Mum of 42 recently diagnosed inoperable PC

[WifeampMum]

Ruth, Dianne and any one else interested in Whipple median survival statistics

For what it's worth I have Googled and found the following stats about median survival following Whipple surgery. They are from a 2016 paper in an authoritative journal. The study involved 561 patients who had all undergone a Whipple between 2006 and 2012.

Summary of results

Patients with R0 status, median survival = 41.6 months. 5 year survival = 37.7%

Patients with the worst R1 status, median survival = 23.4 months. 5 year survival = 20.3%

Full results:

Of 561 patients: included, 112 patients (20.0%) had R0 and 449 patients (80.0%) had R1 resections, including 123 (21.9%) R1 (<=1 mm) and 326 (58.1%) R1 (direct) resections. A total of 438 (85.9%) received adjuvant therapy. With R0, R1 (<1 mm), and R1 (direct) status the median survival times and 5-year survival rates were 41.6, 27.5, and 23.4 months; and 37.7%, 30.1%, and 20.3%, respectively (P< 0.0001).

Abstract of article

http://journals.lww.com/annalsofsurgery/Abstract/publishahead/Pancreatic_Cancer_Surgery__The_New_R_status.96727.aspx

I hope this helps some folks!

W&M xx

[Ruthus]

That is very interesting and positive W&M. Thanks as always for your research.

Ruth

[Didge]

Ruth, please don't apologise for mentioning the Prof's name. It has been mentioned so many times here and often not edited out as he was the only doctor performing nanoknife for a long time although I believe there are other places now. It has been important for so many people to know who he is and what he offers and I had assumed that it was not necessary to avoid his name any more - perhaps that he offers private treatment is also an important factor and that he is not 'just' the consultant who the patient has been referred to at their local specialist hospital. I would have thought it might be a good idea to simply ask him if he minds his name and treatment being discussed here but that is not for me to decide! I hope you don't fret about treatment for the time being until you have been to Germany and hopefully things might become clearer. You can always let off steam here if you need to! x

[Ruthus]

Thanks Didge

Just to inform others who maybe interested. I am aware that nanoknife has started to be given on the NHS in Leeds and Newcastle but they are selective in who they will accept for treatment.

[Ruthus]

I will keep this post brief, but just wanted to update people as it is likely I won't be posting for a while. Following the nano knife consultation last week and being found suitable, I also had a consultation at a German hospital yesterday. The view is that my SMA has 180 degree involvement and no signs of infiltration. A repeat CT scan was completed and the tumour remains stable with no sign of mets. It is the surgeons view that this is resectable although no guarentee's of course. He stated there is a good chance he could remove it and perform a whipple.

Of course this is absolutely no guarentee. I am booked in for exploratory surgery and whipple resection if possible next Friday 27th May. We have talked about the risks and outcomes etc. We simply feel we have to go for it! This is a window and I am realistic and well aware of possible outcomes. However if I don't pursue this option I would hate to have regrets and what ifs. If resection isn't possible at least I will know I've pursued this avenue.

I feel apprehensive but simply have to go for it! I also feel a sense of sadness at the moment due to Mark's recent update and the fact that there has been the loss of Tracy and Steve this year to this disease. Their three stories gave me hope and were inspirational after I was diagnosed.

Depending on the outcome of surgery I will hopefully be back to update!

Love Ruth x

[sandraW]

Hi Ruth,

You are right to give it a try, also very brave, I wish you all the very very best for a successful operation and a speedy recovery.

The stories of loss are always hard to take but as we all know this is a wicked disease, surgery is definitely the right path if its possible and there are now many long term survivors, fingers crossed you are one of the lucky ones. I will be thinking of you and send you love and strength please update us when you can love sandrax xx

[Dandygal76]

Good luck Ruth... looking forward to seeing you on here again after the operation. I will be thinking of you. x

[WifeampMum]

Hi Ruth, absolutely fantastic news that the surgeon says there's a good chance you can be Whippled! I will be thinking of you next Friday and wishing you an R0. Love W&M xx

[Proud Wife]

Hi Ruth

I have been following your story from day 1 and think you are an exceptionally brave lady! I will be keeping my fingers and toes and everything else for you that surgery will be a success.

Wishing you all the luck in the world and some. Looking forward to hearing from soon!

Lots of love

PW xx

[Didge]

Great news Ruth! Good luck and keep us posted xx

[boa]

Very good news. Hope all goes well next week. Catherine

[PCUK Nurse Jeni]

That was rapid Ruth!

Very best of luck for next Friday!

Hoping that all goes extremely well.

Kind regards,

Jeni, and the nurses.

[Paige]

Hi Ruth,

I just wanted to say I am thinking of you and I hope the surgery went well today. I realise after major surgery it may be a while until you post but I will be looking out for your next update.

Best wishes,

Paige

Xx

[Sueoliver]

Hi Ruth,

I really hope the surgery went well you are inspirational. Hope to hear from you soon when you feel stronger. Thinking of you.

Love Sue x

[Ruthus]

Hello all

My husband is typing this for me

I am delighted to post that I had a successful whipple operation yesterday in Germany. The operation lasted around eight hours. I went straight from recovery to an intermediate ward. My stomach is very sore and I can't move much but have good pain relief.

I have been told by the doctor this morning that my portal was reconstructed and the tumour was just in contact with the SMA. They have been able to remove all my tumour and the lymph nodes.

We need to await pathology results but we are delighted with the outcome so far.

Thanks for your support over the last seven months. There is always hope.

Ruth. Xx

[WifeampMum]

So delighted for you and your family Ruth - I am grinning from ear to ear as I type this.

Wonderful, wonderful news.

Hope they look after you well in Heidelberg and that you get home very soon.

W & M xxx

[sandraW]

Ruth, that's fabulous news, we have all been waiting with bated breath to hear how you were doing. Just try and take it easy while you recover, it will take time, take care love sandrax xx

[Paige]

Ruth,

That is absolutely amazing news, so pleased for you. It does go to show there is always hope. Situations like yours show it is worth the risks, your brave decision absolutely paid off. I wish you a smooth recovery.

Take care,

Paige

Xx

[Didge]

That's wonderful news Ruth. Lots of love x

[boa]

Great news. Wishing you a quick recovery.

[jay]

Fantastic news Ruth, wishing you a speedy recovery from your op, take it easy, glad the pain relief is good,

love Jayne

x

[Dandygal76]

That is great news, it is nice to hear some positives! I wish you a speedy recovery and safe journey back to the UK. x

[Sueoliver]

Wonderful wonderful news take care.

Love Sue xxx

[Proud Wife]

Absolutely thrilled to hear your news Ruth, amazing!! so, so pleased your brave decision paid off.

Wishing you a very speedy recovery and an early return to the UK. Please ask your husband to keep us updated on your progress!

Lots of love

PW xx

[Didge]

Don't forget to make sure they keep some tumour for testing at some stage! x