oesophagectomies have poor outcomes - Oesophageal Patie...

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oesophagectomies have poor outcomes

strangetimes
strangetimes

Have changed user name . I had a transhiatal oesophagectomy 6 years ago .

My twin brother is now receiving chemo for oesphageal cancer .He has been told that his cancer is not operable because a lymph gland is affected and it's position means it cannot be removed .

A recent scan shows that the chemo has shrunk the lymph gland cancer but has had minimal effect on the one at the junction of his stomach and oesophageous.

When he asked whether an oesphagectomy might be possible in the future if the affected lymph gland continued to improve he was told that it was not really worth considering as it was such a big op and the outcomes were usually very poor .

I can only imagine that what was said was more along the lines of the outcome for you is poor and it's not worth going through such a big op .

He doesn't know any details of staging . There is v little impact on his ability to eat food .

What are peoples views on this ?

25 Replies
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Hi there, depending on age and overall physical well being, I would definitely get a 2nd opinion I'm guessing too the stage of the cancer would have an impact. But still you are entitled to a second opinion. Has he been given any other options to treatment?

I do hope that your brother can be treated. My brother is going through treatment for bladder, bowel, kidney and spine cancer, they are giving him immunotherapy treatment as all other treatments havnt work effectively, it's always something to keep in mind.

Kind regards

June

strangetimes
strangetimes in reply to Popsic

Hi June ,thank you .

I think the same as you ,second opinion .

I've only talked to him on the phone since dx and it's so hard to work out what's happening .Has he misunderstood? Is he in shock? Denial ? Plus his dx has coincided with his wife being v ill .

I'm hoping to see him soon - even if I have to wear full hazmat!

strangetimes
strangetimes in reply to Popsic

I'm so sorry about your brother .Have a sister in law on immunotherapy which seems to be holding .But not much of a way to live I think .

I always said when I got cancer that I would rather be the patient than a loved one .And I still think that .

Popsic
Popsic in reply to strangetimes

Could be shock, denial, bless him, seems he has a lot going on, it was only my daughter and I when I was diagnosed, my son was in afghan and my ex husband left when 1st told it was pre cancerous. I always remember the look on her face.

I do hope your brother will go for 2nd opinion, hopefully once its settled in his fight mode will kick in.

Thank you, about my brother, he's had a few probs with the therapy but hopefully they've now sorted it out. It definatley is a different way to live, just wish they could find a cure for this dreadful disease.

So very sorry to hear about your poor brother. I have esophagitis right on the stomach and esophagitis junction and gastritis. Also gastritis. The meds dont help. I a also often now get a croaky voice and have to throat clear. I am speaking to a GI 3rd August. I desperately want an endoscope but with virus I doubt I stand a chance. Had this awful pain for 5 year. Reading your poor brothers news and yours worries me that when they do get round to it it will be now something similar. If the lymph heals then hes got to talk to them again. Bless you

Popsic
Popsic in reply to basten

Thank you Basten,

I am a practising Christian, which helps a lot, I truly believe myself and my brother were God led to where we are, had I been seen when I was supposed to be the cancer was so tiny it wouldn't have been detected, I wasn't due for another endoscopy for a year by then it would have been too late, I was postponed twice. My brother was unwell for a few weeks, he turned 60 in the April, had a holiday planned in May, I nagged him to go docs which he did when he came back, they scanned him but couldn't find anything, put it down to ibs, luckily his wife was having non of it and insisted on a 2nd opinion, when they did a CT scan they found a tumour deep in his bladder, they couldn't remove it as it had attached to 2 major vessels so 12 wks of chemo shrunk it, small enough to remove, but they scanned him again and found cancer in his sternum, another 12wks got rid of that, now the bladder cancer is dormant but its spread, hence immunotherapy, so far so good. My point is, do not worry about tomorrow, today has its own worries, everything happens for a reason, sometimes we don't understand why, but eventually it will make sense, good can come out of bad, if you let it. Have faith, stay positive.

God bless

basten
basten in reply to Popsic

Yes I'm afraid I am a great worrier which doesnt help. Try not to but when in pain and maybe no scope forthcoming I cant help it. Also I have another big issue coming up soon with psychiatrist and meds. Dreading it cos she wants to reduce which means I wont sleep and when I missed just one I never slept all night had massive panic next day out with daughter and by p.m thought my head was gonna explode until I took the sleeper again. I'm on bad stuff two years now Zopiclone Diazepam and since September after coming out of mental health hospital Mirtazepine too. The psych in there wanted me off. I wish now I'd done it when there under supervision but I had a terrible time. He blames my GP for keeping me on them. I cant stand not sleeping and tears ago I didnt sleep for whole week was in pain so bad they were still discharging me as CT scan ok I took an overdose...

Sorry to tell you all this but i have the eating pain on top . I am as i said Christian. I pray that he will give me strength and guidance. I hope you managed to speak to GP today or pharmacist. Keep us updated. Your brother is going through so much.

Popsic
Popsic in reply to basten

Oh bless you, you are going through it.

Make sure you explain your fears and concerns to you doc, they can't just stop your meds, it must be done gradually, like you I worry constantly, about everything, I know it's irrational but you just can't help it, I know exactly how you feel. I've been down the path your on, just make sure you don't go it alone. "Lean unto me all those who are weary", remember those words. Also what helped me through my op, my depression " Jeremiah 29.11.

For I know the plans I have for you" declares the Lord. " plans to prosper you and not to harm you, plans to give you hope and a future"

I was at a real low before my op, convinced I was going to die, praying for an answer, 10 minutes after my prayer my friend text me and said she was praying for me and this verse came to mind.

I hope this helps a little, always remember, you are not alone. X

basten
basten in reply to Popsic

That's so kind of you. You are a lovely caring lady. Yes I will read those words . It's strange. Like you I've prayed and suddenly out of the blue a call from someone saying how are you we at church have been praying for you. My daughter is a great believer in whatever happens God it always with us yesterday today and tomorrow.

You may have it but it may not work for you but I've bought the book "The Acid Watchers Diet' by Dr Jonathon Aviv. I know what you say about veg and fruit. He lists too everything that has a high alkaline effect. He does of course mentioned Barretts oesophagus how it can turn into cancer and like you felt I feel convinced I am going to die of something going on now way too long. I dont get burps, heartburn when I bend etc a lot of hiccups if I eat too much and it's always half way down my back through to shoulders and beyond sometimes. Last night I was foolish I ate some cheese too much just before bed and it was burning when I woke despite Gaviscon etc

I will hopefully keep in touch. Let me know how you got on at GP or pharmacist and dont forget take the PPI a 30 mins before you eat breakfast and dinner. Their effect he says can last up to 16 hrs. I never knew that. He also says no garlic onions mint choc coffee vinegar toms peppers honey berries are ok if balanced with acid neutralising almond soya rice coconut milk . Raw carrot celery cucumber banana pear once a day for snack that's 225 g of fruit which isnt a lot. He has a healing one week starter phase including a blueberry smoothie (no dairy milk) I've gone on a lot and you probably know all this from experience. I'm going to have to try and stick to what he says. Somehow!!! God bless you and your family.

Popsic
Popsic in reply to basten

Thank you for your kind comments, I do formally belive God has got this, He is bigger than anything!

I do have the acid watchers books, I follow almost all he says already tbh, I don't drink caffeine, havnt for years, I stay away from acid foods as much as poss, one thing that works for me is a slice of lemon in hot water with 2 sweeteners every morning, now I hear you say ooooh noo, but lemon turns alkaline when it hits the stomach, believe it or not, it's funny because when I was younger I used to drink a lot, never was I ill, lol, stop drinking and look what happens lol.

I will let you know what doc / pharmacist says, hopefully be good news.

Stay safe, keep the faith and speak soo

June x

basten
basten in reply to Popsic

Ok sorry I went on a lot. Yes I've read about lemon in water so I've start my day with it now. !! I couldnt even drink tea at one stage. Now I can have a cup of decaf. Meat is acidic and fish. Do you eat them?

Yes do let me know xx Linda

Popsic
Popsic in reply to basten

No not at all, I appreciate your advice. It's good to share information, you can feel so alone in this situation, x

Notknowmuch
Notknowmuch in reply to Popsic

I have same experience with God’s Grace and Mercy. My husband's OC was diagnosed swiftly and in good time ie T2 N1 M0. He wasn’t aware that he had GERD and Barette’s Oesophagus until revealed by results from Barrium Swallow test, gastroscopy, CT scan and finally a PET scan.

Within 5 months from symptoms of difficulties with swallowing in Feb this year, diagnosis in March, finished chemoradiation treatments on 24/5/2020, IL operation on 2/6/2020, left hospital on Day12 after surgery, my husband is recovering well at home with no major issues, PTL!

We had family members and friends in UK, Malaysia and in Australia Supporting us in prayers. Also this site and the members’ post provided tremendous information in different ways for me as a carer and for my husband who is the patient. It is God sent for me to accidentally find this group that I could relate at a time when my husband's OC overwhelmed me.

Unfortunately, I couldn’t find much information from the Australian Cancer Council in Australia or maybe I wasn’t able to find the relevant sites relating to OC.

My prayers continue for all caring for their lived ones and those going through this journey. May God grant you speedy recovery and lead you to the right medics and advice on how to cope and soldier on positively in hope. God bless you all and may His Peace snd Comfort be with you 🙏🏼🙏🏼🙏🏼.

Popsic
Popsic in reply to Notknowmuch

Hi there, I was like your hubby, didn't know anything apart from heartburn, I too had many praying for me, wouldn't have gooton through it without the Lord and my faith, I pray things continue to improve for your hubby and of course yourself, it's certainly a roller-coaster of a lifetime! X

rayw55
rayw55 in reply to basten

Hi- DO NOT TAKE NO FOR AN ANSWER - endoscopies can be done - I had OC 10 years ago with an Ivor Lewis operation in 2009 I am now having the same issues again but when i called my doctor 3 weeks ago he put me straight on the cancer pathway- have already had a blood test and having endoscopy on Monday - call your doctor and tell him what you need and be forceful :) all the best Ray

basten
basten in reply to rayw55

Hi maybe theyve arranged as you've already had OC bless you. I'm speaking to GI 3rd August over phone. I'm just hoping they will agree to do one soon.

rayw55
rayw55 in reply to basten

I am sure when you speak to the GI guys they will get one done quickly - safe journey Ray

oesophagectomy is typically a MDT decision unique to individual patient according to then diagnosis. Always remember that the staging prior to surgery requires co formation post surgery histopathology. So if the nodes are affected chances are they won't show up in the scans but when on surgery they may see.

Oesophagectomy is a major surgery and a radical solution as you have gone through and will be offered if it outweighs the risks of not doing it on a particular patient. Its all about operability to give a normal lifespan, meaning jf the affected parts are operable to be removed 100%. Then there are post surgery complications to consider based on past lifestyle, underlying comorbidities; and this will be most important considerations in MDT discussion.

Second opinion is a good way to find peace of mind. As this is not you as the patient and its your brother, so quite a lot of reading in between lines, assumptions and et al.

Usually the case will be discussed in the MDT and a preferred protocol agreed and conveyed through the GI consultant or surgeon.

Also note that second opinion has its own issues of lead time from another NHS trust in normal times, given chines virus situation its may add more delays.

Poor outcomes in line with poor survival rates, you yourself have survived 5 year mark. There was a case here somebody got it returned within 7 years.

When you say returned, do you mean same place? I didn't think that was possible, I'm a bit confused

Mauser1905
Mauser1905 in reply to Popsic

Technically not same place return after oesophagectomy. This is more the case of strains found elsewhere. Quite unfortunate in those cases and heart breaking. Because to go through such a toll taking surgery is itself a demanding task and daily battle.

Oesophagectomy in itself not 100% guaranteed to make a patient cancer free, though its intention is to achieve a normal lifespan if the patient didn't have the cancer in first place. (When speaking of the cancer tissues found in the oesophagus and not spread to other organs. Remember the surgeons typically remove as many nodes they can access during the surgery to achieve a higher rate of success.

Popsic
Popsic in reply to Mauser1905

Ahh OK, that makes sense to what my surgeon said about having the same chance now as everyone else. They removed things from my sternum I believe, I'm assuming that would have been nodes.

I have to keep telling myself how lucky I am,

I have to say joining here has helped me a lot.

I had the op in 2012 aged 63 and have since lead a near normal life,I do all the things iv ever done including golf and cycling and I'm still working coming up 72, the only thing I can't do anymore is late night curry's although have have got away with a few

Keep positive and don't listen to the prophets of doom

Popsic
Popsic in reply to Mentalmicky6

Hi mentalmicky6

I lead an almost normal life to, like you no more late night snacks, although a couple have been had lol. I still get really bad reflux, I never know what to do, when I get down I always remind myself that medicine is advancing day by day,

Thank you for your message, keep smiling.

Mentalmicky6
Mentalmicky6 in reply to Popsic

On the rare occasions I'm a bit down I just think back to the month I spent in the Chelsea Royal Marsden tethered down with dozens of tubes and wires recovering from not only the IL op but sepsis as well afterwards , but thanks to the wonderful doctors surgeons and nurses I managed to walk out of there unaided after a month and back to work in 8 months

Popsic
Popsic in reply to Mentalmicky6

That's fabulous! It's scary times isn't it?

I'm just concerned now about long term meds and there side effects, but I'm going to se my pharmacist / GP see what they can do.

I'm so grateful to my surgeons and nurses, we just have to live life now,

I can't return to work unfortunately, I was head chef for Royal British Legion, I do miss it, I have other health issues so I just have to accept it now, I also had to give up Street Pastoring, but I know good things are ahead.

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