Oesophageal Patients Association
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Chemo radiation or oesophagectomy?

Hello there. My father in law has been diagnosed with early stage oesophageal cancer. He was due for radio-frequency ablation but unfortunately the doctors found a small nodule which is early stage cancer. They have said his cannot be treated by endoscopic mucosal resection and they have recommended chemoradiation as stand-alone treatment as it is so early. My father is law is 79 but is very fit and for peace of mind wants the surgery (oesophagectomy). The surgeon said he is happy to do the surgery but is strongly recommending chemoradiation instead as it is so early stage. I was wondering if anyone else has ever been offered this and undergone chemoradiation alone (without surgery) and been cured? I am very worried about him having this surgery but it is his decision. Thank you in advance. X

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Difficult one ... however Having the surgery ( believe me we are talking Major major surgery!) and Life changing ....your never the same again and the side affects and physical changes are overwhelming and tremendous to deal with for a person twenty years his junior and very very fit ...my husband was 63. Also the Chemo totally shrunk the Cancer pre op and if the Consultant is recommended then he knows what he’s talking about after all he IS the Expert with years of experience and the qualifications. Good luck

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Thank you Debbie. I agree this operation is MAJOR and I do worry for him. He seems to have made up his mind over having the surgery... Thanks for responding. Xxx

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I was in the same position as your father in law. On the day I was due to begin the radio ablation a small area of ulceration was found and they couldn't proceed. I went on to have the op', chemotherapy wasn't even mentioned. My GP told me later that because they'd caught the cancer early and because it was confined to my oesophagus there was no need for chemo once the oesophagus was removed. That was six years ago, I was 72 at the time so a bit younger than your father in law. The first three or four months after the op were 'challenging' when it came to food and sickness issues and it took some time to get used to the new 'normal' ie the odd bouts of dumping but I've had no other problems. I've no way of knowing how chemo would have affected me, or how well I'd have coped with it but I surprised myself by how well I coped after the op. Whatever your father in law decides, I hope he does at least, as well as me but if I were him, I'd accept whatever his surgeon recommends - just as I did. Wishing him, and you well.

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Thank you for your reply Magpuss. It’s encouraging to hear your story. My father in-law had gone in for RFA and that’s when they found his nodule. I’ve been freaking out as back in the day I used to be a physio and I remember the patients who’d had the oesophagectomy surgery and just how major it was... I appreciate your response. I sense a long recovery road ahead post-op. Xx

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How about availing second opinion? (I did not go for second opinion and minimally invasive procedure consultation as both would have delayed treatment further. I did expect laparoscopic radio ablation but MDT came with IL Oesophagectomy as curative surgery offering normal life expectancy. This will be subject to 5 year survival from OC)

MDT in your FIL's case must have reasons for preferring alternative to radical Oesophagectomy, mainly considering variables such as patients age, health history, quality of life post surgery, life expectancy after OC treatment amongst other things for best prognosis.

At 39 years of age, 3 months past Oesophagectomy I sometimes find it hard to reconcile with the drastic change in my life. Considering it as collateral damage for a better prognosis. Things are getting better and will continue to, no doubt about it.

Complications do happen in the Oesophagectomy and I am living proof of still able to type and not sitting in the photo frame.

Wish him all the good luck whichever treatment he goes through.

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Thank you for your reply and may I say all the very best to you and your recovery ! It’s my wish for you that you get stronger every day, week and month. In terms of my FIL, I have tried saying to him he has to consider his quality of life given his age. It’s a shame as he loves riding his motorbike with a group of friends but I’m not sure if he will ever get back to this if he has the operation (given his age) but then again he is otherwise generally quite fit so I do hold out hope.

It frustrates me that he hasn’t actually spoken to the oncologist about chemoradiation as he is so focused on surgery but I wish he would get the full facts beforehand... My husband is going to speak to his dad again today but I know his mind is made up. Thank you so much for listening and all the best to you! Xxxx

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You're father in law is very lucky to have a physiotherapist in the family, I actually had my sons spare walking frame brought into the hospital so that I could get moving again. Of course, I wasn't allowed to keep it 'in case of infections being brought in with it'🙄, but it served its purpose as I was then visited by two physio's who monitored my progress with a hospital frame. I saw them twice, they watched me walking twice and that was it. You'll be a great help to your father in law, I lost an awful lot of muscle through lack of exercise and activity and was physically very weak because of that when I returned home. The thing that I found hard to get used to was not 'getting back to normal', it's what we do after being ill, having an accident or operation isn't it. I didn't know about OPA at the time, once I did - I knew that my 'new' normal was much the same as others who'd had the op, I found that very reassuring. For me, this new normal isn't very different to the old one.

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I agree not enough is done for people like yourself in terms of rehab. Given how major the op is physically and emotionally, you’d think there would be more support that way... It must be so frustrating for you coming to terms with your new “normal” and I guess people say “im lucky I’m sill here” but it’s still natural to feel a whole rollercoaster of emotions post op including frustration... My FIL is adamant he will be back on his motorbike within 6 months post op and I’m just very concerned about his unrealistic attitude currently. But then maybe I’m the one who should be more positive for him. All the best. Xxx

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Hi,

I can understand why your father in law wants to do this.

I would say, follow the advice of your specialist.

The op is massive and life changing.

My brother in law had it 7 years ago. He didn’t have any other choices. His tumour was too big.

He still has appointments with his oncologist, who is concerned about his weight. He’s very thin.

He advised him to eat more. When he does, he has severe diarrhoea, or dumping syndrome.

The op was very successful and saved his life but afterwards can be difficult to live with. It completely changes your life forever.

Best wishes for your father in law.

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Hi there. Thanks for your helpful reply. I guess I am so focused on all the potential complications of this massive surgery (and probably for good reason) that it breaks my heart to think of him potentially ruining his twilight years - which up to now are great. He is out and about and fit as a fiddle so it just seems very extreme to sacrifice all that for “peace of mind”... That said i have to remind myself it’s his life but personally it just seems so drastic. Sadly no one can predict the future. Dumping is horrible isn’t it. I wish you BIL all the very best. And thank you for your kind post. Xxx

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Hi Poetogo, has your brother-in-law tried changing his bread? My hubby had terrible dumping syndrome and it was suggested changing from white to seeded bread. It really did make a difference to him, also switching to the smaller sliced bread instead of the standard helped regulate the size of meals. Wishing him all the best.

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Hi, Npride, no he hasn’t. Thank you so much for letting me know.

I’ll tell him. Definitely worth a try.

Best wishes to you and your husband

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Thank you, it did make a huge difference to him, unfortunately he lost his battle in 2016.

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I’m sorry to hear this. I appreciate your input even more, now.

Good of you to bother.

Very best wishes x

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You are welcome, I just try to use our experience to help others, even if it helps just one person go through less of what he did. Take care.

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Hi it sounds lik your FIL is very strong minded and positive. I was offered it a week before surgery as an alternative due to my complicated body. The professor said it wouldn’t be a curative and he wouldn’t operate if it was unsuccessful. I was only stage one 55 year female. I went and had the surgery full Ivor Lewis scar across shoulder blade under arm and also opened up and front. Also pre and post op chemo. It takes a long time to get back to physical strength the scar is painful ,also our new plumbing takes time to adjust to. The weight loss is another factor average 3stone loss. I wish him well and hope he gets back to riding his bike post op.

It is hard for you as family to go through to but try to be positive.

Good luck

Debbie

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Aw bless you Debbie. I do hope you are coping well at the moment. He is so strong willed and my worry is if I do manage to persuade him to follow the experts and it doesn’t work, he would somehow blame me and then that would be awful too. I know it’s his decision etc but I just fear the worst naturally I suppose. It’s a tough one. I’ll keep everyone posted and thank you to you and everyone. You’ve been very kind listening to me and my worries. Xxxx

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It’s only natural to worry. He has been given a life sentence only we do not know how long for. It is very hard to make the choice ,but yes you have to go with him and what he wants. I am my new normal enjoying life and getting away whenever we can. It is a road of ups and downs. I have a good family and friends who helped me get back to where I am today.

Good Luck

Debbie

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Thank you so much Debbie. You sound amazing! Thank you for listening to me and I sincerely wish you all the very best. I’m sure I’ll be asking more questions on here soon! You’ve all been so kind responding to me. Xx

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Wow, how challenging! I think your FIL is blessed to have such caring family members, focused on his well-being.

I declined the surgery after my diagnosis of Stage 2 adenocarcinoma, chose only chemo and radiation which took care of the tumor (was considered full response). Subsequently had endoscopic mucosal resections and one radio frequency ablation when there was found some cancer in a monitoring endoscopy (not known whether residual or recurrence). So far I am three years out and doing OK, but realize recurrence odds are significant. No regrets (so far).

My focus was maintaining quality of life, even at the risk of a shorter life. I am now 67.

But that is me, and when it comes to such choices, we have to respect the individual whose life it is.

Yes, there may be complications and challenges post surgery. But as long as he knows and accepts that (is not in denial), honoring his decision is what is needed, seems to me.

Blessings to all of you!

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Aw thank you for your advice. I’m so happy that it’s worked out for you! That’s great! I do wish he chose the same path as you but I also know he would worry significantly about it returning if he didn’t gonfor the op. I’m not sure if he’s considered the fact that it could still return having had the surgery but it’s like you say, we have to respect and support his decision don’t we... Thanks again. All the very best to you and hope your quality of life is fantastic! Xxx

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Chemoradiotherapy can cure oesophageal cancer successfully, but perhaps only squamous cell cancer to the best of my knowledge; it may well all depend on where the tumour is located. Provided that the treatment does not cut off any future options for surgery, then it would be possible to have the treatment and then monitor the situation with a view to having the surgery, if necessary, at a later date.

The surgeons invariably recommend what they think is best for the patient. I know it is hard to get your head round all this, but I would say do not go against their advice unless you have very good grounds for not doing so, backed up by a second opinion.

There is a trend towards treatments that do not involve the major surgery, and this has developed over the last decade or so. The surgeons do not like recommending a treatment and then being found to be wrong later because of some sort of recurrence.

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Hi there. Thank you so much for your advice. This is my line of thinking completely. I know it’s easy for me to say all this though to my FIL - which I have done - and so I always finish off my comments to him with “but of course it’s your decision and your life”... I just worry he’s making the wrong decision. He has a fitness test for surgery this Weds at the hospital. I just have to be more positive about it all I guess. Thanks again for your message. I do genuinely appreciate everyone’s kind support . Xxx

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On quality of life, one study found that it takes about a year after an oesophagectomy to regain reasonable quality of life, provided that the patient will survive two or more years afterwards. Eating and the digestion can never be the same afterwards, but many people cope with the consequences to an acceptable

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Thank you for this. It will be a long recovery and I’ve asked him if he is prepared for drastic changes in his life post-op and he says “yes” but I do still wonder... What can you do though other than give him the support. Thank you for your advice. Xxx

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Hi PhysioD, I would get your Father-in-Law to do some serious reading about the side effects of the surgery. If the consultant is recommending chemoradio, I would personally go with that. Having watched my poor husband go through hell, I can honestly say it really is a last resort. The chemo and radio side effects are bad enough, but are short lived. Once the surgery has happened there is no going back and every part of life changes. You can no longer eat the things you did, the dumping syndrome is terrible, and to be honest my hubby never recovered, he was a fairly fit 53 year old and passed away 3.5 years after diagnosis. I would ask the question whether the surgery is still on the table after the chemoradio. If the tumour doesn't go with this, then will they do the op? As I think many people have the chemo prior anyway. At the age of 76, I would seriously think about it, but knowing all the facts is the only way to go ahead. Good luck to him and whatever he decides to do.

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You are so bang on the nail here. I want him to speak to the consultants again before any final decision to clarify exactly the chances of a cure with their suggestion of chemoradiation and also I want them to go through comprehensively with him the reality of life post-op surgery. I really don’t think enough time has been spent with him fully explaining everything. As far as I’m aware, no one has discussed with him whether or not surgery would still be an option if the chemoradiation failed. This has been my issue all along! I’ve been banging on to him to clarify this as he keeps saying “I have one chance” and I say “listen to what they advise you and stop thinking it’s one chance and clarify the facts”... I am going to ring the nurse about this as I personally want to speak to the oncologist before he goes ahead with this surgery. Your post sums up my thoughts entirely. Thank you for this. Xxx

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You are very welcome. I hope you manage to obtain the answers you need, remember that they may not speak to you though unless he has given permission. Sometimes it was hard enough for me as a wife

Here are a couple of links that may be useful;

cancerresearchuk.org/about-...

cancerresearchuk.org/about-...

cancerresearchuk.org/about-...

Take care. Carrie

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Thanks Carrie. Those links are great. I’ve had a read of these websites before but actually having these quick links to the issues post-op is very helpful. All the best, Dawn xx

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You are very welcome. Good luck

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And can I just say my heart goes out to you at losing your husband far too early. It’s a terrible disease and truly shocking. No one should have to endure it... thank you for sharing. Your words have really struck a chord with me. Xxx

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Thanks for your kind words. I just try to use our experience to help others. xx

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Hi PhysioD, my Mum had chemo/radio in 2005, it cleared the cancer for 12 years! Unfortunately they found a stage 1 tumour last year and she had the IL op in November 2017 (aged 63). Post op has been challenging for her, and left her quite weak, it is life changing. Meals are smaller and more frequent and she has lost over 2 stone since the op, which she couldn’t afford to lose! My Mum has had lots of other side effects, chest infections, reflux and an aggravating cough, due to the reflux. On the plus side she didn’t need any chemo after the op as it was caught early. Every week she is getting stronger in her recovery, thankfully! She has had to adapt to her new norm. It hasn’t been easy, but she is slowly getting there, I guess 6 months post op is still early in the recovery road, as most say it takes a year or more to adapt and recover.

It’s a tricky one as the chemo/radio did it’s job for my Mum for 12 years! Her surgeon had never dealt with a case like my Mums where they operated 12 years after treatment. I would listen to all the advice from the consultants, as long as he knows how major the op is, all you can do is help him through his decision and on his road to recovery. The fitter he is pre op the better post op! This forum has been a god send, everyone is so helpful and gives good advice.

I wish your FIL well, which ever treatment line he chooses.

Debs x

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Wow what a great post and your mum sounds like a real trouper. Good for her. I can only imagine how tough it’s been for you all... Your story gives me hope and I’m definately going to sit down with my FIL and just share everyone’s stories - including your mum’s! I really wish he would be more open to chemoradiation and I feel it needs to be discussed more with the doctors before ploughing on with surgery. I am so glad I found all you kind, helpful people on this forum. You are all a source of comfort at this difficult time. Lots of love and best wishes to you and your mum. Xxx

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Your Father-in-law's course of action seems rather drastic for such an early , small lesion.

Is he really properly informed as to what an oesophagectomy entails, both for himself as well as his nearest and dearest?

If the surgeon recommends chem/rad it is because he believes it will work. Provided his medical team assures him that in the event of failure he would still be eligible for surgery then that would be the course of action I would recommend. What luxury to have a choice!

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Thanks for your comments. This is what I’ve said to him! I said to him you are “lucky” for it to be caught so early and to have an alternative to surgery. I just feel like it’s all been a bit of a whirlwind and that before rushing in with surgery he needs to sit down again with the doctors and be told everything again and to clarify options if chemorad doesn’t work. He is 79 and has a nice life and currently no symptoms AT ALL which makes me sad to think all that will be replaced with a new normal post-op. And not one for the better (in my opinion of course)... I’ll speak to him gently again. All the best to you. Xxx

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My partner 54 is a quadriplegic of 30 years and was diagnosed last week . He was of the mind of lets cut it out and "get er done" I like you had researched in detail and didn't think it could be an option being such a drastic life changing surgery After surgery consult Mike came away knowing that was off the table Disappointed but sure in his mind that it would not be a viable option . We have PET scan this week and then chemo and radiation . Hopefully he can stand it as being quadriplegic puts you at a disadvantage to begin with . I find smart patients.com invaluable for information .I wish your FIL all the best . We are also working holistically with a NP that helped her Mom through chemo and has some great ideas . will be starting Mistletoe injections which are a main stream practice in Europe but of course not here in Canada .xoxo

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Hi Vanisle. Thanks for your message. It’s a stressful time isn’t it and I hope your partner is doing ok... My FIL was very lucky to have the option of cbemoradiation stand-alone as it was so early and maybe they were considering his age of 79 too... He has since spoken to the oncologist and had a good chat about his options but (sadly in my opinion) he has still opted for surgery which is now scheduled for 9th July. It’s his decision and his life and it’s just a matter of supporting him through it now. I do feel it’s a shame as research as shown similar outcomes in his scenario. I believe he feels it’s better to completely remove surgically for his peace of mind. I do wish your partner well. I guess being quadriplegic it will be extra important to monitor his Respiratory health and practice regular breathing exercises to keep the chest clear as his mobility is obviously reduced. Lots of love. Dawn xxxxxx

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Hi physioD I have now had 4 of 5 chemos and 20 of 28 radiotherapy sessions. The side effects have been a slightly sore throat and nausea from the chemo manageable with strong tablets. Hoping the decision I took will be successful. Best wishes for his decision ian47

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Dear Ian

I had 3 rounds of chemo then 5 rounds of chemoradiotherapy with 30 radiations. I could not even eat after 15 sessions, had terrible nausea, neuropathy from chemo, rashes, the whole lot. Took 7 weeks till I could eat again. You are very lucky indeed to be doing so well. That’s so helpful for you.

I also had the surgery which was lucky as I had a skip lesion which was found during surgery. All went well and I recovered well at 6 months except for extreme tiredness but sadly mine has metastised into my hip am which is very rare Indeed which was found 1 month after the all clear. So far treatment ( surgery and radiation did not work so back having chemo and big op ahead)

Keep a close eye on any symptoms and Be checked regularly.

Take care

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Hi Blossomstix

I’m so sorry to hear about your situation. I do wish you well and I hope you are managing to cope ok. Sending you hugs. Xxxx

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Hi Ian! It sounds like you are getting close to the chemoradiation finish line. Fantastic. I bet it’s been tough going. Big respect and I’m thinking of you. Have you managed to feel up to getting out and about much in between your treatments? Praying the treatments pay off for you. You sound positive. All the very best. Xxxx

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My mum had oesophogectamy (Ivor Lewis) in January this year at 81 (!) for what they thought was small tumour like your father in law's, unfortunately it was also in 3 lymph nodes and has now spread to her liver: she is terminal. Personally I don't think it should have been offered at her age. The operation was harrowing for her and us (I did not want her to have it but she did and her choice and I'm not saying chemo/radiation is an easy option). It makes me sad that she went through all that and it has still spread: I already knew it was an aggressive cancer (40% 5 year survival even with op, I've read) but not sure how well informed she was about after effects/consequences. She lost about a foot of oesophagus, replaced with stomach which was therefore subsequently much reduced in size. She spent nearly a week in ICU, before ward, had uncomfortable plastic tube down throat for much of it and pneumonia. Prior to this she was fit, healthy never caught anything but had trouble eating and swallowing before diagnosis.

The operation is life changing and extremely challenging in terms of quality of life afterwards. After op she lost a lot of weight, cannot ever sleep lying down again but has to sit up with pillows in bed, can only eat 6-8 v small amounts a day (I can't call them meals) and cannot drink with them but has to wait 15 minutes before or after). She gets acid reflux when she eats anything and is in fact eating very little if at all some days now, nor sleeping very well. Sorry to sound so negative and I can understand if younger people opt for it: this is just our personal experience.

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Oh Kerena. Thank you so much for your message and how terrible for your mother and family. I sincerely wish she can become more comfortable over time... what a terrible time you’ve all had.

It is so life changing isn’t it and I have tried my absolute best to make sure my FIL is sure about this surgery as I agree it is so major, with a high incidence of complications, that I do doubt this as an option in later life but then I guess I’m not the one in the poor situation...

He is scheduled for surgery on the 9th July and as it looms closer we are just trying to get our heads around it. I don’t feel like I’ve accepted it’s happening as he is otherwise so active and well. Normal swallow etc etc. I do wish for your mum to be more settled and I can only wish you well Kerena and thank you for taking the time to write. It’s been a source of comfort knowing there are so many kind people on here to offer advice and stories of their own experiences. Xxxx

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There's not much more you can do physioD if your FIL's made his mind up, mum was the same and who knows, she may have felt she hadn't tried everything. I think those after effects are fairly typical & didn't feel she was that informed before. Wish your family & FIL really good luck with it all; hope it's successful & sounds like he's got fantastic support in you

Kind regards x

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Thanks Kerena. I also think even knowing all the potential complications and post-op issues, it is hard to realise that knowledge when you are feeling fit and healthy. Sadly once you and post-op there is no going back is there but I guess now I just have to support him all the way. He is so adamant now. All the very best to you. Xxxxxxxx

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Absolutely agree. I think a lot of it too is the desire to be immediately cancer free: mum kept saying but i don't have it now ( pretty obvious this wasn't the case 2 months post op). She never got to see the oncologist but has now been transferred to him. No easy answer is there ? but you couldn't have done more, tried harder. Really good luck with it all xxx

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Absolutely right again. He has said about after the op it will be completely gone... hmm... I just think at what expense and also no guarantee still! It’s been helpful chatting to someone who completely understands the situation. I’ll be in touch again. Cheers Kerena. All the best to you too. Xxx

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Physio,

Have you tried attending Maggie's patient meeting which are usually monthly in nearby centres? Possibly along with your FIL. There will be this month's GI meeting due which you all can attend and see some of the patients experience first hand.

I am half of your FIL's age and 5 months post IL Op. Still recovering and not perfect yet. Mind says can do everything and body reacts otherwise.

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Hi Mauser

That sounds like a great idea. I’m not sure if my FIL would be up for it but I will suggest that for sure. I wonder now where the nearest one to me is. We are Leeds/Bradford area and surgery planned for St James’s Hospital in Leeds on 9/7. If you could point me in the right direction that would be great. I’ll get on Google now. Xxx

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Check OPA page below

opa.org.uk/pages/patient-me...

Maggie's Yorkshire is planned and yet to be built.

maggiescentres.org/our-cent...

Also why not try and seek patients closely who are willing to meet and talk in person? Any information is good for understanding. Towards better preparedness.

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Found it! Thanks xx

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