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.

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.

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

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.

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

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

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.