A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Thu May 12, 2016 10:52 am

Best wishes today for your nanoknife appointment, Ruth.

Jeni.

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Didge » Thu May 12, 2016 1:44 pm

Hope today goes well x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Thu May 12, 2016 4:15 pm

Thanks for the good luck messages. I had a very positive consultation with the Professor (edited by moderator). I will update in more detail later when I have wifi.
Ruth

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri May 13, 2016 11:00 am

We are back from London and the consultation with Professor (edited by moderator). I have to say it was a very smooth process. I went with my daughter. We booked train tickets for Wednesday evening as it was £40 return coming back last night, whereas it would have been £300 if we had gone at commuter time yesterday morning. We managed to get a hotel for £80 which was ideal. It was just off Kensington gardens and about a 15 min tube journey to Baker Street. The Hospital is very easy to find, just a few minutes walk from Baker St underground and in a very nice area. After the consultation we went to Regents park and then had some time in Covent Garden. The sun was shining and it was a lovely day.

We were very impressed with Professor . He was very professional, knowledgeable and also had a nice manner. He made us feel at ease and relaxed. He told us he had looked at my scans over the weekend and he measured the tumour to be small at 2 cm's. This has confused us as we were originally told it was 2cm in November when I was first diagnosed, but when the specialist cancer hospital I am being seen at measured both my starting scan and mid treatment scan at start of April they said it was 3-4 cm on both! We pointed out to them that we were informed it was 2cm in November but they remarked their measuring equipment is probably more reliable but now Prof has measured it at 2cm's we are unsure!! I would much rather hope it is 2 cms!

Prof told us he could see no spread of disease and it was locally advanced. I have to admit I've had some pangs of anxiety since as worked out its 7 weeks since I had my mid treatment scan and have had thoughts of 'what if it's changed'. However my tumour markers are reduced from 390 to 50 so I'm taking this as a positive. He told me I looked very healthy(Of course I know this is no guarantee of outcomes but was nice to hear).

He has completed 120 pancreatic cancer Nanoknife treatments so far and repeated 6. He said a paper is due to come out regarding outcomes. Although not a cure he mentioned statistics of 27 month median survival. He also mentioned new therapies and trials particularly immunotherapy which may show promise.

He also mentioned "know your tumour" profiling which I had actually heard about in America but he told me that this is also being done privately in the UK and I could request my tissue sample is looked at. This is to determine whether there maybe better targeted treatments. He mentioned for example that some drugs used for breast cancer or other cancers maybe effective for PC.

There has been such a lot happening the past few days as the day after I had heard from London I also had an email from the Heidleberg in Germany re second opinion for surgery. We have read that Germany may have a look, and operate when deemed inoperable in other countries. We are flying to Germany on Monday night for a Tuesday Consultation and possibly tests/scans. I discussed this with my NHS Consultant and Prof today. Both have said its good to explore all options. However after discussion with both and my own research I am unsure whether outcomes are that good.

I will ask Germany what the chances of having an RO resection if they felt they could operate. Apparently this gives you best chances of longer remission. If they state R1, this has poorer outlook. I think I have read stats along the lines of 16 month median survival after the whipple (again this could be incorrect). I know that reoccurance is common around 12 months after the whipple. Although at the start of this journey I felt an operation would be the only chance of a prolonged survival I am now questioning this taking into consideration the trauma of surgery, the possibility of complications, recovery from surgery. I am aware that if someone is deemed operable in the UK this is the best option to remove the tumor but in more complex cases like mine with arterial/venous involvement I am uncertain.

Bearing all of this in mind at this current moment in time Nanoknife sounds far more appealing. However I will see what Germany says. I'm feeling anxious though as need to act quickly. Prof advised on Nanoknife ASAP if this is what we choose. He also said it works better whilst having chemo as theory is it can help chemo get into tumour. As I've just had my 9/12 Folfirinox it only leaves 3 more.

I will update after my Consultation in Germany on Tuesday.
Ruth x

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Didge » Fri May 13, 2016 12:52 pm

Ruth this all sounds good although I appreciate your concerns Re surgery although that is still the only way considered possible for cure as far as,i know. If you can afford it I would definitely get the 'know your tumour' profile done. I have have heard of cases, like Prof (edited by moderator) says, where breast cancer chemo has been effective for cases with the right kind of tumour, but yes in America. Good luck with Germany! X

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Fri May 13, 2016 2:37 pm

Hi Ruth,
Wow Ruth that all sounds so positive , it must be difficult to know which decision to make as you say, but perhaps when you hear the results from Germany it will make it easier for you. Its great to hear the the professor thinks you look so well too, and the news about the reduction in tumour markers is also great, look forward to hearing about Germany. Take care sandrax x

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby boa » Fri May 13, 2016 2:53 pm

So pleased to hear this hopeful news. The 'know your tumour' sounds a good idea as Didge says. Good luck with everything.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Fri May 13, 2016 3:56 pm

Ruth, such great news from you on so many fronts - wonderful!!!

All the best for Germany on Tuesday but it sounds like you already have a very good option available with the Prof. His nano knife median survival statistic is v impressive and encouraging.

W&M xx
Last edited by Wife&Mum on Fri May 13, 2016 6:38 pm, edited 1 time in total.

PCUK Nurse Dianne
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Dianne » Fri May 13, 2016 5:37 pm

Dear Ruth,

Thanks for your great post about your potential options and I am sure this is helpful for other forum users too. I trust you do not mind that I have edited the Professor's name out of the posts around this, as it is important that we remember to protect and respect these health professionals on the forum (as in our guidelines).

I wanted to add some comments about surgical outcomes that you have mentioned, really for information of others and any new forum users. Surgery is considered the gold standard for successful removal and treatment of the pancreatic tumour, as we know. For those patients who have an R1 resection +/- positive lymph node involvement, adjuvant (meaning post surgery) chemotherapy is indicated and also may improve outcomes for these patients.
Median survival post Whipple's - I do feel this deserves an explanation of what 'median' actually means, as we are aware that there are many people who use the Support Services who are way past this figure of 16 months. Of course it is important that we aim to keep a sense of hope and inspiration for people affected by this disease as much as is possible. We also do appreciate this is not the situation for many people and sympathise with and consider those who use the forum either as patients or carers who are not in this fortunate situation.

In the context of Whipple's operation, median is the average of many statistics. For example if you are reviewing 500 cases of patients who have had the Whipple's operation, there will be variances of survival, some patients may have limited survival of months (and their demise may not be necessarily due to progressive/recurrent disease, it may be a side effect of disease or other complication) whilst other patients may have statistical survival of 5+ years. The median is all of these statistics added together and the 'middle ground' obtained.

From a perspective of statistics; we are frequently asked about these on our support line services, and will often explain to people that they are numbers, and not always truly reflective of individual circumstances. We often hear from individual patients who are told that statistically they may have a certain prognosis (determined on their individual condition) and they will far outlive that 'statistic'.

I feel your approach is sensible Ruth in that you are seeking expert opinions from several other sources and specialties and this is to be encouraged. No two patients are alike and it is important for everyone to have the capacity to speak to experts who are able to review your individual case and provide information so that you are making an informed decision.

You are also very sensible in taking the approach of considering the best options for yourself, as you highlight yours is complex situation and worth considering all options.

Safe trip to Germany and we look forward to an update. May I thank you also in honestly sharing your experience and giving others the awareness of treatment options.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK Support Team

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri May 13, 2016 6:15 pm

Thank you all for your lovely messages of support and thank you Dianne for the response. Thanks for editing the Professors name. I am usually very careful about not mentioning health professionals names but as his name had been mentioned a few times on the forum I had overlooked this. Apologies!

Also thankyou for being concise regarding what median survival means and statistics. I have read stories where people have outlived the statistics and personally I do not like to focus on statistics as believe everyone is an individual and no one, not even the Consultants can tell someone how long they will survive. When I was initially asked whether I wanted a prognosis my response was no.

I also appreciate that surgery is the gold standard first option. I was referring to my own personal case when considering the possible outcome of surgery for myself when compared to nano knife.

Hope is so important. There are hopefully positive treatments and changes to come to treat this disease.

I will update once I have had the consultation in Germany.
Ruth x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Fri May 13, 2016 7:24 pm

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 ... 96727.aspx

I hope this helps some folks!

W&M xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri May 13, 2016 9:42 pm

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

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Didge » Fri May 13, 2016 9:59 pm

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
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Sat May 14, 2016 10:34 pm

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
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Wed May 18, 2016 6:14 pm

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