Overwhelmed - husband diagnosed, in hospital - decisions.

[Larrybee]

I'm new to this, as I guess most people are when faced with the diagnosis of a loved one.

(Horribly coincidentally we lost our brother-in-law to pancreatic cancer two years ago - not a blood relative of my husband.) After 18 months back pain, then loss of appetite, lethargy and finally jaundice, he was admitted to hospital 10 days ago. Attempts to insert stent via endoscope have failed on two occasions, so keyhole abdominal procedure performed to release bile. Stent not inserted at this point as consultant wants to do an endescopic ultrasound (sorry if I get my medical terms muddled) to see if any possibility of surgery to remove the tumour which is about four and a half cms - as shown by CT scan. We were told today that this procedure will take place quickly and when results are known and put before a surgeon we will be told if surgery might be an option.

Our awful dilemma is that he is so weak (71 yrs old and previously very active prior to heart surgery and small stroke several years ago), he's weighing just 8 and a half stone and not eating much. IF we are offered surgery, should he take it - he doesn't want to spend several months recuperating from a risky procedure with no promise of a positive outcome - says he doesn't want to be 'pulled around'. We both want him home when he is stabilised so that we can enjoy some time together - consultant says they will insert stent if op not possible or not wanted, and possibly offer chemo.

We are both devastated - is there any hope that surgery might offer him longer - and what would the quality of that time be as opposed to coming home with eventual palliative care.

Sorry I've rambled on a bit, but am feeling so lost in this.

[J_T]

Hello Larrybee and welcome to the forum.

I'm so sorry to hear of your husband's diagnosis, most of us on here have been there one way or another.

Sorry I'm not clued enough to offer any real advice except that I believe the Whipple operation is pretty intense and long and recovery CAN be long and arduous, though I've no experience.

You will get good advice from the specialist nurses here, Jeni and Dianne and you can email or phone them during the week, they really are two special people.

Good luck with your appointments and the treatment whichever way you choose to go.

Best wishes

Julia x

Edited February 10, 2014 by J_T

[nikkis]

Hi there,

Welcome to the forum, but so sorry to hear that you and your husband are going through this. With this disease there are always such difficult decisions to make. My husband had surgery last May, and probably is still suffering as a result of this. But there were people we met who had the same op, in their 70's, who made a much better recovery, (my husband is now 50). I would advise not trying to make any decisions until you see the surgeon, who should give you some good advice, and it is always a good idea to talk to the nurses here.

Best wishes,

Nikki

[Carole McGregor]

Hi Larrybee - this is just awful isn't it ?

All I would say its that it seems to me that surgery is only ever offered if there seems to be a really good chance of success so I would certainly wait until you have heard from the surgeon. I would add that you should discuss with him or her, what would happen if the surgery is abandoned as this sometimes happens. When the Whipples procedure was attempted for my husband, it was found that the cancer had already spread to his liver (despite clear scans). Without our knowledge or consent, surgeon decided not to attempt to remove tumour but still did by pass of bile duct and stomach - major surgery that Clive never really recovered from and I know that if he had had the choice, he would have preferred not to have it. It really affected his ability to make the most of the little time he then had left. You need to discuss all the pros and cons to decide what is right for you and your husband.

I wish you all the best. These are the hardest decisions anyone could face.

Carole xxxx

[cestrian]

Welcome Larrybee

Surgical intervention was never an option for me thanks to the customary delay in diagnosis and I also have lung and liver Mets. I think the decision on surgery is a very difficult one and must depend on so many factors, not least the patient's underlying health problems. It is a major operation and not one to be undertaken lightly so I think you'll need to take all the advice that is available.

In practical terms the quality of life post diagnosis can vary enormously and can be improved by pain relief, chemo and other treatments. Again a difficult decision that is very individual and personal. I've been lucky in having no side effects so am happy to continue with chemo for as long as I am able and it is doing some good, CD scan tomorrow so we'll soon see how my lung lesion is behaving!!

Very best of luck in your quest for the right course of action.

Love and Peace

Mike

[Larrybee]

Just wanted to thank all of you who responded to my message with so much wise advice. It's an enormous comfort to be able to share in this way. Thank you again.

[InfoForMum]

Hi Larrybee,

Talking to the nurses saved my sanity (number on the home page of the site). I come here for great patient and carer perspective on EVERYTHING and the neverending stream of kind support the PCUK family offers, but when you're in the middle of these post diagnosis dilemas and set adrift between each 20minute slot with consultants, I can't recommend speaking to them enough.

Until you know the low down on the size, position and vessel involvement for the tumour all you can do is arm yourself with the general pros and cons of different options. Then it's all down to what makes sense for you and he.

In two minds about mentioning this, because it's only available privately (costs about £13k to fund yourself) and I have no idea if it would be an option for you, but there is something called Nanoknife or Irreversible Electroporation (IRE) out there as another palliative option. It's a far smaller procedure than a whipple and doesn't involve cutting. It has a go at tumours and mets laporascopically using electricity delivered via probes placed around them. It does nothing to control mets brewing elsewhere, but has shown some good results controlling the main growths. (I wrote more from my carers perspective here http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1303&start=15#p12154).

It isn't a cure, Whipple is the only thing that is curative for some people, but it's one of only a few promising new palliative options that have along. Just to forewarn you, don't expect your docs to be behind you with that option. Few know much about it and they are all bound by their board to follow standard, well proven treatment plans.

If I've muddied the waters dangling something you can't have in front of you I'm so sorry. I would hate to find out too late about options, even if they are out of reach or won't work for Mum and sometimes i'm guilty of assuming everyone thinks the same.

Take good care of yourself.

Sarah

[Cathy]

Hi Larrybee

Welcome. As you have already seen, you will get a lot of good advice and support from the people using this forum. We have all become unwilling "experts" to some extent.

I don't have experience of the whipples but I do know only a small % of people with PC are "lucky" enough to be offered one due to the sneaky nature of the disease, involving major blood vessels or spreading before symptoms are diagnosed. As the others say, wait to hear what your surgeon has to say first. Is your husband using creons (enzyme pills to help digesting food). These may help with weightloss as might some high calorific supplements your GP could prescribe. In the meantime try adding cream to stuff to increase calories.

All the very best

Cathy xx

[PCUK Nurse Dianne]

Hi Larrybee,

Welcome to the forum. I am sorry, as you say that you are in need of finding solace in a place such as this. As I am sure you have already discovered it is a very friendly and supportive place, and I am sure you will soon find that you have been enveloped into this 'lovely forum family'. Please do feel free to either email Jeni and I (support nurses on support@pancreaticcancer.org.uk) or phone (020 3535 70990) if we can be of any help to you at all. I can give you some advice about surgery and options.

Sarah has given some very indepth information about Nanoknife, however it is recommended that patients are undergoing chemotherapy before having 'Nanoknife treatment' and normally it is ideal if the tumour is < 4cms for Nanoknife treatment.

Please do feel free to be in contact if we can help you at all.

Kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Support Team

[InfoForMum]

Dianne is quite right Larrybee. The professor doing this sets his limit at 5cm, but as she said <4cm is better. Chemo first is to go after any unseen mets floating about (as Nanoknife doesn't tackle that) and knock the health of the tumour as much as poss. Sorry to have left that information out. A lesson learned in jumping in in future.

I'm wishing you the very best and hope you get what you need to make a choice that you are both happy with.

Sarah

X

[Didge]

Hi Larrybee. So sorry you are in this position that we are all so familiar with from whichever angle we are coming from! I would echo others in that you cannot really make decisions until you know what you are dealing with. There is no 'answer' as to whether surgery, if an option would be 'worth it'. My boyfriend had tail of pancreas surgery and had not post op problems at all! One thing I would say is to make sure, if possible, that your husband gets treated at one of the specialist pancreatic cancer centres which you can find on this website. Mine had a brilliant surgeon and I think others would not even have attempted surgery. Good luck and we are all with you in spirit x

[Larrybee]

Thanks again for supportive and helpful advice. Cathy - yes, he is taking Creon. He has now been in hospital for two weeks and undergone 3 CAT scans, 2 endoscopies and had a bag connected through his abdomen to collect bile. We believe that the endescopic ultrasound will take place probably tomorrow or Friday, after which there will be a MDT meeting which will involve a surgeon at a specialist hospital for his opinion. He is very weak now and it's so hard to keep positive in this situation, but I am doing my best for him.

Have been promised a visit on the ward tomorrow from a nurse specialist, which I hope will be helpful to us both. Meanwhile, we await the outcome of this next procedure and will then make any decisions we have to based on the best advice from the medics and how he himself feels.

Thank you once again, all of you. It's a comfort to come home from the hospital and be able to rattle off my thoughts like this; I will no doubt make contact with your specialist nurses on this site - it's good to know that there is someone there to talk to who knows about this condition which is so new to us.

[PCUK Nurse Jeni]

Hi All,

Just a note to say that all pancreatic surgery is carried out at specialist centres now, so Larrybee, if he is operable, he will be referred there.

KR,

Jeni.

[Larrybee]

Decision made for us today by Consultant that my husband will not be suitable for surgery - too weak, much weight loss plus his cardiac history. In some ways I am glad the decision did not have to be ours. Now we are awaiting the stent to be inserted via his abdomen, in place of the bag which is draining his bile and to get things in place to prepare for him to come home. Seeing specialist palliative care nurse tomorrow. I have multiple sclerosis myself, although I do well and am hoping that there will be good support. For so many years, since I had to retire, I have volunteered for the MS Society - but think this has been a wake up call to me in terms of how little research has been done into pancreatic cancer compared to the more well known medical conditions.

Taking a deep breath and preparing for what I know is going to be a difficult time ahead but also determined to make the most of it together.

[EmmaR]

Oh Larrybee ,

It's the most awful time but please know we are here for you and just be postive and and strong for you man and take good care of yourself and I hope you have support from family or friends .

EmmaR x

[Cathy]

Hi Larrybee,

You sound very brave and I hope your hubby is able to come home soon and that you can enjoy some great quality time together and he is comfortable. Hopefully your palliative care nurse will be as good as ours was (still is, she is visiting me tomorrow). I'm sure s/he will be. It takes a special kind of person to do that job.

As Emma said, we are here for you when you need us.

I'm sure you will stay strong for your man but be kind to yourself and allow yourself space and time to have a wobble when you need one.

What is your husband's name?

Cathy

[Larrybee]

Hi Cathy and Emma - Thank you so much for your support - it means a lot. My husband's name is John. Yesterday I bought a Valentine's card and left it with him to write something in as he was distressed that we weren't doing our usual special Valentine evening. What he wrote (with very wobbly writing) I will always treasure.

Today they were going to remove his bile bag and insert the stent, so he went all day nil by mouth and have just heard that an emergency prevented the procedure taking place, so will be done on Monday as they want the whole 'team' to be there. He's quite philosophical about it (probably the anti-depressant!). Saw the specialist nurse today who was very sensitive and helpful. Hope to have him home middle of next week and am now about to find a good reclining chair for him so he can sit comfortably in our conservatory and watch the birds.

Have been told that we will be seen in outpatients a couple of weeks after he comes home to discuss possibility of chemo; although the nurse said that unless he can put on some weight she thinks he won't be a candidate for this. One day at a time is our motto now.

[Cathy]

Ahh Larrybee

Keep that card!! Let us hope there will be many more. I've got my Jonathan's card up from last year. I remember well us swapping them.. Both in tears with what was written in each. We were a right pair of soppy Hector's.

How annoying about today but hopefully John will be done on Monday and home with you as planned in his new recliner, and hopefully, will start to feel better with the stent in and start putting on weight again.

Everything crossed for you both

Cathy xxx

[J_T]

I still have my last birthday card from Ray up in my bedroom.It was 10 days before he died, also with very wobbly writing. I'm going to frame it. I shed a tear every time I read it.

Hope Johns procedure goes well and he gets home soon.

Julia x

[InfoForMum]

Ladies I'm so sorry this is so hard on you all. Larrybee, I was really struck by that post. You are being so strong and pragmatic. Another example of the enormous well of strength all you ladies seem to draw on when most folk would crumble. Make sure you keep your own strength up too and take time for yourself if you can.

Sarah

XXX

[Larrybee]

Well, it's not been the best of weeks. On Monday John went down to have the bile bag removed and the stent inserted via his abdomen (as couldn't do it with the endoscopy thought tried twice). Sadly, they still couldn't manage to insert the stent - so he still has his bag and is visibly weaker and very low in himself. Doctors are going to have another try at inserting stent via abdomen within the next few days and we have been told that if this is not successful they will perform a bypass of the blockage in the bile duct. Am praying that they will be successful this time, so that he doesn't have to undergo any more procedures and I can get him back home. Have been out and bought him an riser/recliner armchair so that he can sit comfortably in the conservatory and watch his birds in the garden. Our dog Molly can't quite make out why her favourite old sofa has gone and she's not allowed on the new chair! Keep telling her he will be home soon - it's like having a child!

Fingers crossed for success with this next attempt, but would be interested to hear from anyone who can tell me more about the bypass procedure.

Once again, thank you all for the great support you give - so many of us going through this or having gone through it and it's so good to share with people who understand.

[Guest]

Hi,

Sorry to read the dilemma you are in. I always thought having a choice would be easier than not having a choice, but reading your post, I would say not. What a horrible, traumatic decision to have to make. Do you trust in the doctors to offer you good advice? My dad has recently been diagnosed and they say his pancreas is inoperable as it is advanced and spread. I hope you are getting better medical care from nurses, than what we have had so far.

Leila x

[Guest]

Sorry, just read all the posts. If these are the right words, I hope you have some comfort in fact the decision was made for you. I think I would always be questioning whether I did right or wrong. I hope your husband is home soon, I'm sure he will get lots of love from molly, they know when we are poorly and look after us.

Best wishes

Leila x

[PCUK Nurse Jeni]

Hi Larrybee,

Sorry to hear what John is going through right now. Hopefully, the next attempt will go well, and they will manage to get the stent in. Have they said the reasons why they are unable to insert it?

You can read more about the bypass surgery here, on page 5:

http://www.pancreaticcancer.org.uk/media/177669/pcuk_surgical_and_other_interventional_procedures_for_sympton_control_factsheet_print.pdf

I hope Molly and John are reunited soon - she is probably confused too, and missing her master, no doubt.

Kind regards,

Jeni, Support Team.

[Cathy]

Hi Larrybee

Absolutely everything crossed for you. Hope John is home soon to test out his new chair and chat to Molly.

Loads of love

Cathy xx