Hi all
Can anyone recommend hospitals for Osophageal cancer treatment particularly the surgery.
I live in Derby but am concerned the Derby Royal only operate on 17% of people diagnosed with this cancer. This is way below the national average.
Has anyone been to the Salford or Christies?
Also how does it work. Can I ask for a referral from my consultant if I am unhappy with there decision. Can I have me chemo treatment at the Derby Royal then the surgery at another hospital?
Thanks
Jules
Hi Jules
I had my surgery Ivor Lewis and chemo 3 years ago at the Royal Stoke Hospital my surgeon was Mr Cheruvu he gave me a chance when nobody else would as they said the tumour was too big....He saved my life after chemo shrunk the cancer enough for him to operate
The hospital is only 45 -60 mins from Derby I know because my daughter lives in Ripley and I travel often to visit her I know it's a distance but it really is a good hospital I'm willing to meet with you to have a chat etc
Margie
Hi Jules, I had the Ivor Lewis operation at the Derby Royal hospital in March 2012. The operation was done by Mr Leader and his team. I firmly believe that I couldn't have received any better service or after care had I picked any other hospital or in fact gone private. I am virtually back to living a normal life now. I wouldn't hesitate to recommend the Derby Royal to anyone. I think the only thing you will have to take on board is that post op it's a real hard slog to get back to anything like normal, at times you really do have to push yourself. I hope everything goes really well for you.
Sorry the op was in March 2013 no 2012
Hello Jules, I like margie had my op at the Royal Stoke Hospital, coincidently Mr Cheruvu was also my surgeon and I too had my op three years ago. My cancer was picked up early tho' so I didn't need chemo. I was referred from my local hospital as the Royal Stoke was the nearest specialist hospital for the Ivor Lewis op'.
Hi Jules it does depend on the stage of the cancer I was diagnosed with T3 N2 and they decided not to operate and did Brachiotherapy and this successfully unblocked the oesphagus so I could eat I am now finishing 18 weeks of ECX chemo which seems to have had some effect.
Nottingham do the operation but they decided not to in my case.
Best of luck Bob
You don't say what stage you are at but I assume that surgery is necessary? I was diagnosed in 2013 with early stage cancer but was told surgery was necessary. I was aware that there were new endoscopic treatments available so asked to be referred to University College Hospital London which is the leading hospital in this type of treatment.
After removal of the carcinoma by resection via endoscope I have had a series of ablation so to remove all traces of dysplasia and Baretts. My oesophagus is now back to normal.
The standard of care and treatment at UCHL is of the highest standard, so perhaps you should look for a referral to there? Dr Heidry has been exceptional in his treatment and keeping me informed and involved.
Hi Jules,
My husband had the surgery in May of last year at Nottingham City Hospital - performed by Mr Parsons. He was in 7 days and recovered well. The Consultants at the City Hospital in this field of which there are three including Mr Parsons use two different methods of surgery - two of them carry out surgery whereby you are left with a feeding tube for about a month whereas Mr Parsons doesn't and after about 5 days you start to drink and eat soft food in very small quantities. As has been said earlier it does take some getting over but as long as you expect this and follow the help and support that is given you then that is good. I don't know about the other questions you ask - I think we are all able to ask for referrals but as far as having chemo at one hospital and surgery at another I am not sure.
I think you will find that Surgeons in this field are all good - however. I am a great believer in asking as many questions as possible.
Take care.
Sue
There is an OPA group based in Derby, so you may want to speak to them about their experience of being alive and well some years afterwards.
The percentage of cases operated on is not relevant, in my opinion. This is because about two-thirds of people with this cancer have a tumour that has grown large enough to affect their swallowing significantly and there is a fair chance that the cancer has spread. In that case, the surgery in itself, however expert, will not ultimately cure the cancer. The other thing that happens is that scanning has become much better at detecting whether the cancer has begun to spread elsewhere. This percentage has fallen over the years, but for good medical justification. Putting patients through major surgery when it will not ultimately cure the cancer is not always a good idea.
There are cases where a surgeon may judge a particular case to be too difficult when a second opinion may well be worth seeking, but the more relevant issue is how many such operations are conducted each year by that hospital and by that surgeon. The busier centres tend to do one a fortnight. The results from specialist centres are far better than a generation ago, and trainee surgeons have typically done more cases than the consultants had done a generation ago.
You do need confidence in your medical team, and these days they are a team, with oncologists, specialist nurses and surgeons collaborating together. When the operation has been successful, your surgeon becomes a hero in your own eyes because they have saved your life, and their skills are priceless, but there are also others in the team that do an excellent job.
When you are diagnosed, there is a lot to come to terms with. You feel you want to beat the disease by whatever means are available to you, and that is only right. But there are also many other factors in the road you have to travel down, including coming to terms with everything that may, or may not, happen.
My partner had his Ivor Lewis surgery in July this year at the Northern General in Sheffield. Our surgeon & Macmillan nurse are worth their weight in gold. Couldn't fault the treatment or care in anyway. Currently 4 months post op & doing really well.
Hope everything how well for you too.
I am on Long Island New York USA. There are many hospitals who do
these proceedures as well alot of Outpatient facilities. Locally there is
the Long Island Jewish Hospital Network. In Bay Shore is the Southside
Hospital and in Huntington is the Huntington Hospital. it's all you need.
There is also the Catholic Charities Hospital Network. I went to the
Good Samaritan Hospital in Babylon, LI NY USA. And there is the Stony
Brook University Medical Center i also attended for different proceedures.
You can come here from a foreign country too. This is Long Island, NY.
NYC is something else all together.
David
deveretth@gmail.com
The quality of the surgery is a major factor in recovery. I am not sure that there are any statistics which will guide you on this. However, you should, as Alan says, get in touch with the Derby OPA group, which is active and very supportive. Good luck.
Hi
The stats can be found here
They're a bit bald but show recovery and complication rates etc
Hi all, thank you so much for your replies.
We are waiting to hear what Derby have to say, as they don't have their MDT meeting till Wednesday. We are hopeful that treatment can take place at Derby simply for logistical reasons and it's nice to hear positive recommendations about the surgery team.
It's actually my mum who has the cancer. We are just waiting now to see wether it has spread or is localised. She does have two tumours & they are the lower part of her osophegus. The waiting just the worse at the moment as I'm sure you can all relate to.
Praying that they can operate as this I believe is the only 'curative treatment'.
I have been in touch with Professor Michael Griffin at Newcastle who is willing to look st mums case, so if we are unhappy with the treatment plan or the suggestions we can always go there for a second opinion. The Newcastle hospital has the largest gi centre in Europe and prof griffin is very well respected so that is a positive.
Anyway thank you again.
Jules X
Hi Jules,
I don't know the stats I'm afraid but I had my treatment and op at Cheltenham and Gloucester. Based on my personal experience I think you would be very hard pressed to find better care and treatment anywhere in the World.
I don't know if you can ask to be referred to a hospital of your choice but recommend finding, start by asking your local citizens advice. Good luck Jules. There is light at the end my friend........
Nick.
Hi Jules....I'm with Nick on this one....my husband had his op at Gloucester in March of this year and we have nothing but praise for the team there. He was only in hospital for 6 days..had no post op complications. He was back at work after 6 months, he eats anything and everything, takes no medication of any sort. We live 50 miles away and he had his chemo at our local hospital. I can't praise the whole team enough.......they are brilliant! !
Good luck
Take care
Deborah
Hi Jules
I'm sorry to hear of your diagnosis. I had my op almost a year ago and am thankfully coming out the other side in full health.
There's a lot to consider but there is one very important thing that you must do and that's research your condition and find out who says what from all points of the globe. Then you can have a decent dialogue with your doctors and not just be a passive recipient of good or bad news. Good places to go are canceractive.com/index.aspx - A very informative site about mainstream and alternative treatments for cancer
opa.org.uk/ - Oesophageal Patients Association
hscic.gov.uk/org - UK Stats by hospital of Oesophagectomies
Treatment throughout the country is not uniform and approaches differ and results differ hugely, although this is also based on age and many other factors.
I had a minimally invasive oesophagectomy at the Norfolk and Norwich Hospital under Mr Ed Cheong and his amazing team. This is the only centre in the UK offering the minimally invasive procedure and has a very high success rate. Ed's attention to detail is second to none and it was this, in particular, that impressed me most. I was out of hospital 6 days after my operation because of their fast recovery protocols. I am 56 my tumour was graded as Siewert type II to III T3 N2 (so fairly advanced). Since my operation I have had zero complications and I have 5 tiny almost undetectable scars. So a major question that you have to ask is how important have huge post operative scarring is. There are some other benefits of the minimally invasive technique such as lower post operative infection rates and much, much quicker recovery times. The team at Norwich are generating some very good statistics for the procedure that are just beginning to inform the national picture.
The other thing that I would say to all of you who have kindly replied here is that it is important to think seriously about diet as a means of assisting your cancer treatment. I had the advantage of needing a tube inserted in order to feed myself for the first few months as the tumour completely closed my oesophagus. The doctors were trying to make me use liquid feeds that contained large amounts of sugar to keep the calorific values up. If you do your reading you will find that sugar and glucose is just about the worst thing you can eat as it can feed and exacerbate the cancer. I put myself on a strict ketogenic diet, in spite of my oncologist's protests. I maintained my weight and I am convinced that it supported my chemotherapy in that I responded almost completely and I had almost none of the usual side effects associated with the chemo prescription that I was given. There is loads of research out there that is gradually building a picture of the importance of diet in treating cancer and preventing recurrence. READ IT!
I hope that this is helpful and has given you food for thought. Contact Sue Hales and Mike and Lorraine Ruddle who are the tireless Norfolk reps for the OPA. They can tell you more about Ed Cheong's amazing work. The contact details below are on the OPA website so I don't think it improper of me to copy them here.
Sue Hales
Tel: 07732 672816
Email: shales48@gmail.com
Good Luck!!!
By the way the hospital stats are found at
I thought I'd copied it incorrectly and added an 'r' to og because I couldn't believe that was correct!
Hello Everyone!
Back again......
We had a phone call yesterday from the specialist nurse, and mum got in to see a consultant today. They informed us that mums cancer is in the lower to middle third and is squamous. The CT scan results show that it hasn't spread elsewhere, and therefore for today at least we are feeling a little bit of hope. It was explained that treatment may entail chemo/radiotherapy and possibly surgery dependent on the outcome of further results. Things seem to be moving quickly now, with a PET scan booked for Monday and a further endoscopy on Wednesday. The last few weeks have been the worst of my life, but just knowing that my beloved mum may be able to beat this is the boost we all so desperately needed. Fingers crossed for the next set of results, but so far so good.
Thank you everyone for commenting above. This forum really does provide so much information and support.
Thanks
Jules
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