Heidelberg University Hospital

After very positive comments in other discussion areas regarding the pancreatic surgical work being done by Dr. Buchler in Germany, I thought I'd start a new thread specifically for this. There are a number of reports about Dr Buchler and his team having apparently successfully operated to remove PC tumours where the NHS were unable to. I have been in contact with Heidelberg who have requested copies of my latest CT scan. I now have these and will be forwarding them early next week. I don't know where this will go, but will attempt to document every step as a possible source of information for others. I do however know that the costs are very high and the NHS will not be able to refer patients or assist with these costs.

On a personal note, IF they come back with something for me it will be a real dilemma as my treatment seems to be going well with radiotherapy in a month or so (I know however that my PC is still officially inoperable) Something would have to discuss with my oncologist before coming to any decision.

I hope this will become of use to some of my fellow sufferers out there!

Take care

Steve

Do keep us posted Steve, I would be really interested to hear how you get on.

I'm glad your treatment is going well at the moment too - that's great. Go Steve!

Kate

x

Steve, thanks for doing this, it WILL be really useful to sufferers and their families.

So pleased to hear your treatment is going well, long may it continue to do so!

JT

Please view the 'advanced cancer patients' discussion headed 'update on my husband' from Sueba dated 5 April 2013. This appears to be the first case reported within this forum.

Regards

Steve

Hi Steve, yes I've seen that and it was hugely encouraging. Will keep everything crossed for you too.

Kate

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Hi Steve

Glad to hear you have all options covered.My husband is now 8 weeks post op (operated on by Prof Buchler)and is feeling better week by week,he starts adjuvant chemo in just under 2 weeks time,something we are feeling quite nervous about as obviously after undergoing such extensive surgery he is not quite as strong as he was.

Good luck with your continuing treatment.

Sue

This is good news Steve and I wish you well and hope you are able to have the operation.

I would have to win the Lotto to be able to afford the operation, no way could we beg, steal or borrow that amount of money even though my life would depend on it, but I'm going to ask about the chance of the operation in the UK. I'll ask at x (edited-moderator) when I receive an appointment to see them.

Good luck with your pursuit Steve

Linda

Received a response today from Heidelberg. They have reviewed my CT scans and are of the opinion that the likelihood of being able to remove the complete tumour at this time is "very small". They suggest I carry on as planned with radio chemotherapy and would like to re-assess thereafter. They also commented that my general positive response to chemo is reassuring. Looks like this aligns with the prognosis of the local MDT team, so we shall see how the tumour reacts to the rays.

Not necessarily a negative response, but it does serve as a reminder that however well I currently feel, there is still a challenge ahead!

This thread will now probably be silent until my next scan around mid August.

Take care all

Steve

Definitely not a negative response Steve and they have to be realistic. Its good that your MDT seem to have it right and doing all the right things for you.

Good luck with the radio/chemo.

Julia

Keep us posted steve we too are looking into this hospital for my father. Gathering the scans together to send them on. Praying for you

The twists and turns in this process continue. My post-radiotherapy scan indicated a reduction in tumour size, but the thing still remains inoperable according to the MDT. I sent my latest scan CD's to several places and much to my surprise, Heidelberg are now willing to undertake the operation to try and remove the tumour. I have a consultation with them next week (10th) and they will hopefully give me a date for surgery. All a bit surreal, but it works for me! I don't know costs yet but am hoping my Company Medical Insurance scheme will pick up the tab!

I'll keep you all posted and as ever will be thinking of you in your own personal struggles with this thing.

Take care

Steve

X

Got everything crossed for you Steve. You could always sell the family jewels if necessary- arf!

Oh Steve my dear friend, gosh how I will be rooting for you I send you loads and loads of good wishes and come back from your consultation with 100% positive results.

Linda x

Dear Steve

After the recent flurry of activity on the forum I checked out the Heidelberg and it looks awesome! Clearly they are at the forefront of new technology and I hope you get to use the full hospitality.

I am sure the whole forum community will be keen to learn more as your journey progresses.

We have everything crossed for you at our side for your consultation on the 10th (even the dogs are sat with crossed paws!)

Good luck !!!!

David

Wonderful news Steve....wishing you all the very best.

Hilary

Great news Steve. Wishing you lots of luck.

Dawn

Xx

Hi Steve,

Really hope everything goes well for you, the "saint doctor" I mentioned earlier, mentioned Heidelberg University to me today. He spoke of their progress in awe.

All the very best and I will be waiting to hear how you go on.

Lots of love

Kathy

So, the tests are all done and I will be having my operation on 30th October. The operation will not be carried out by professor Buchler personally, but I have no issue with that as his team members are all senior, experienced surgeons in the field. I had a fresh CT scan which showed the tumour had shrunk a little more and discussed the details with another colleague of Prof. Buchler. The tumour was still in a difficult place to operate on (I thought he was about to say no at this point!), however if we are to intervene surgically, now is the time as further radiotherapy would not be helpful as far as surgery is concerned. They are optimistic of a good outcome and I am confident that they would not be going ahead if they thought it was not likely to end well. If however things do not go so well, they will use direct high power radiotherapy to hit it (or what might be left of it). I also had a lengthly chat with the anesthetist, who explained I would have a general anesthetic and an epidural would be fitted whilst 'under' to ensure I have no pain when I awake. He also went to lengths to point out that they consider this to be a routine procedure! My otherwise good health should make recovery relatively quick (by Whipples standards).

All very reassuring, good news and all that I could have expected in my position.

As an aside, I took part in a trial of a new 64 slice CT scan which apparently gives a much better picture in a shorter time. I did not actually see the results, but hope it helped in the decision making process.

One happy family in South Wales!

Take care all

Steve

X

Steve, what wonderful, wonderful news for you all! I'll have everything crossed for the very best outcome for you.

Go get 'em kid!

Julia x

Dear Steve

Awesome news and moving quite quickly as well. I am new to your journey but certainly seems to be going in the right direction.

We have everything crossed for you

David

Good luck Steve and hope everything goes well. You must be so pleased that an operation can be done.

Lyn x

Good luck Steve. We're all rooting for you. You're a definite inspiration to everyone fighting and their families.

Dawn

X

Brilliant news Good Luck !! from another South Walian family have read your posts with great interest we were at Morriston yesterday having biospy results was that your local hospital ?

EmmaR

Steve,

I wish you all the luck in the world, got everything crossed for you and your family.

Bee xx

Thanks all for the supportive comments.... how things can change in a week! EmmaR, I was diagnosed at Morriston and have been treated at Singleton (I live nearby).

Steve