A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
NorthYorkshire
Posts: 4
Joined: Sun Aug 21, 2016 7:56 am

Advice Please

Postby NorthYorkshire » Mon Aug 22, 2016 4:58 pm

Thanks for accepting my request to join. Not sure if I'm posting in the correct place, please feel free to move if I'm the wrong forum.

I'm posting on behalf of a wonderful friend (and his equally wonderful wife). He went to docs feeling unwell the very end of June and as of 2 weeks ago was diagnosed with PC. 2 attempts to fit a stent later and he is finally losing the jaundice. he has also been put onto Creon meds. "Something" was showing up on MRI scan on his liver that they were unsure about so they did a liver biopsy.

Friday brought the devastating news that cancer has spread to his liver. Palliative chemo only to be offered. The tumour is 2.5 can in the head of his pancreas, one tumour on his liver measuring 0.5 cm.

I am posting with full consent of this lovely couple both in mid 50's and will give them my access rights if they would like to take over. I'm staggered that the McMillan nurse who delivered this news appears to be throwing in the towel so easily. I appreciate she is acting on the instruction of a consultant from a big hospital in West Yorks but surely there is something to be done or try?

His GP is going to ask for an urgent appt with an oncologist after being told on Friday that he "should hear something in about 2 weeks". 2 weeks is a lifetime when you've been told to put your affairs in order.

Any advice on questions to ask or suggestions re possible treatment/2nd opinions much appreciated. I can't help thinking it's all too soon to give up totally.

I've read this forum a fair bit in the last few weeks and have been moved to tears more than once. Thank you to those of you brave enough to share your stories and thank you to anybody that can offer any advice.

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: Advice Please

Postby PCUK Nurse Jeni » Mon Aug 22, 2016 5:13 pm

Hello NorthYorkshire,

Welcome to the forums, although of course, no one wants to be here in such circumstances.

I am very sorry to hear about your friend and the recent diagnosis he has had - a devastating blow for them as a couple and also their friends and family.

It is good that you are taking on the job of "information finding" for this couple, and I am sure this is a great help to them.

Good news that he has been referred to an oncologist - and although 2 weeks does feel like a long time, this is what would be the normal space of time for an urgent referral.

Chemotherapy is the option where the disease has spread to other organs, as you have described here, the liver. The secondary in the liver is very small, as is the pancreatic tumour. It would be one step at a time, starting with chemo.

I would like to email you separately tomorrow with some other information, and to get a bit more information, as this would be helpful in deciding options.

Kind regards,

Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Marmalade

Re: Advice Please

Postby Marmalade » Mon Aug 22, 2016 6:43 pm

Hello North Yorkshire,

Welcome to the forum. It's very hard to make any really helpful suggestions without all the details but the usual reason people are told that there is only palliative treatment is that the mass is enveloping major blood vessels which would make surgery too risky. They call this inoperable. Sometimes, with chemo the tumour can be reduced to a state where it becomes operable further down the road or there are sometimes options for other types of tumour reduction which I understand is not available on the NHS. Many on here are much more familiar than I with such treatments and I am sure they will be commenting very soon.

I am very surprised that the diagnosis and prognosis has been given by a MacMillan nurse. There must have been a meeting with his consultant and notes from the MDT (multi disciplinary team) with more detail. You will find many many comments on here about the torture of waiting for scans and biopsies and other diagnostic procedures followed by more torture when waiting for results and appointments with specialists. It is the worst part for many.

What I can say is that if there is an approach or treatment or information out there the PC warriors on here will find it and share it.

Creon is not a medication as such it is a digestive enzyme to replace the ones that the pancreas can no longer make. They are very important and there is a lot of mis information on the levels (people usually need far more) to take but the nurses on here are brilliant and will advise. It is often prescribed with Ometprazole or similar to stop excess acid in the gut and your couple should ask the GP about that or speak to the nurses on here.

Your couple are young, the tumours seem small and if they are fit and usually healthy the outlook is more positive than the internet gives us to believe. What is really great is that there are so many wonderful, knowledgeable and properly supportive people on here and I am sure you and your friends will find great comfort and encouragement.

Good luck,

Marmalade x

NorthYorkshire
Posts: 4
Joined: Sun Aug 21, 2016 7:56 am

Re: Advice Please

Postby NorthYorkshire » Mon Aug 22, 2016 10:41 pm

Marmalade - I am truly touched that you have taken the trouble to reply after all that you have been through - thank you.

I've sent a link to my friends for them to read. Thanks to this forum I already knew about Creon before they did as well as clinical trials etc. I didn't know about ometprazole though and will mention this.

This wonderful couple have written a bucket list since Friday's news and are busy trying to organise a festival of music having missed out on a couple due to illness as a way of fund raising for PC UK.

The MDT in west Yorks have reviewed scans etc and also took the biopsy 10 days ago (the tumour was so small it took several attempts to hit the spot so to speak). Results from this was delivered locally by a McMillan nurse. I don't know if the tumour is enveloping blood vessels but I will try and find out.

today's "supportive GP" appointment - they asked about clinical trials and their GP is going to contact the oncologist to ask. There has been no talk of reducing the tumour to operate - just negative talk of palliative chemo.

Please do email with any questions/suggestions - all offers of help greatly appreciated.

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

Re: Advice Please

Postby Wife&Mum » Tue Aug 23, 2016 9:45 am

I too am very sorry to hear about your friend. The diagnosis of inoperable PC is devastating. My husband was in the same position over a year ago.

I suspect that the focus of the discussions on palliative treatment is due to the fact that the cancer has spread to the liver, though as Marmalade has said, some people are deemed inoperable due to blood vessel involvement. The latter was my husband's problem, very fortunately his disease was localised.

It's good that the tumours are relatively small and this will buy your friends time to consider options in addition to chemo (such as radiotherapy, NanoKnife). From my reading I've discovered that some patients have been taken to surgery despite metastasis but it's very rare and I don't think that such resections are considered curative.

I wish your friends the very best as the treatment plan unfolds

W&Mx

NorthYorkshire
Posts: 4
Joined: Sun Aug 21, 2016 7:56 am

Re: Advice Please

Postby NorthYorkshire » Tue Aug 23, 2016 10:06 am

Thanks very much for all your kind words and good wishes.

My friends are struggling with everything at the moment and not in the right place to take on board too much information. To this end, I will leave this be for now and come back to ask any questions if and when they ask me to.

Many thanks again.

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

Re: Advice Please

Postby Ruthus » Thu Aug 25, 2016 12:28 pm

Hello North Yorkshire

I am aware you may not read this soon as have left the forum for the time being. In case you do pop onto the forum I just wanted to add a little information.
I am very sorry your friends are going through this terrible time. It is truly devastating when you are given the news that you have this terrible illness and then told it is incurable and the prognosis is limited.

I would reinterate what others have said in the fact that I am aware of many people who are given the terrible statistics and prognosis and are still alive many months after. I have a friend who was diagnosed in August 2015 and given very little time and after chemotherapy has experienced a good result and is doing well today a year on.

I would encourage your friends discuss current clinical trials with their Oncologist. It could be he is suitable for a clinical trial which would offer medication otherwise not available on the NHS. It is important to consider this prior to commencing other treatment as once other treatment has been commenced it may eliminate the person from enrolling on a clinical trial.

The other point I wanted to make is something you have referred to North Yorkshire in terms of waiting times, and this is an observation which I do think warrants attention and is probably something for the PC nurses. Infact I will copy this and post it on my own thread too. This is the issue of waiting times for suspected pancreatic cancer. I am aware that the waiting times deemed appropriate for cancer tests and diagnosis are 2 weeks and this is seen as acceptable and standard nationally. It took 6 weeks from me becoming jaundice to having the relevant tests, procedures and diagnosis to being sat infront of the Oncologist at the specialist cancer hospital and discussing the treatment plan. It then took a further two weeks for chemotherapy to start. So in total it was 2 months from symptoms starting to chemotherapy starting.

Whilst doing some reading and research I read a well known Professor working in PC in the UK state that pancreatic cancer should be treated as a clinical emergency. That it is not like other cancers which are slower growing and can wait a time before treatment starts. He highlights that pancreatic cancer is faster growing and needs to be acted on quickly. I really think this is an important issue which needs to be addressed. I don't think the standard cancer protocol with regards to waiting times, tests and diagnosis is acceptable where pancreatic cancer is concerned and couldn't agree more that it should be treated as a clinical emergency with fast tracked system in place.

I found it very interesting that when I was lying in the hospital bed last year awaiting test results and diagnosis and had been there for two weeks that during this time my 80 year old father in law had been to his G.P where he was diagnosed as having a very treatable skin cancer. He was referred to the same hospital where I was currently an in patient and given a treatment appointment within one week of him visiting his G.P. It really highlighted to me the difference in care and waiting times. It is fantastic that he received such efficient care with minimal wait and this will be also due to the fact that the treatments are easier to deliver etc but highlighted the fact that such a serious condition as PC can be left. I really do think this is something which needs to change and there needs to be a fast track system in place right from the start if the G.P suspects pancreatic cancer.

I am thinking of you and your friends North Yorkshire
Ruth x

NorthYorkshire
Posts: 4
Joined: Sun Aug 21, 2016 7:56 am

Re: Advice Please

Postby NorthYorkshire » Thu Aug 25, 2016 11:52 pm

Still looking in to see how you're all doing Ruth.

Couldn't agree more re the waiting times, should definitely be a clinical emergency even suspected PC. However my friends GP got on board and rang the oncologist to ask for a soonest appt. and he's been today. Palliative chemo to start 9th Sept - 100% FurryFox :-) See where we go from there.

This brave duo are busy sorting out a music fest, all sorts of prizes donated for the fundraiser already and bands coming forward offering to play. Proud as punch of them both - if the love and support from family and friends could win the day they'd be home and dry.

Many thanks again xx