Successful Surgery in Heidelberg Germany - Inoperable in UK

[Rachelneal]

Just wondering how things were now? I know its a few years on. X

[sandraW]

Not sure who you are asking the question of sandrax

[KeithKerry]

If anyone can share any information about experiences they know of with Heidelberg, or how anybody would go about contacting the right people to set things in motion, I would be eternally grateful. I have to explore every possibility for my Daughter.

[boa]

It's a long time since I posted here but as an 'old stager' I can maybe help. I don't have a view or experience on Heidelberg. However, it is worth reading a thread here entitled 'Mum of 42 recently diagnosed with inoperable PC' by Ruthus. It commences on 28 November 2015. It is in Patient Experience and I found it easily this morning.

I think for Heidelberg itself this is what you are looking for https://www.heidelberg-university-hospital.com/diseases-treatments/tumor-diseases/european-pancreas-center/.

I hope that helps.

[toodotty]

It is a rather sad state that we are still having to explore routes abroad because they are still not available in the UK. This post started how long ago, 6 years? and nothing has changed over here. Re Heidelberg, they are also on my radar, my mother is German and the German relatives have done much research on my behalf. Heidelberg seems the 'go to place' in Germany and Dr Bulcher is a leader in this field, the Germans are also prepared to take more risks (within reason) to give people hope. Certainly when I sent my original scans after being diagnosed Stage IV in March, they were very efficient. I said I was exploring surgery and within one week they had come back with get straight onto Folfirinox and we will review after 6 or 12 cycles to see if this is possible. So, not "go away you haven't a chance!, but it is not an easy choice. However, having spent a lovely evening with a bunch of Whipple survivors (some more than 7 years), believe me you wouldn't have thought that they were ill as they tucked into their 3 course dinner and wine! At the moment I am looking at open nanoknife which may give similar benefits but be less invasive. Who knows …..

Erika

[hopeandprayers]

Amanda J wrote:

> In June 2012 my husband David was diagnosed with Pancreatic Cancer. We

> were absolutely devastated, to be honest we didn’t know what pancreatic

> cancer was but it didn’t take long looking on the internet to understand

> how serious this cancer is. We were absolutely devastated David was only 34

> years of age with two young daughters Jessica 5 and Molly 3. Following a CT

> scan we were told that the tumour was ‘operable’ and an operation called

> the ‘Whipple Procedure’ could be performed to remove the tumour. We were

> elated we were operable. This is where our story takes a cruel twist.

> When David was diagnosed he was given an ERCP to enable a biopsy to be

> taken and attempt to unblock the bile duct to relieve the jaundice. During

> this procedure some of the dye went up his pancreatic duct which led to

> Pancreatitis. I remember waiting outside for the procedure to be completed

> which should have taken about an hour. He was still in there after 4 hours

> and I was informed that they were trying to stabilise him and control the

> pain he was in. He remained in hospital for 10 days while the pancreatitis

> subsided and an external drain was fitted to drain the bile. Once he had

> recovered from the pancreatitis and the jaundice had gone he was booked in

> for the surgery. On the 16th July 2012 the Whipple surgery was attempted,

> unfortunately due to the inflammation from the pancreatitis the Pancreas

> had attached itself to the portal vein and the operation to remove the head

> of the pancreas was too high risk. They performed a by pass surgery and

> removed his gall bladder and then sent him to critical care which is where

> we were informed that the surgery had been unsuccessful. The surgeon did

> however tell us that they would like to try again and suggested that David

> have 3 months of chemotherapy (gemcitabine) to allow the inflammation to go

> down and they would try again in the New Year. On 20th February 2013 David

> went for surgery again. There were 3 liver transplant surgeons present

> throughout the 4 hours they tried to remove the tumour. The pancreas was

> still attached (cemented were the words used) to the critical Portal vein

> and could not be removed. They also confirmed that the cancer had now

> locally advanced into the duodenum and further into the pancreas. They

> informed us that there was no more they could do surgically for David and

> gave us the prognosis of 6 to 12 months survival which would be dependant

> on what palliative chemotherapy care David would have. We were completely

> devastated, we had only just started our life together with our family now

> complete and we were being told that David could be taken from us so young

> so quickly. He would probably not see his little girl’s 6th and 4th

> birthdays. It felt so surreal, they were talking to us but it felt like it

> was someone else they were talking about. I struggled more than David did

> with the reality of it all. When David was well enough we decided to go on

> holiday with the girls and try and understand what was happening. It was

> while we were away that my sister heard about a lady who had gone to

> Heidelberg in Germany and had successful surgery performed by Professor

> Buchler at Heidelberg University Hospital. When we returned we flew

> straight out to Heidelberg for a consultation which included various blood

> tests and scans and after the tests we met with Professor Buchler who

> confirmed that he could perform the surgery.

>

> Why could the UK not perform the surgery and deem us in-operable but

> Germany can do it? Germany, specifically Heidelberg is much more advanced

> in Pancreatic Cancer surgery. They perform over 2000 Whipple surgeries of

> different complexities every year. In the UK Whipple surgeries are spread

> across all the different UK hospital so never building up that centre of

> excellence that Germany are doing.

>

> We returned to Heidelberg on 14th May 2013 and after 11 hours of surgery

> Professor Buchler successfully removed David’s tumour. The surgery

> involved undertaking a major portal vein resection to remove the pancreas

> away from the portal vein. The surgery was extremely complex and as a

> result David was left with an ileostomy which can be reversed at a later

> date. It was also confirmed a few days after surgery that the margins

> removed during surgery were all clear too so all visible traces of cancer

> had been removed. This ‘thing’ that was going to take my husband away from

> us was now out. We were over the moon and could not thank the staff

> enough, the aftercare we received while David was in hospital was fantastic

> and there were no issues with language barriers everyone spoke very good

> English. Considering David had 3 major surgeries in less than a year he

> went on make a steady recovery. He was discharged from hospital to the

> hotel after 12 days and we flew back to the UK 19 days post surgery. David

> continues to make a full recovery and has recently returned to work 3 days

> a week and living a normal life again. His CA19-9 levels which were

> previously in the thousands are now within normal range at 25. He will

> continue to have 3 month check ups with oncology and every three month

> milestone we get past is a step closer to beating this terrible cancer. I

> know Heidelberg will not be able to help everybody and may not be able to

> go any further than what the NHS has advised, but for us, if we hadn’t had

> the surgery we would be in a very different place now. It’s worth a

> consultation in Germany!!!

>

> We know we still have a long road ahead of us but we will take one step at

> a time and every 3 month check we have is another step closer to beating

> this cancer. Professor Buchler knew our UK surgeon by first name and when

> we returned to the UK we asked, why we were not told about Heidelberg? The

> response was very similar to the responses I am reading on the forum, the

> surgery that is being performed is not a ‘proven success and it could give

> people false hope of cure. The %’s are in fact the same %’s that you are

> given if you are deemed ‘operable’ and given the Whipple in the UK.

> Germany are operating on more advanced cancers that the UK deem inoperable

> but unless we try and take that next step then you will never build up the

> case studies and the survival rate will never improve in the UK. David

> and I have discussed in detail the possibility of the cancer returning and

> both absolutely agree that if the cancer returned in 2 years, 3 years 4

> years then it is better that the 6 to 12 month prognosis we were given in

> February this year. It also might never return!!!

>

> The surgery cost 52,000 euros, if you add in flights, hotels and transfer

> from Frankfurt to Heidelberg it’s all cost just over £50,000 sterling. It

> is a lot of money, but it has given my husband another chance of life and

> the chance to build more memories with his family. When we returned to the

> UK after the consultation and told our family and friends the surgery could

> be done and the cost, a poster was created and the fundraising began. We

> are amazed that after 5 months our friend’s, family, colleagues at work

> have raised an amazing £55,000. We have been able to pay back the money

> borrowed which is just amazing. In total there were over 30 events

> organised from coffee mornings, sky dives, quiz nights, rowing challenges

> and the final big event the Fundraising Ball which we held two weeks ago.

> You will be amazed at how much people are willing to donate for raffle and

> auction prizes.

>

> As I said previously we have a long road ahead of us still in beating this

> cancer but we should also have a choice about all the options available to

> us which is where we feel let down. If it hadn’t been for a chance meeting

> with my sister we might never have heard about Germany until it was too

> late. The UK can’t continue to send people home with the ‘inoperable 6 to

> 12 months’ when other countries are moving forward in trying to improve the

> survival rates of pancreatic cancer.

>

> I read through the posts on the forum and it brings me to tears. It is such

> a horrible cancer and the awareness needs to be raised. We need to be

> getting the improvements in pancreatic cancer that we have seen in beating

> breast and prostate cancer and learning now from the success of more

> advanced surgery in Germany. I have watched the news only this evening and

> one of the stories is again about Germany being much more advanced than the

> UK, this time on in bowel cancer. Why is the UK so so different? I

> suspect money!!!

>

> David had his 6 month post surgery CT Scan and CA19- 9 bloods taken a

> couple of weeks ago and we are over the moon/amazed that there is no sign

> of ‘cancer’ in the scan and his blood level remain normal. If we had not

> gone to Germany he would probably be in a hospice now based on the UK

> prognosis. This makes me/us all the more determined to try and move

> forward and make someone listen and will be making appointment with our

> local MP to share our story. We have already to spoken to our local Mayor

> who wants to support our story.

>

> I wish everyone on the site that is affected by pancreatic cancer all the

> very best in fighting this cancer and please if you would like to talk or

> require more information please contact me. I wish I had come onto this

> site when my husband was diagnosed 18 months ago because the support is

> fantastic especially when you are given the news the only people that

> really understand is the people going through it and it’s lovely to see so

> many people getting comfort during an extremely difficult time. .

>

> Thank you for reading our story I hope you find some hope and wish you all

> the very best with your journey through this difficult time.

>

> All the very best

>

> Amanda and David..x

Hi

Could you please please give me the information for the hospital/surgeon that you contacted?

Katie

[lucyjev]

Thank you for sharing. Can you give an update on how Davis is now please

[Borobi]

Hi Lucyjev

If you go back to the original post and click on AmadaJ’s username it’ll bring up a list of all her posts.

If you read them you’ll see that her husband sadly died a few years ago.