Topic: BEST UK HOSPITAL FOR CC?

My dad was recently diagnosed with cc. It

Re: BEST UK HOSPITAL FOR CC?

Hi Ash,

Welcome to the site although I am sorry that you had to find us. I know how you are feeliing right now as I felt the same when my dad was diagnosed. He was diagnosed with inoperable CC back in late summer of 2008. Can you give us more information as to your dads diagnosis and what his doctors have said about regarding treatment options?

Some hospitals and doctors in the UK that you may wish to contact are -

Dr Valle, Christies, Manchester
Dr Peter Lodge, St James, Leeds
Prof David Cunningham, Royal Marsden London.

I hope that you will keep coming back here and let us know how you get on.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: BEST UK HOSPITAL FOR CC?

Dear Ash, welcome to our wonderful family. We have quite a few members from the UK so you are definitely not alone. Like Gavin asked, can you tell us a little more about the diagnosis. Has a game plan been set in place? I promise you once it is, you will feel better. We also have some  miracles on our board as well. My husband is one of them. You have come to the right place and feel free to ask, vent or advise. Looking forward to your posts.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: BEST UK HOSPITAL FOR CC?

Ash....you might also want to use the search function, top, right hand side, and enter UK hospitals, or physicians UK, etc.  Previous conversations will appear re: treatment centers and doctors in the U.K.
Good luck,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: BEST UK HOSPITAL FOR CC?

Hi Ash
I am in the UK and my mum was recently diagnosed as well.  We are actually in Wales and having to travel to England to get a decision on surgery.  Tomorrow we are off to Basingstoke to the liver unit there.  I don't know whether they have much experience of cc so I willl be asking them some hard questions and if they are not good enough I will be taking Mum to one of the hospitals that Gavin listed above.
I have heard that Birmingham has a good reputation too.
It is about two and a half months since my Mum was diagnosed and like you I would read all the stories on here and just cry.  Now I am at the stage where I am ready for a fight and will do anything, read everything and contact everyone in order to get the best treatment for her.
As for private vs. NHS well the doctors and specialists have all said to go NHS and that going private will not speed things up.  I think this is probably true at the beginning but if my Mum gets turned down for surgery then we may go private for a second opinion, and for any 'newer' treatments such as Cyberknife and sirspheres.
Warmest  wishes to you and to your Dad

Jemima

Re: BEST UK HOSPITAL FOR CC?

Hi Ash.
I know how you feel, it is terrifying and heartbreaking when you go through the diagnosis.  My dad was diagnosed in December, and had surgery at St James hospital in Leeds.  Prof Lodge is head of the team there; I believe he does the Liver transplants.  He has saved many, many lives.  We could not fault the treatment at the hospital, it was wonderful.

It is important to find out a bit more about the diagnosis, and what treatment the specialist thinks is possible?  My dad's initial treatment at Bradford Royal Infirmary was very good, and they didn't hesitate to refer him to Leeds when they thought surgery was possible.

We have been told that going private would not have speeded things up (although the diagnosis may have been marginally sooner) and the treatment would be exactly the same.  My uncle who's a GP says that the cost of going private would be prohibitive for most people, as you then have to pay for ALL your treatment, drugs etc.  They also said that going private would not help because there just aren't the private oncology facilities.

Let us know how you get on, stay strong.  I always found it eased thing to keep reading and researching, but I suppose we all find our ways of dealing with it.  Thinking of you.
Kate

Re: BEST UK HOSPITAL FOR CC?

Ash - just wanted to let you know I am thinking of you.  Dad was diagnosed in January with inoperable CC, which means we have no idea how long we have left with him.  I know exactly what you mean about not being able to stop the tears, and not knowing how you really feel.  It gets better... once there is a plan, even if you know that the plan won't keep your Dad with you forever, really does make you feel better.  You will have your days when if feels like the world is ending, but those days are all part of the process, I think.  Please just know that you have people all over the world thinking of you and praying for you and your family.

Jen

Re: BEST UK HOSPITAL FOR CC?

You might want to ask Helen Morement (I hope I spelled that right). She has a cc foundation in England called AMMF. She probably knows where the cutting edge treatments and best practices are. You could also check the Gem/cis study to see where the research was done.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: BEST UK HOSPITAL FOR CC?

I was diagnosed  with cc (ampullary cancer) in York Hospital.  And was then referred to St. James Hospital in Leeds.  I had a whipple operation last april by keyhole surgery.  1 lymphnode involved.  Six months of chemo.  The name of my surgeon was Dr Krishna Menon.  He is the best in the business for cc so I have been informed, and he was the first in the UK to do the whipples by keyhole.  He is in Professor Lodges Team.

Re: BEST UK HOSPITAL FOR CC?

Thank-you July girl and congratulations on your 1 year anniversary. It is inconceivable to me, having a Whipple, keyhole. WOW! CC procedures are coming along even if slowly. That is amazing and so are you. Now your is a story of hope!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: BEST UK HOSPITAL FOR CC?

Yes Lainy.  Dr Menon is an amazing surgeon.  All the other nurses and doctors at St. James are in awe of him.  And he is such a kind and compassionate too.  Very warm and friendly. 

My whipples wasn't without it's problems though.  It was 12 hour surgery (takes a lot long by keyhole).  Then I had problems with a fistula where the head of the pancreas had been cut away.  I was vomiting bile for two weeks, and being fed on TPN for 3 weeks.  Had a bowel infection too.  But it was all worth it.  The fistula healed on its own.  Worst thing was the drainage bags.  They were so uncomfortable, because one of the junior doctors changed them and did the stitches too tight. 

If I understand correctly, keyhole surgery is considered for all ampullary cancer patients.  Whether keyhole is used for higher up in the bile duct I don't know.  But Dr. Menon is a truly amazing man. 

Ash, try to get to St. James.  It is a centre of excellence in the UK, and the biggest cancer centre in Europe.  good luck. xx

Re: BEST UK HOSPITAL FOR CC?

And all I have to show for it are three tiny tiny scars on my abdomen, (like little dots), a half inch scar inside my belly button, and a scar of about 4 " long in the pubic area where the tumour was removed.  and that cannot be seen.  the wounds healed within days.  I have 6 monthly check ups, and am so far okay.  Hoping for no recurrence.  Love to all of you who are fighting this beast.

Re: BEST UK HOSPITAL FOR CC?

Julygirl, that is just so amazing to us! Since Teddy's Whipple, will be 5 years in August, he has gone to the ONC every other month with LABS drawn every month. He had a recurrence 2 years ago when it returned where his duodenum used to be and we zapped that one with cyber knife. We are now awaiting results from tests he took Friday as there are 2 new tumors. One seems to be at the Ampulla of Vater (top of Pancreas) and the other in the upper right "crook" of his intestines. This waiting part is the pits. I told Teddy yesterday about your key hole surgery and he almost fell off his chair! HE also healed as you did with a couple of fistulas, hiccups for 6 months etc, etc, but after that he did just fine and he is going to be 78 this Fall. Continued success and keep us all posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: BEST UK HOSPITAL FOR CC?

Totally agree about Mr Menon, a wonderful surgeon, and it's amazing that they can now do it by keyhole.

Julygirl - what chemo did you have?  I understand that in the UK the standard of treatment after surgery is just wait and see (no chemo) and the standard treatment for inoperable cc is Gem/Cis?
Did you enter a trial like my dad - Bilcap?

Ash - hoping to hear what your options are.
Kate

Re: BEST UK HOSPITAL FOR CC?

After my recovery from the whipples, Mr Menon referred me back to York Hospital so that I wouldn't have to keep traveling to Leeds,  and I came under the care of Dr Kim Last, medical oncologist.  I was on 5-FU once a week for six months. I had the chemo because the pathology report showed that I had involvement in one lymph node.  All the tumour was taken out, and the chemo was adjuvant chemo, to hopefully kill off any cancer cells which might be floating around.  No, it was not a trial.  I tolerated it very well, my hair got a bit thinner, and I had runny eyes and nose and red hands and brittle nails, and only one incident of upset stomach, for which I missed a week of chemo, and it was tagged on to the end. 

I forgot to add that after surgery I lost nearly two stones in weight.  But I have regained all of the weight I lost.   I have to take creons for the rest of my life, but that is a small price to pay.

Re: BEST UK HOSPITAL FOR CC?

Thank you everyone for your kind words and support.  I don