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hopeandprayers
Posts: 5
Joined: Tue Aug 25, 2020 10:39 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby hopeandprayers » Mon Aug 31, 2020 12:55 pm

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
Posts: 3
Joined: Thu Sep 17, 2020 8:28 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby lucyjev » Tue Oct 13, 2020 9:53 am

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

Borobi
Posts: 22
Joined: Wed Feb 20, 2019 9:23 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby Borobi » Wed Oct 14, 2020 4:22 am

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.