Hi, I am new to this site but I am after some advice on behalf of my husband. He was diagnosed with Oesophogus cancer last week and I'm desperate to get the best treatment for him. He is 44yrs, fit, healthy and we have 2 young children so this is a fight we refuse to lose.
We are still waiting for a PET scan and a laparoscopy but the CT shows it's localised to oesophogus and some lymph nodes are enlarged.
They are talking about Chemo and then surgery at Watford general.
How do I find out where the best place to go is? We haven't met any if the team looking after him yet but it's difficult trusting people with his life essentially.
We live in Hertfordshire, England and are currently under Lister hospital Stevenage and Watford but would pay to go private if it meant better treatment/surgeons.
Any help or advice would be appreciated right now,
Thank you.
Vikki
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Sparky194
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I was in the same situation as your Husband 12 years ago and had private insurance. After a lot of research I had my operation on the NHS. This is a specialist operation that require centers of excellence to perform such a procedures and the NHS is the best.
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It's tough going and your Husband will be ok and if you need any further help don't hesitate contact me
Thank you for letting me know about your experience. It's good to know you are doing well 12yrs on. I will give them a ring just to talk things through. Thanks for the advice re NHS.
I'm so sorry to hear about your husband. I am a year on from my operation. I agree with the earlier post. I had my op at at Thomas's in London through the NHS and they were brilliant. I had chemo for 9 weeks then the op and then a planned further 9 weeks of chemo though I could only manage one infusion after as I was quite weak. Through looking at posts on here and other websites it does seem that everyone who has had the op through the NHS in numerous different hospitals have received excellent care. If you have any further questions please just ask. It's a long year of treatment but remain positive and you can get through this.
Hi Im sorry to hear your news. When I was diagnosed I decided that I wanted to see a surgeon with a special interest in the Ivor Lewis operation. The more experienced the surgeon in this procedure the better the outcome. I found Asif Chaudry at the royal Marsden. Asif often performs the surgery using a robot if you are eligible for it. Which means there is much less of an incision and faster healing. Healing is quicker and you can start the second chemotherapy sessions sooner.
The Royal Marsden is incredible, they only treat cancer and they have top people in every field. I can’t recommend it highly enough I have insurance and so I just called him to make the first appointment.
Yo Vikki. I would say that everyone on this site would testify as to having the best treatment. Such is the norm of our NHS. I’m 9 years on after IL. At the time of my diagnosis I lived in Uxbridge and had to commute into Paddington, St Marys, but had my chemotherapy at Mount Vernon. The surgeon was one of the best in the world albeit with his team around him. After a couple of weeks after my op I was obviously weak but I was pain free. Although remembering my chemotherapy, that was testing as it was a strong regime of treatment. Going on your description of events, that’s like for like as I had. I was 57 when I had my op.
18 months ago I was treated at St. Mary's Paddington, they put me on an exercise regime and I was out of hospital in eight days. The surgeon was Krishna Morphy, he was brilliant, I was lucky enough to have robotics and very little scarring.
Yo Red. Lucky for you. If I was diagnosed today I don’t think I would have had robotics or keyhole surgery. The reason being the location of my tumour meant a lot of restructuring after the removal of tumour.
Sorry to hear that, I know I was very lucky at Stage III and told I was cancer free but we all know.....things can change. But I do have problem in that my right lung has never really recovered and I am susceptible to lung infections probably once or twice a year. It doesn't really affect my fitness too much but I am breathless walking up hills or stairs.
I live in Hayes Middlesex strangely enough and I know Uxbridge well.
I feel they did their best for me and I feel strangely satisfied even with the lung problem, I wish you did too.
Yo Red. There you go!! Not to be misunderstood, I had my op and all that went with it. Once out of hospital I never went back, I had no complications and went on to lead an abnormal life, 4 pints a day and every other day a big roast dinner. I worked hard and played hard, my only downer , too the present day is that I’m on WarfarinAnticoagulant. The reason being that they put a filter into my deep vein in the groin due to the procedure lasting 12 hours. On completion they couldn’t remove the filter, hence the WarfarinAnticoagulant. This involves getting a blood test every 4 weeks... for 9 years now. It really wears me down. On the bright side, you must of met my surgeon, the renowned professor Hanna many times on your visits. They all went above and beyond , I’m more than satisfied..
Four and a half years post-Ivor Lewis, with chemo beforehand and none after. I was treated by the esteemed Simon Dwerryhouse at Gloucester Royal. I cannot fault any aspect of the process. What I admired most - and have stated on this site before - is that everyone, from cleaner to clinician, seemed to sing from the same sheet: each was directed to the common purpose of making me well. I did a great deal of research after diagnosis and before meeting my consultant and there are many centres of excellence for this life-changing procedure. I was fortunate in that Gloucester was both the closest and that from the moment I met Simon, I knew I was in safe and supremely capable hands. I wish you every good thing.
Not at all. I was disconcerted at first - it seemed to be fairly general and I felt perhaps a belt-and-braces approach was desirable; but Simon convinced me that the rigours of post-IL surgery, particularly as in his estimation the procedure had been 'textbook', would have been counterproductive. I was happy to follow his advice and have no regrets.
I had my op at Broomfield Hospital, Chelmsford under Mr Bruno Lorenzi, he has an amazing team, totally successful op, mostly keyhole but due to slight problems an incision had to be made to finish off the op. One year later, two full body scans and two 'all clears' so I am a happy man, did well considering I could not have chemo due to my blood problem, a blessing in disguise. (Age 71)
Thanks for all the replies, seems NHS is the way to go. It's fantastic you all speak so highly of the care you received and are doing so well, this is very positive.
I feel frustrated right now because it's a week since he was diagnosed and nothing has happened - no appointments, scans etc I feel like every day nothing happens is a day we are losing. I think there was a meeting yesterday to discuss his case so If we don't get some answers today I'm going to make a fuss.
I had IL in June and was recovering well but was then told it had spread to my liver. We went through many weeks of waiting for some form of treatment plan until after 8 weeks of waiting I was moved to a local centre for my op. If you feel like things are happening too slowly please bring it to the attention of your consultant and never give up. We had eight months of fighting for appointments Tec prior to the cancer being found accidentally as I was thought to be suffering from achalasia . A further eight weeks after diagnosis was imo too long but they kept saying my case was complex. I hope with all my heart your husband receives the best care in a very short timeframe to allow you to come through this, there will be uncertain times ahead but the human mind and body can recover from these setbacks.
I had a level of private medicine but I was handed straight to the NHS and I believe this might be a usual procedure. Obviously the private medicine will give you a room, etc., but I noticed it also when I had a knee replacement in a private hospital that I had been treated by NHS.
In reply to Charlie Wood, for what it is worth, I did not have chemotherapy as no drugs were effective at that time, or radium. Now 25 yrs later still fit and active. Best wishes for your future journey. sally
Hi we live in Nottingham and my husband had his Ivor Lewis performed by Mr Simon Parsons on the NHS at the City Hospital and cannot hold him in high enough regard an amazing surgeon.. He will be 5 years post op this May. No post op chemo as so poorly with pre op chemo. Last November had to have a haitus hernia operation. Again performed by Mr Parsons and again very successful. I think our Surgeons are wonderful x
Hi Sparky194 I am so sorry to hear about your husbands diagnosis. You've had some great advice here from those of us that understand perfectly what you must be going through as a family at this time - Everything snowballs very quickly and it can be so daunting. I was 43 when I had my diagnosis at the end of 2016, followed by my oesophagectomy in 2017- I also had my chest lymph nodes removed and received chemo also. My whole surgery was done at Addenbrookes via keyhole. They have been amazing including with all my regular follow-up and any issues that I have. I'm coming up to two years since my op (cancer free) and my healing has been great due to my health being good prior and age - your family definitely help you get through those darker times. There is light at the end of this tunnel try to look a day at a time its can seem so daunting when there is so much information coming your way. All the best for your future - Jo
Hi, I am 5 months post IL op. NHS were AMAZING. I had my 2 months chemo at Royal Berks in Reading. The chemo shrunk my 6 mm Tumour so much you could bearly see it on the follow up PET scan. I was painted a very black picture of the chemo but you know what.... it was bearable. Just felt a bit nauseous. Then a month break before the op to get my strength back. My operation was performed at Churchill Hospital in Oxford which specialises in upper gastro. Every step of my journey was incredible. As someone else said. From the cleaners to the surgeon were superb and I wouldn’t have changed a thing. I am now (as far as they know) cancer free and recovering well. I am 5 months post op and swimming 32 lengths every morning and walking 10 miles at the weekend. There are changes to diet but all doable. I’ve lost 3.5 stone in weight (which probably saved my life too). Obviously I can still feel the operation scars inside but again ... bearable. You can hardly see the scar on my back and the ‘keyhole’ scars are all but gone. Check out the Churchill. Incredible place. Incredible people. Let me know if I can help with anything but I am living talking proof. ... you can get through this awful disease successfully. Good luck xx
I had my op about 15 months ago on NHS at James Cook Hospital in Middlesbrough. Once I was diagnosed it did take a couple of weeks to get everything started so don't let that worry you too much a the actual tumour takes years to grow I wad told so a couple of weeks isn't a problem. I had 3 lots of chemo before my op then 3 weeks break and then op,it was a couple of months then started 3 more chemo. I never really suffered any bad side effects during chemo...I never even lost my hair, it did go gray and thinned out but i kept it, the only things I suffered were feeling sick and feeling tired.
Good luck with it all. Keep your chin up and everything will be ok
Hi,
This is the first time I have replied to any posts but feel that I can help you, I was diagnosed Oesophagus cancer in May 2018 and went through PET scans at Mount Vernon and laparoscopy at St Albans then four lots of chemo at Lister before having the Ivor Lewis op at Watford General on the 29th Oct,. I have to say that my experience with all the staff and hospitals have been the best right from the start I was told everything and the surgeon who did my op was very good and positive all the way through, I am not saying it will be easy but I had a team of nurses at Watford who helped me a great deal even after discharge from hospital, still having problems now with eating and some pain but all in all getting better slowly. I hope this may be of some help and that everything goes ok
Thank you for replying Rod, that does help and makes me feel more confident that they will do the best for him. Who was your surgeon at Watford? Was it Dr Al-Barahni? (Not sure about spelling)
We have been told that they won't do key hole surgery to remove it they will 'open him up' I'm wondering if it depends on the surgeon and what their skill/preference is. What did you have at Watford?
Hi, yes it was dr Al-Barahni and I’m not sure if spelling but he is a very nice man and explained everything to me so I had all the facts so making the decision to go ahead was easier, I had some key hole and a cut on my right side to have a rib removed for access, I assume as some of my cancer was in the top of my stomach as well he did a different procedure. I spent 4 days on the intensive care unit then down to the ward, it is a major op but everyone is there to help and support you all the way
I had my Oesophagectomy at Watford General in June 2007. There were two surgeons - Jeremy Livingstone and Geoffrey Sagor (who has now retired). I know Ahmed Al-Bahrani from my time as a patient representative on the Mount Vernon Cancer Network. He is a good man with an excellent surgical record, who must have performed over 100 such operations by now, and who led the work on the enhanced recovery programme at West Herts Hospital Trust.
Hi
I personally would ask for a skilled consultant that operated by Key hole much less evasive. The success rate seems to be determined by at least two factors: the stage of the cancer and the ability of the Surgeon. Skill seems to be gained by having done many of these Opps before. CAT and PET scan may eliminate the need for a laparoscopy shows more than the human eye. I am 3 yrs post Ivor Lewis and Chemo at Northern General Sheffield. I think the NHS are wonderful. My friend in America had to search for all her consultants see what tests and procedures her insurance covered all adding to the stress..
Wishing you all best wishes for your journey ahead
Hi there I live in margate kent. And I went to st Thomas’s in London. Under professor Mason and his team. They were great. Had it Done 5 years ago. Good luck with your search. Lab
Hi , I too am sorry to hear of your husbands diagnosis. I found the worse time was before the treatment properly started, while waiting for the staging tests. Once it had, I tried to take one day at a time, and marked getting to the end of each stage of the treatment as an achievement. This was 5 and a half years ago.
I chose to have my surgery at Addenbrooks hospital, under the skilful consultant Mr Safranek ( also hear Mr Hardwick is excellent too).
I can’t praise the oncology care by Dr David Gillian, chemotherapy suite, and radiotherapy staff , enough. It was really excellent.
The NHS excels for life saving treatment, such as this.
I wish you every good wish for a successful outcome.
Hello! I was diagnosed with early OC too. At Lister..before you make any hasty decision please do consider Watford General. The team is excellent and I have been through this journey recently and am recoveri g well. I have had a oesophagectomy. We had also thought about private treatment but my GP strongly advised not to pursue that. The surgery is .major and it does need a whole skilled team with adequate back up to deal with it. Watford surgical team is really good and together they have the expertise. Would be happy to meet you or speak to you if that would help. We live near Hitchin. Please let me know by texting 07961 377526. All good wishes
I can't thank you all enough for your responses to my question, I feel much more confident in the NHS now, and I'm so pleased you are all doing so well.
The docs had a meeting yesterday and are now talking about giving him 'cross study' chemo and radiotherapy. We have a Pet scan on Monday and 1st oncology appointment next Friday, I guess we will have a better idea then. They have put him at T3 N1 M0.
Thanks for the offer of a chat Shimla18 I may well contact you, we also live near Hitchin. I'm pleased to hear you are happy with lister and Watford.
Mr Albaharani and his team are one of the best as far as I am concerned. I too went through an anxious long waiting period before surgery..but the team knew what they were doing..take care..thinking of you..you are in our prayers..x
Just to let you know that I was diagnosed with oesophagus cancer 4 and a half years ago mine too was localised in my oesophagus I elected to have a esophagectomy using the Ivor lewis procedure, I too was healthy 58 year old who used the gym regularly, it was tough for the first 6 months post operative but things slowly improve over time and I am getting to see my grandchildren grow up. Things will change but you both have a future to look forward to it appears your husbands cancer like mine was detetected early so the outlook can be good, hope this helps in some way my thoughts and prayers are with you.
I had my Ivor Lewis esopheagectomy in 2011, after 3 cycles of chemo. I was very lucky to have had a successful operation performed by James Catton at Nottingham City Hospital, they are the front runners in my opinion of this type of surgery and I did lots of homework on this before the op.
I was with BUPA for 20 years but not when I had my IL operation in 2014. The NHS in Birmingham were excellent, the only benefit going private is the initial scans etc are quicker and the car parks are free
I am three years post op Ivor Lewis and I live about five miles from you.
I was referred to a Professor George Hanna at St Marys Hospital Paddington and he is really the absolute best. He is the most caring Doctor I have ever come across. When I was in ICU the day after the op the phone rang at six in the morning and it was the Professor calling to check that I was OK. He did that every day until I was 'out of the woods'. A truly brilliant man to whom I owe my life. And from where you are you could ask for a referral to Prof Hanna.
The best of luck with everything, any questions let me know.
Hi. I am 6 years post chemo/surgery/chemo. My brilliant surgeon was Henry Sue-Ling. What a fantastic caring man. I understand that he developed the surgical procedure. He is at NHS St. James Teaching Hospital in Leeds. Saved my life!!
Hi, I'm so pleased your treatment has been successful. It sounds as though there are many great surgeons and hospitals that specialise in this procedure which is brilliant.
We have meetings with the surgeon and oncologists on Weds so will know a lot more about their plans for him. I guess at that point if we are unhappy with anything we can be referred.
The specialist nurse told us he wouldn't have the ivor Lewis op, they would 'open him up' I'm not sure why this is, but obviously a question to ask on Weds.
I'm sorry to hear your news and hope the cancer was picked up in its early stages.
I've read the replies and there are a lot of very good centres/surgeons around the country so here's the easy bit first:
The NHS provides the same doctors/surgeons as work in private hospitals so you are likely to get the same treatment irrespective of whether you go NHS or private but your hospital conditions might be different if you go privately - smaller smarter rooms, poss more nurses etc etc
The harder bit is that the NHS is consolidating its cancer services and although I think Lister and Watford still do an admirable job with excellent surgeons, there are now hospitals which are further away but deal with a larger volume of OC cases. Best to speak to your GP who will be aware of what is occurring locally. 2 centres you might consider are UCLH and Imperial/St Mary's. Royal Marsden and St Thomas' which have been mentioned below are also excellent but further afield. Don't forget your travel times.
Chat with your GP who will have the appropriate contacts and will know your case better than anyone - some surgeons eg might specialise in a particular type of case eg it might be possible to undertake the op laparoscopically
Hope this helps and I wish the best to you and your husband. I had my op 15yrs ago and am now going strong !
Thank you for the advice, I am looking into other hospitals. This is a life changing decision and it needs to be the right one, no matter the cost re time/money/distance.
Yo Vikki. So one week on, you must know lots more now. I was diagnosed at Hillingdon,Uxbridge but had no say in the matter. They just said you’ll be referred to St Marys,Paddington. I think most of the private surgeons put an awful lot of time in the NHS. I wasn’t sure of etiquette but many other posts mention their surgeons , mine being Professor Hanna, a world leader in upper GI. It must be terrific to be able to go local, as, at the time I worried about my wife travelling home safely after visiting, winter time , early dark nights, etc... In the brief time on this site, it seems to me that the quality of surgeons nationwide, mentioned in posts are overwhelmingly so professional. Everybody being in good hands.
Hi I live in bedfordshire I also was diagnosed with oesophageal cancer in 2017 ,and was sent to Watford general for the ivor lewis operation , the team there was marvelous , when you get to meet them all which you will do soon , you realise how commted they are in every way ,good luck ,let me know how you get on .
im 16months down the line and getting stronger all the time ,you will have to change your eating habits ,takes a little while to get use to, but it will be worth it , please keep a positive attitude ,and you will be ok , speak soon when you know more.
Thank you for your replies and the information has been very helpful. It's good to know those of you who have had their ops at Watford are happy with their care.
We met Mr Albarani today and he was really nice and seems very experienced, it's hard putting your loved ones life in these strangers hands though.
So the plan for Paul is to have radiotherapy every day for 4 weeks, he will also have chemo once every week too, this will be at mount vernon.
He will have a 6-8 break and then have the Ivor Lewis op at Watford.
While the hospital was just 5 min walk from my home, at closer time we were thinking of laparoscopic IL Oesophagectomy buy somewhere like Edinburgh or Glasgow.
It was fortunate that we didn't go anywhere else and stuck yo Aberdeen Royal Infirmary as after the oesophagectomy I went into ARDS and required ECMO treatment which was only locally available in ARI. Was in hospital for 1.5 months and being close to home was really helpful for family.
This is very true, we are about an hour away from our hospital, we do have fantastic support from friends and family who will have children when needed, but if there was somewhere better equipped/skilled to deal with him I would send him to Timbuktu if I had to! X
World-wide statistical analysis has shown that, unequivocally, the success rate for this procedure depends upon the frequency with which the surgeon and his team in that unit perform the Ivor Lewis operation. Literally how much practice they all have!
Such a volume ( the minimum is 52 per year) rules out all but a few centres.
For hyper-critical medicine, which this is, the NHS, because of it's resources, is by and large the best.
I had my op as a private patient in a London Teaching Hospital. Whilst I have no quibbles I suspect that it was a waste of money as the care might have been even better on an open ward - more attention and company offset by worse food (you can't eat anyway) and less sleep. But that was then - 27 years ago.
I can’t answer your question but wanted to let you know your not alone, my husband is 47 and we also have 2 kids aged 14 and 11, he has had 4x FLOT chemo and is fast approaching his Ivor Lewis surgery date which is being done at St Thomas’s hospital London he has so far been very well looked after by our NHS, wishing your husband and family well here if I can help in any way
Thank you Sacha, I appreciate you getting in touch. I know there are so many people going through the same as us unfortunately, I hope your husband is doing ok. I'm finding it so difficult to give control of my husbands life to people I don't know, and he doesn't want to know anything so I feel under pressure to understand everything I can.
This site has been so helpful in giving me peace of mind, and like you say knowing I'm not alone.
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