Successful Surgery in Heidelberg Germany - Inoperable in UK

[Amanda J]

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

[J_T]

Just WOW!

Thank you for sharing your story. So pleased that David, who is very young, has got this second chance.

Just to clarify a point, do you mean the tumour was attached to the portal vein? I'm not sure if mets to the liver would disqualify you for surgery even in Germany. It does seem though that they AND patients are willing to take risks and as a result more people are surviving and expertise is growing.

Amazing story!

[belgrade]

What a wonderful story which will inspire others new to this fight. I wish you and your husband all the very best for the future.

Hilary x

[Amanda J]

Thank you for your post, just to clarify in David's situation it was the Pancreas that was attached to the Portal Vein not the tumour. There was no mets onto the liver but there was a lymph node involved which was also removed.

Every case is differnt and Germany will not probably be able to help everyone but they seem to be prepared to go to the next step which the UK for whatever reason are not prepared to do.

Amanda.

[Sueba]

Hi Amanda

Thanks for posting about your experience.

My husband also had a whipples in Heidelberg in February 2013 after being diagnosed with advanced inoperable pancreatic cancer last October and was basically given 4 months to live by the surgeon.

We are not saying it's a miracle cure but he is in a much better place than he was last October,enjoying life for now and trying to give back in the form of fundraising.

If you click on my name you can read his story.

Sue

X

[MSH]

How good to read a success story, especially after the chance seemed to have slipped away. This disease is so often one of ups and downs.

My best wishes to you both.

Mark

[Carole McGregor]

Amanda

I'm so glad you posted this story. My husband died on 16th October (Clive's story is on my thread). I had a meeting with his oncologist this week to try to get some answers as I have many concerns regarding his treatment. I told her that throughout our year long battle with this disease, Clive and I were constantly frustrated by the defensiveness and professional arrogance of those involved in his 'care'. Any mention by us of Heidleberg, Nanoknife or any other treatment not offered by them was immediately dismissed as overhyped nonesense. As I told her, I've only ever worked in large successful corporate organisations where the key thing that motivates and excites people is the constant drive to be better, develop new strategies and business opportunities, keeping tabs on what the opposition is up to and trying to always be one step ahead. That culture simply does not exist in the NHS, particularly as regards pancreatic cancer. How on earth are we to advance in the UK if we are not prepared to learn from the experience of others ?

I left her with this - I know of five women who post on this forum regularly (myself included) whose husbands were all diagnosed around the same time. Of that five, only one - the lovely Sue - still has her husband with her and he had his tumour removed in Heidleberg. Nuff said.

Keep up the good work Amanda. The only way anything will change is if we all shout loudly together.

Regards

Carole

[InfoForMum]

Thank you again for this!

My mum has a borderline resectable diagnosis so I am obviously keeping an eagle eye on Heidelberg as an option and next week will be sending scans to our UK nanoknife specialist to line him up in case the news of our mid chemo scan isn't good.

I've never been completely comfy with the concept that the surgeon wanted to stabilize rather than shrink Mum's tumour hence chemo and chemo/radiotherapy. If he needed to stabilize not shrink it, then why not operate now?! We trust her surgeon, but I will be seeking a second opinion from Germany - had toyed with it, now determined. Have already queried with our current guy whether risking the wait to have the CRT is worth it after chemo.

All bets are obviously off surgery-wise if this bloody thing has spread, but thanks to stories like yours, Steve's and others I'm not giving up the fight and neither is she.

Again, thank you for taking the time to share. I hope David gets many years with his girls. I'm ready to shout and believe me folks I've got a set of lungs on me that are hard to ignore

Sarah

XXX

[Slewis7313]

Amanda, I found your post really interesting especially as I was released form Heidelberg today after a failed Whipples procedure. I must however concur with everything you say about the place and I am simply one of the unlucky ones who has a condition which is inoperable....... But at least with Heidleberg we were able to give it a shot, something I will never regret. Interestingly enough, my Oncologist in the UK contacted me just before I left for Germany asking for contact details for Heidleberg!! They don't do miriacles here, but the sheer volume and compelxity of the procedures carried out here place them very well to have a go at most conditions. Before they started, they were optimistic and it was clear that they certainly determined to have a good go at removing my tumour. For information, my tumour is small but totally encasing and infiltrating a small artery at a branch with the SMA which makes resection too dangerous and could potentially shorten my life.

I'll update the forum on my experience when I am settled back in.

People do need to know about this place to give them the option to decide if it right for them.

Take care and best wishes to David.

Steve

[Winkle]

Dear Amanda and David,

Your story is fantastic and whatever needs to be done to improve the profile of pancreatic cancer and indeed the other less well supported cancers count me and a legion of helpers in.

I have on the basis of what you have written decided to set up a consultation as soon as my first three month cycle of folfirinox is completed.

I am 52 with a grand daughter of two and a half, and felt so sorry for myself when diagnosed as I had so little time with her. To hear of two little girls, who now due to the tenacity of their parents have a happy future.

Love Kathy

[kwaitang]

It was so nice to hear of a good news story. It has given a lot of people not only information but hope. Can I ask, did you contact the hospital yourself or did your doctor do it. My husband is going for his first 3 month scan next week after being on chemo and trial medication. We will be seeing the doctor the week after that and will ask him about the Heidelberg University hospital.

Thnk you for sharing your story with us - I am feeling a little elated at even having a slight chance that we may be able to do something. Arlene.

[Amanda J]

Thank you for all the replies received. I would like to apologise for not getting back to people that have posted sooner, the forum seemed to be inactive for a couple of weeks and then I was away for a couple of weeks.

Steve, I am so sorry to hear that your surgery in Heidelberg did not go as planned. I have read your thread and you really are an inspiration, you have not let this thing beat you and still continue to have a positive outlook and I wish you all the very best for the future. You like my husband David would not give up and try whatever options were available. I hope you continue to fight this and have a successful outcome.

Arlene, the hospital did not give us any information with regards to Heidelberg, they simply said there was nothing more that could be done for my husband and he was given the 6-12 month prognosis. When we asked after we returned to the UK 'Why did you not tell us about Heidelberg? The response was 'we do not believe that it was the right thing to do and would not recommend the surgery as there is no evidence that the cancer would not return’. Professor Buchler knew our UK surgeon by first name so they are well aware of what Heidelberg are doing. They did not give my husband survival until Christmas this year and now we are 2 weeks away, he is fit and healthy back at work and looking forward to Christmas with clear scans. All I can advise is get a second opinion, just because a doctor, surgeon, professor in this country say they can’t help there may be someone else that can.

When you mention Heidelberg to the UK hospitals they instantly dismiss it and consider it as 'aggressive surgery' with no evidence that it would not return but as Sue mentioned in her post 'its not a miracle cure' and they can't guarantee successful outcomes but they are willing to try and build case studies which is a step further than the UK.

I always said from the outset I would not stop fighting this cancer until my husband took his last breath. We know we have a long road ahead but we are ready to fight and at this moment in time if it wasn’t for Professor Buchler and Heidelberg we would most definitely be in a very different place going into this Christmas so we know it was the right thing to do.

Carole, you are right I also work for a corporate organisation that are constantly benchmarking to ensure ewe are ahead of the field in innovation and best practice techniques and am puzzled as to why surgeons from this country are not wanting to learn from form successes being realised elsewhere.

I hope that our story has given some hope to people affected by this cancer and if anyone would like any further information or want to ask any questions please contact me.

Wishing everyone all the very best.

Love Amanda and David. X

[cestrian]

Hi Amanda

I raised the subject of nano-knife surgery with my GP who, being unaware of it dismissed it out of hand with the comment "you know there is no cure for you your cancer is inoperable". To be fair this is the first negativity I have encountered from any professional since my original oncologist gave me "4 months or so" early in July.

Seeing my Professor at the Cancer Centre next week and will raise the subject with him in the hope that he is more enlightened. I know that like Heidelberg it is not for everyone and I do have lesions in lung and liver so a bit more complicated. Nevertheless I am pretty determined to pursue this if only in the furtherance of research but obviously in the hope that the treatment will both suitable and of benefit to me.

I wish you and David all the luck in the world in his continuing remission from this evil illness - you both surely deserve the long and happy family life that, at 69 with almost 47 years of marriage behind me, I have enjoyed an continue to treasure.

Love and Peace

Mike

[Amanda J]

Mike,

I am not sure why the NHS are so negative towards other treatments other than chemotherapy. Before we knew about Heidelberg we also asked our oncologist about the Nano knife and we were told that it was not a ‘proven’ effective technique on Pancreatic Cancer and therefore would not be an option. We felt like we were being pushed down just one route, chemotherapy or nothing. We actually did our own research and went for a private consultation at the XXX Hospital in London and after looking through David’s scans the Professor was willing to try the Nano Knife as David’s tumour was only 3 cm so relatively small and within the parameters. Again, it came with no promises and it has not been widely used on Pancreatic Cancer (he had only performed about 12 on this type of cancer) but when you are 35 and you have 6 months prognosis then you will try anything. We now know the hospital that my husband was under has the Nano knife in house available on the NHS yet they choose not to use it. My biggest frustration with it all is they won’t try. How are they ever going to prove something works and build up case studies if they don’t offer it to people who are willing to try it? We never ended up having the Nano Knife as we went to Heidelberg and had the tumour successfully removed but it has got some very positive results and David was planned in to have it performed in London.

We have just received David’s date through for the Ileostomy reversal which is planned to take place on 13th January 2014. It will coincide with the 9 month post operative check up so we are hoping both surgery and blood results will be positive and we can then move on to the next step in regaining a normal family life.

Our little girls have been amazing through it all they have been the ones that have kept us going through this madness. They are still very young so it has not impacted on them too much just spending a little more time with Nanny and Grandad and their Uncle and Auntie while Dave had his operations. We had 3 weeks away from them while we went to Germany for surgery which was really hard. We went to watch our 3 years olds nativity today which was lovely it was very tearful but it made everything worthwhile it is our 5 years olds nativity next Friday so can’t wait for that. We are looking forward to a very different Christmas this year and hope its one of many more to come.

I wish you all the very best with fighting this cancer and hope you and your wife can share lots more memories. 47 years married that is fantastic.

Take Care

Amanda

[cestrian]

Hi Amanda

At our age, although horrified at my diagnosis and prognosis, Jo and I could at least comfort ourselves that we have had a great lifetime together. That is why I'm so delighted to hear of Dave's successful treatment and am inspired by the intrepid Steve's continual search for that one thing that will make a difference.

We have so much sad news on hear that everyone is incredibly encouraged to hear of "the one that got away"! May your God bless you, Dave and your family!

Oh and after 47 years we're in a very nice, canopied four poster bed tonight at a Midlands hotel - a night of passion with Jo snoring and me typing away on my tablet!!

Love and Peace

Mike x

[PCUK Nurse Jeni]

Hi Guys,

Thanks for all the postings regarding different routes for treatment, and Mike, I hope the night away was splendid!

Can I please take this opportunity to clear up a few things about Nano-knife? As you are probably aware, the UK is heavily governed in medicine by evidence based practice. This is what determines what treatments you will be able to have, what works, what is licensed by NICE (all important!!) etc...The problem with Nanoknife is that it has mainly been used in the USA, which is NOT governed so tightly by evidence based practice, and anyhow, everyone pays for what they have, so you can have whatever is going! Nanoknife has had research done on its safety, and this has been positive, in that the treatment is safe to use, especially where there is a skilled professional carrying it out. This went to NICE consultation in the UK, and NICE basically said it could be used in the context of a clinical trial only (for NHS patients). Obviously, you can have it privately if you are in a position to do so, and it is also covered by health insurance.

Until we have some sort of clinical trial with efficacy data, hands are going to be tied NHS wise in using this. Amanda, you say that you now know that the hospital had Nanoknife available on the NHS? I have been in contact recently with the Nanoknife contact in the UK, and there are plans to put some machines in a small number of bigger hospitals across the UK - some of this has already started, but the criteria might be different, for example, at one hospital is strictly for use in a prostate trial. There may be some cases where this can be used on pancreatic cancer patients, but remembering, this is new technology in the UK at least and practitioners will need training on using the machines etc...The exact ins and outs of who will get to be treated by this I can't say, as I know that it will be open for all cancer patients.

I also know that there is great interest in trying to make this treatment more widespread. Pancreatic Cancer UK is really keen to help make sure that pancreatic cancer patients have access to any treatment that shows promise and that data is collected so that we have the evidence that is needed to either rule these treatments out or make them available to everyone on the NHS. We are looking at how we can do this and I will make sure we post updates on the forum about progress. We hope that there will be a positive outcome, so watch this space.

Jeni.

[Slewis7313]

Hi Amanda, I am so pleased to hear that David is doing well especially as such a young family. It looks as though you have had to steer a tricky course with little support, but you have made the right decisions when needed. I can't match Mike's 47 years just yet, but Margaret and I did manage 40 years on Tuesday, though there was role reversal with me pushing out the zzzzz's whilst Margaret ensured the champagne bottle was empty! It was particularly poignant as 12 months ago I was certain we (I) would not make it this far.

Good luck to David with the next surgery and enjoy your Xmas celebrations..... We certainly intend to!

Steve

X

[PCUK Nurse Jeni]

Congratulations Steve and Margaret on 40 years marriage! Amazing!

Yes Steve - remember those days last year. What a whirlwind of a year, but as you say, you have made it thus far - long may it continue!

Have a great Christmas all of you.

Take care,

Jeni.

[J_T]

Happy Ruby Wedding Anniversary Steve and Margaret xxx

[InfoForMum]

So, so heartened by this whole thread m'dear. We fought and won a battle with our oncologist and surgeon to have them agree to still leave surgery on the table as an option post Nanoknife. There's chapter and verse in my thread, but we had a harsh week or so getting from "only try nanoknife if you have given up on surgery" to this point. Now we have a debate about chemoradiotherapy. No-one, including Heidelberg will try surgery if you haven't gone through it, but against the background of most recent trials no-one, including the chap who'd do it would give mum more than a 50% chance of still being operable at the end of it.

Another battle for another day, but for now we're also looking forward to Christmas, with Mum treatment free for a wee while, all her grandchildren happying turning her house upside down and her son in law who volunteered as chef for the day soon to find out what he let himself in for in the house of a woman who rules that cooker with a rod of iron.

Take care and I hope you, he and the girls have a fantastic time. My girls are 4 and 7 so know how super special christmas is with them that age

Sarah

XXX

[Tas]

Hi Amanda,

Just wanted to ask how your husband is doing now?

Regards,

Tas

[sandraW]

Hi Taz,

I think you will find if you look through Amanda's posts you will see she started another thread, and that she sadly lost David in January 2015. take care sandrax

[Tas]

Thanks for letting me know Sandra.

Dear Amanda,

My heart goes out to you and your little girls. May God give you strength in this tough time. And may you never have to face any tough time ever again.

take care,

Tas

[Marieb]

What an inspiring story. I am Newly starting out on my journey of fighting this foul disease (I am 45 and have 4 children) and need all the hope and information I can get. Thank you for sharing. Marie

[creonqueen]

In defence of the NHS, they saved my life at xx Hospital - having been given the inoperable, incurable, palliative care only card at my local hospital. The PLANETS team at xx specialise in extreme surgery and will do things that other hospitals would not consider. Admittedly, xx only came to hear of me because of an email I sent!

You are entitled to a second opinion under the NHS.

You can find my story under Rarer types/Susan