I am unable to do anything to help myself & whilst there is a small chance that another procedure might work it's very unlikely as I explained. The feelings of emptiness & hopelessness are so strong as I am constantly thinking about my situation all the time I am awake, mainly because of my on going symptoms & I guess I just cannot accept that I might be like this for the rest of my life leading to me having the awful thoughts of ending it all.
Your question about my consultant contacting the Mayo clinic is interesting as I have been told that they have contacted specialists in Oesophageal issues around the world but with no real luck apart from being notified about the Jump great procedure.
I am not sure how I go about contacting the Mayo clinic perhaps you can please provide me with some idea of how to do this thanks.

@alpaca

Hello @nowayback You have a devastating story to tell. Cancer is always a rollercoaster but you have been up and down more than most. I'm a head and neck cancer survivor so far and can eat soft foods. Some of my friends are tube fed. I don't know anyone who has had the esophageal cancer you have had but there are many things that go wrong with head and neck cancer surgery too like free flaps failing, fistulas forming etc. It is traumatic, disfiguring, disabling. I really do understand the horror of it all.

It sounds as if there is a slither of hope for you to have more reconstructive surgery but as you yourself say, it's important to be realistic about it. There will be esophageal cancer support groups on the Internet. As a patient you can write to the people in the UK who have carried out the surgery on others. I mean by this that you can sort of empower yourself by doing your own research, making your own inquiries. That might sound too hard, undoable, but having a sense of agency might help you cope. The fact that the medical team has given you this possibility is something.

The other thing is having as much psychological help as you can get. You have been through the mill and need and deserve every bit of help you can get. I have found it helpful to join cancer support groups both local face to face and online. Wishing you well.

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Hi Maureen
Thanks I appreciate your response also. You have probably seen my reply to Coleen.
I understand your comments about trying to be able discuss matters with people that have had similar problems but unfortunately there doesn't seem to be anyone. I have asked my consultant & been told that my situation is 1 in hundreds of thousands so very rare indeed. They are trying to put me in touch with someone though so hopefully that would be beneficial. Where I have been ill for so long it's also the impact socially as I don't really want to mix with people due to my constant coughing up snot & saliva I just don't feel comfortable being in that stat in public or privately with friends & relatives. I've noticed anyway that I am becoming more & more isolated as people visit less & less. I am reluctant to go out due to the way I am so have less & less in common with people & so it goes on. I am still waiting for psychological help due to long waiting time & just feel I am going further & further down in my mood.

@nowayback

Hi Colleen
Thank you for your kind response & no need to make any apology on behalf of people, we are all going through a very trying time.
I reacted mainly as you say out of sheer frustration & despair for my predicament so I should be apologising.
My frustration is that I am unable to do anything to help myself & whilst there is a small chance that another procedure might work it's very unlikely as I explained. The feelings of emptiness & hopelessness are so strong as I am constantly thinking about my situation all the time I am awake, mainly because of my on going symptoms & I guess I just cannot accept that I might be like this for the rest of my life leading to me having the awful thoughts of ending it all.
Your question about my consultant contacting the Mayo clinic is interesting as I have been told that they have contacted specialists in Oesophageal issues around the world but with no real luck apart from being notified about the Jump great procedure.
I am not sure how I go about contacting the Mayo clinic perhaps you can please provide me with some idea of how to do this thanks.

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I'm relieved to hear back from you, @nowayback. I have a few thoughts to your comment.

Contacting Mayo Clinic
It is possible that your specialists have already consulted with Mayo experts. However, you can inquire with no obligation at Mayo Clinic yourself through the International Services https://www.mayoclinic.org/departments-centers/international

Isolation and connecting with others
It is so discouraging that the rareness of your condition and unwanted side effects are isolating you more and more, not only medically, but from friends and generally being with people. While it is a weak social proxy, I wonder if you would like to participate in some of the other non-oesophageal discussions on Connect. Here are a couple that may interest you:
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/
– Gratitude Discussion Group https://connect.mayoclinic.org/discussion/gratitude-discussion-group/

@nowayback Try not to be too isolated even if you have to deliberately schedule some social contact into your week. I took a computer course when I was still in the heavily scarred stage – one for old people who tend to have their own physical issues anyway. There are usually exercise classes for people who are in rehab for cancer and other illnesses. Learning a new skill from home can be useful too – an online course maybe. Snot, saliva and mucous are hard to manage (I know a lot of laryngectomees), I agree. Ask your team about some tips and tricks to handle this when with others?
As Colleen says, participating in online discussions can be a way of staying connected too. The one for advanced cancer could be very helpful – you get to know the people and it's a good substitute for the real thing. Mayo is fantastic but a dedicated forum for your cancer might help. I can't check this one out because you have to join but it looks good. https://www.smartpatients.com/forums/esophageal-cancer. Hope you get to meet a fellow patient soon.

Hi Coleen
Many thanks for your email I will look at making contact, I very much appreciate your help on this.
I will let you know how I get on.
Thanks again

@alpaca

@nowayback Try not to be too isolated even if you have to deliberately schedule some social contact into your week. I took a computer course when I was still in the heavily scarred stage – one for old people who tend to have their own physical issues anyway. There are usually exercise classes for people who are in rehab for cancer and other illnesses. Learning a new skill from home can be useful too – an online course maybe. Snot, saliva and mucous are hard to manage (I know a lot of laryngectomees), I agree. Ask your team about some tips and tricks to handle this when with others?
As Colleen says, participating in online discussions can be a way of staying connected too. The one for advanced cancer could be very helpful – you get to know the people and it's a good substitute for the real thing. Mayo is fantastic but a dedicated forum for your cancer might help. I can't check this one out because you have to join but it looks good. https://www.smartpatients.com/forums/esophageal-cancer. Hope you get to meet a fellow patient soon.

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Hi Maureen
Yes it's so hard but I know that I must make the effort. I've spent the last 3 years telling myself that 'once I am back to normal' then everything will be fine but now I know that will happen so it's up to me to try to adapt to the change. I still can't quite come to terms with the fact I may never be able to eat or drink again & the implications of this frighten me as if I am losing something major(which it is obviously) One key thing is that if I try to keep busy doing stuff then I can forget for a while but this is generally in the morning before I have to go on my feed machine for 18hours a day. It's the day in day out routine of that & springing water/tablets that gets to me too, as if a reminder of the whole tragic situation.
Anyway thank you for the links I will explore them.

You are welcome. Wish I could help more.

Dear @nowayback, I have been following this thread since your first message and think about you daily. Regrettably I am unable to offer constructive advice or guidance to help you navigate this difficult path, however, I hope in some small way it helps to know there are folks out here who are thinking about you and wishing you continued strength and optimism.

I am so sorry about your horrible outcomes of these terrible surgeries. As a head and Neck cancer patient I can only say that you are not helpless to help yourself. You can and should conduct your own research into other cases, papers, surgeries, etc. to take an active part in your treatment. In my case it also meant seeking out treatment at a distance from home, at Mayo Clinic Rochester. Once there, I already had a good handle on the prognosis and treatment available for my rather rare cancer location. The internet is a great tool, and you have more time and motivation to use it than your doctors and consultants. New things are being tested and attempted daily, and it is up to you to discover these things. Take a serious look at a MAyo CLinic referral. At least a consultation by your doctors could be helpful. Don't give up hope. Sometimes that is all we have left.

@catlyn

Dear @nowayback, I have been following this thread since your first message and think about you daily. Regrettably I am unable to offer constructive advice or guidance to help you navigate this difficult path, however, I hope in some small way it helps to know there are folks out here who are thinking about you and wishing you continued strength and optimism.

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Thank you Catlyn I know it's very hard to accept but maybe in time I will. It is comforting to know that there are people out there who have equally horrible experience so I try to say to myself I am not alone.

Hi Sue
Thank you for your response & I trust that you are recovering from your own experience.
Yes I have been doing some research using the Internet but surprisingly there doesn't appear to be much about my next planned procedure for a jump graft. There is plenty about my first two ops the Ivor Lewis & the Colonic interposition but very little on the jump grafts. I have spoken to my consultant & he has performed the jump graft procedure but only in short version & the long version has never been performed in the UK. They have been done in Australia & the USA so they are looking to possibly get someone who has to assist.
I will as you say make inquiries at the Mayo clinic as you never know.
Thanks again

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