A forum for advanced pancreatic cancer issues

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J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Heidelberg University Hospital

Postby J_T » Sat Nov 02, 2013 6:37 pm

Hi Steve and family. Just got back from a holiday with family and I'm trying to catch up with everyone. I was SO disappointed to hear the operation was not successful, it must have been a blow to you all.

You are such a strong and positive family (thank goodness for those!) I know you will continue the fight in true Steve fashion, upbeat and positive at all times.

Onwards and upwards indeed!

Julia x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Heidelberg University Hospital

Postby Slewis7313 » Sat Nov 02, 2013 10:37 pm

Thanks for the comments Julia and I hope you had a good break, though understand it would gave been a challenge at the same time.

The Lewis family are indeed regrouping and working on the next plan of action which should take shape after meeting the Oncologist on Tuesday. The surgeons here have stated repeatedly that the tumour has not spread and is small, so should be hit with aggressive chemo as soon as possible to try and shrink it further (though surgery is no longer an option).

It's been a hard week, both physically and mentally but the story is far from over. It will be interesting to see what the team in Swansea have to say on my return, though in all honesty they have been totally supportive from the outset.

Tubes out tomorrow, my willy and I will be glad to see the back of them!

Take care

Steve
X

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Heidelberg University Hospital

Postby belgrade » Sun Nov 03, 2013 12:39 am

Been away for a week Steve so have only just caught up with news on the forum. I was so sorry to hear that your surgery was unsuccessful, but wishing you a speedy recovery and best of luck with the chemotherapy.
Hilary x

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Heidelberg University Hospital

Postby LindaH » Sun Nov 03, 2013 8:13 am

Well done Steve, so proud of the way you and your family are coping. Keep well Steve x

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Heidelberg University Hospital

Postby LindaH » Sun Nov 03, 2013 8:17 am

Oh Holly, I've only just read your message and so sorry the operation was unsuccessful. Though like you say, if you don't try these chances you are given, you'll never know what could have been.

Okay, well one door has closed, but a multitude of others are now opening.

Thank you so much for keeping us up to date.

((hugs)) to you all.

Linda x

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Heidelberg University Hospital

Postby cestrian » Sun Nov 03, 2013 9:22 am

Hi Steve

Ouch!! My trials team have never really discussed the size of tumour with me apart to agree that it's inoperable and to confirm it had stabilised after first cycle of chemo. I'm sure you will continue to consider all options open to you and am inspired by your inner strength. In fact so much so that I will push the Prof more when I see him in a couple of week's time, in fact I think I'll take my stroppy daughter with me to press the point! Can't complain as apart from slightly dodgy guts on and off I still have no other problems though of course my actual pancreas could be sending out all sorts of distress signals that I just don't receive after my nerve separation op!

Good luck with your continuing recovery from your surgery - take it easy and be kind to yourself as just the general anaesthetic is draining. Look forward to your next foray!

Love and Peace

Mike

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Heidelberg University Hospital

Postby KATB » Sun Nov 03, 2013 9:44 am

Hi Steve,

Been away and just caught up with this. So sorry the surgery was unsuccessful but you are all doing brilliantly soldiering on and looking out for the next option. Chin up and keep us all posted.

Much love,

Kate
x

Thriae
Posts: 29
Joined: Tue Oct 22, 2013 11:48 pm

Re: Heidelberg University Hospital

Postby Thriae » Wed Nov 06, 2013 7:58 pm

Hi Steve, how are you recovering? Hope you are managing to remain positive.

Love and best wishes

Aimie

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Heidelberg University Hospital

Postby kwaitang » Mon Nov 11, 2013 4:09 pm

Steve. I have read through all the posts and have to say I was on the edge of my seat as I followed your progress. I was so sad that it didn't work out for you. You seem positive and upbeat - I envy you. I wish I could be more like you so that I could be of more use to my husband but unfortuately we are not all the same. I wish you all the luck for the future. Best wishes. Arlene. x

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Heidelberg University Hospital

Postby karen17 » Mon Nov 18, 2013 4:32 pm

Hi Steve,
I haven't been on the site since I wished you good luck for the operation but logged on today to see how you are. To say I'm sorry would be an understatement :-( However the Steve we all know and love who has picked us all up when down and given us many a laugh will I am sure carry on the fight with determination and huge strength of character.
Hoping you and 'willy' are feeling better now the tubes are out. You keep your chin up and fight on!
Karen xxx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Heidelberg University Hospital - a recap

Postby Slewis7313 » Fri Nov 22, 2013 1:13 pm

Heidelberg.... My take on things.

So I finally made it to Heidelberg for an attempt at a Whipples. It was made very clear to me from the outset that whilst the team were very optimistic, there were no guarantees of success.

As it transpired, what they found after opening me up was (and remains) totally inoperable. The tumour is small (2.2cm) but encircled and infiltrated an artery at a junction with the SMA. Had it been the SMA and clear of any other arteries, they would have considered arterial resection, but history shows an attempt to resect my condition would put me at risk of thrombosis' in the future with potentially dire consquences. The position of the tumour also made the planned use of radiotherapy during the operation dangerous due to the proximity to my intestine.

Some samples were taken and analysed, confirming no signs of secondary disease. I was closed up after one and a quarter hours on the table and moved to a normal ward for recovery and discharged ten days later.

The surgical team made it clear that I am not alone in having a failed attempt at surgical removal of a tumour. They appear to be prepared to attempt surgery if there is a chance that it might be successful. Whilst mine failed, I am sure there are many people still alive and doing well as a result of this 'lets give it a try' philosophy.

I can therefore confirm that Heidelberg do not (unfortunately) perform miracles, but simply seem to have different criteria when deciding to operate. It has become clear that CT scans do not tell the whole story and there is a certain amount of experience-based judgement when making the decision for surgery. In my case, the available information indicated surgery MIGHT be successful, so it was decided that it was worth a shot. We know from other stories regarding Heidelberg, this has lead to some really good outcomes. This philosiphy is self-feeding as it means more operations are attempted, increasing experience and expertise proportionally. They carry out between five and seven Whipples attempts every day, but the whole system is geared up in the same way for all surgical procedures, not just Pancreas related. Their surgical skills are renowned with patients coming from across the world for treatment and not just within Europe.

A couple of final personal notes:

Any regrets?..... Absolutely not, as I would always have wondered if surgery was an option.

Cost / insurance? My Employer's insurance called today to confirm that they will pay all Hospital costs (€52,000). This was a one-off discretional payment agreed by the Trustees and typical of the amazing support I have received from my Employer (Fujitsu) from the start of the illness.

By Pancreatic Cancer standards, I remain incredibly lucky!


Steve

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Heidelberg University Hospital

Postby PCUK Nurse Jeni » Fri Nov 22, 2013 5:32 pm

Steve,

Many thanks for taking the time to post this.

Jeni.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Heidelberg University Hospital

Postby J_T » Fri Nov 22, 2013 6:11 pm

This will be of great use to others considering Heidelberg Steve.

All I can say is 'what a man!'

X

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Heidelberg University Hospital

Postby kwaitang » Fri Nov 22, 2013 8:41 pm

You are an inspiration Steve. Even though your own operation was unsuccessful you are still giving hope to many others with your experience of Heidelberg. I wish you well. Thank you. Arlene.x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Heidelberg University Hospital

Postby InfoForMum » Fri Nov 22, 2013 10:04 pm

Steve I've been looking out for an update and as always you've been incredibly generous with helpful insight. Assuming it's nanoknife next? If so you and my Mum might be nanoknife buddies (you might have seen my thread update). Apart from the bloody awful placement of your tumour her and your situation are very similar (2.5cm in uncinate process with splenic/portal vein junction and right branch hepatic artery involvemnt with question marks over left branch for us) with no signs of distant spread.

Have been thinking and talking lots about you with mum, she asked often about you in the run up to surgery and was distraught on your and your family's behalf about the outcome. Overall you have been and remain an real inspiration for her.

Love the courage you unceasingly show and will look out for the next chapter.

Onwards and upwards!

Sarah
XXXX