Newly Diagnosed

[Elaine123]

Hi everyone my 67yr old husband was diagnosed two weeks ago with PC with liver mets.He was diagnosed because of jaundice which steadily became worse over a two week period until we became so worried that we attended the A&E department of our local hospital . He was admitted that day and had an endescope next day which led to a diagnosis of PC and had a stent inserted to bring down his level of jaundice. We were told that his results would be sent to the pancreatic unit of another hospital who would then discuss any treatment options which could go ahead after the jaundice levels fell. However seven days later we got a phone call to say that he needed a liver biopsy so that the results could be included in the discussion. He was admitted overnight this week for the biopsy which was then carried out however they discovered a blood clot on his lung which they were unable to treat for 24 hours after the biopsy in case of bleeding at the biopsy site. That is where we are at today and are hoping he commences on blood thinners and will be discharged today. Over and above the shock of being told he had PC we are feeling frightened because we are unsure of what will come out of the discussion and whether he will be able to have treatment and what the ongoing plan will be. I came across this site which has been invaluable to me and has given me a glimmer of hope and knowledge about everything. Thank you everyone.

[Dandygal76]

Elaine... hold onto that hope. If your husband wants to fight this then you need to ride the wave of that hope. When you look at the statistics they are dire but your husband is the right side of the median age for diagnosis. I understand that 10% make it 5 years now and given the mean age of diagnoses is I think 72 there is no reason why your husband should not be in that 10% if he is otherwise healthy. It is such a shocking diagnosis and my heart goes out to you. It is a really scary time but there are several things you can do right now... 1) Look at clinical trials as you may be able to get Abraxane which is not available on the NHS. There are NHS funded trials if you have no money - this bit will probably get deleted and I will get told off but call the LOC (Harley Street) for an outside NHS opinion if you can afford the £400 consultation. They just seem to have access to some more forward thinking resources. This is not PCUK endorsed advice, it is my own personal experience (and that of others) 2) Speak to about the nanoknife - no firm scientific evidence coming through but anecdotally I see people doing really well (they will ablate the liver lesions as well). This will cost you around £24k though if you nano and ablate.

If there is enough biopsy then you may want to call London. It is the only place in the UK I have found who will do Genomic testing on the tumour. This is about £1500. However, from what I understand from research is that up to 5% of tumours are genetic and can be treated differently.

Some forms of this cancer though are just nasty and so it is a very personal decision whether to invest funds.

I am an avid PC crusade fighter and my advice is completely biased towards that approach. There is much yin to my yang on here that will hopefully come through from my forum friends. This is a very personal journey (sorry Mo for using that word) and we all have very bitter sweet takes on it all. x

[Ruthus]

Welcome Elaine

I'm so sorry to hear about your husbands diagnosis. I speak as a sufferer from PC (diagnosed November 2015). It's such a huge shock for all the family. It took me some time to process the diagnosis but over the past year I would say myself and my family have reached a new level of normal. I'm lucky to be able to be active and do many things I would normally do in life. I am sure you will find this site invaluable for support and advice. After I was initially diagnosed I looked on the internet and was terrified with what I read. It's been a real roller coaster year for me but if you read my forum thread "mum of 42 diagnosed with inoperable PC" you will see there is hope. You will also find this in reading other stories on the site too.

Dandygal has given some very helpful pointers in her reply.

Love Ruth xx

[Dandygal76]

I would also like to add.. that my advice is not about that you will not get a great service on the NHS. You may be near a pancreatic cancer specialist centre that are brilliant and really forward thinking. The thing I find empowers people though is to gain as much knowledge as you can early on (including the option of palliative or no treatment) and this means perhaps looking at the private consultations and doing your own research. What approach you take to this really does differ from case to case. But with increased knowledge you will feel so much more empowered in your decision making. x

[Veema]

Sorry to hear of your husband's diagnosis, it's a scary time. We had a good couple of years and my husband tolerated chemo very well.

Lots of luck with it...and we're all here for you.

Vx

[WifeampMum]

Welcome from me too Elaine but I'm very sorry to hear about your husband's diagnosis. As you've already discovered, this forum is a great resource for finding out stuff about PC, and the people here are lovely too, so you've come to the right place!

I do hope that you get your husband home tonight and that you get a good treatment plan in place very soon.

W&M xx

[Elaine123]

Thank you to everyone for their kind replies it's comforting being in touch with people who are sadly fighting the same battle as Pete and I are right now. He was discharged last night and has to have Fragmin injections one a day for 6 months. We were told he was being discharged at 12 and it was after 6 pm before the pharmacy sent up the injections and medication.....he was feeling so miserable and looked so poorly I think partly at the news that he had something else to cope with. By the time he was finally let go plus the one hour journey home he was exhausted. Once again thank you for your kind replies.

[Guest]

Hi Elaine,

Welcome. So sorry you and Pete are having to cope with the devastating news. We often say that this is a "roller coaster" because it is so unpredictable and completely unique to the individual. Please don't be too alarmed about Pete's exhaustion - its a huge thing to have to compute and hospitals are very noisy, disruptive and tiring so being at home having some rest is bound to help.

I am sure you and the family are still in shock and trying to comprehend what this diagnosis means for you all. It is true that PC is currently a life limiting disease, but all our lives are limited and no one can say where that limit is! There are some fantastic survival stories (Ruth is an inspiration) on here to give you hope and encouragement. The younger and fitter someone is at the outset makes a difference as does keeping up good nutrition during chemo. Believe it or not, 67 is still young in todays reckoning so you already have a good starting point. Surgery, intervention radiology and chemo are all possibilities to extend life if he is strong enough and that is what Pete wants.

The urge to research and read everything on the web is very tempting and some would say you should do it but you do need to be a little wary as the internet is not a fully comprehensive resource, anyone can post on it and some people give advice without any medical training in how to interpret the data or knowledge of anyone's medical history. The net and this forum are just two of the many resources available and I would urge you to discuss any questions you have with your GP or hospital consultant in the first instance or contact the nurses on here.

I know you may not want to think about it yet but it is also important to understand what end of life care is, how to access it and what the options are. Not everyone is a suitable candidate for chemo or surgery and even if they are they may feel, as time goes on that it is quality they want not quantity. Knowing what it could be like can go along way to allaying fears.

Lastly, do contact Macmillan finance to find out what benefits you can hook into straight away. Whatever happens you are going to be spending time at hospitals and caring for Pete when he is having a bad day. Pete being 67 is entitled to full rate attendance allowance from the date of claim, or diagnosis if Macmillan do it (£82.30) and you may also be entitled to a carers allowance if you are under 65, the rate for carers allowance may vary but neither the attendance allowance nor the lower rate carers allowance, is means tested so every reason to claim. Macmillan will do all the paperwork for you and the hospital specialist nurse or GP will send the entitlement form DS1500 direct to them in most cases.

There is a great deal to take in at this stage but you can come back to these posts when you feel like it. I hope that you and Pete are able to get some rest. I will be thinking of you as will all those on the forum and we will be here in the wings if and when you need us.

Much love, Marmalade xx

[Elaine123]

Thank you so much Marmalade your post put a few things into perspective for me , I am finding the forum a fantastic help because at the minute I find that well meaning others are unaware of what a diagnosis means for Pete and I can nip on here to find real support . Thank you so much. X

[Guest]

Hi Elaine, so pleased you finding being with us helpful. Only when it happens to you do you understand how important it is to have a safe and understanding place to escape to or seek comfort in and i hope you feel that you can share the peaks and troughs of your story here in confidence.

Much love

M x

[Elaine123]

Hi everyone the MDT meeting to discuss Pete was today and we got a phone call to say that his liver biopsy was cancerous and that he would get an appointment to discuss chemo with the oncologist within next three weeks. As you can imagine this immediately dumped him further down . In the past three weeks he has had a diagnosis of pancreatic cancer then the next week a blood clot on the lung and now cancer in his liver. He has been very quiet since the phone call and lying down for a sleep. I just feel so scared that the more things that are piled onto him may affect his determination to fight this. I know you all understand my fears. Thank to this forum for allowing me an outlet for my worries and fears.

Elaine

[Elaine123]

Hi Elaine, the hardest thing in the world is to accept a life limiting prognosis.

The instinct is to fight but sometimes fighting is not the answer… You will need a little time to let things sink in, both have a good cry or two or three and gently talk about where you go from here. The oncologist can talk about what if anything he can do but you can also chat to the GP about possibilities and referral to the palliative care team or local hospice, they are experts in this and don't just write you off. They can help with talking to Pete about the diagnosis, his feelings, address his questions and yours in a non medical situation and so on and advise on symptom control even if that involves chemo and the side effects as well as diet. There are options to extend life as far as possible but there are also options that are all about comfort and pain free quality of life. This is really big so don't expect to be able to make snap decisions.

Pete has this terrible disease so he will feel exhausted, depressed (he can have something for that) pain maybe and a myriad of other symptoms so he will want to sleep and may not want to talk about it for a while. It makes it very hard for you which is why we are all here. Louis and I agreed to talk about it once, a few days after the diagnosis take all the hard decisions and then not talk about it again.

Please don't think that I am being dismissive, truly I'm not. I feel the pain with you, all I can say is stay close and rest and hug and comfort each other. And keep posting, anything that makes you feel better.

Marmalade xx

Marmalade

Posts: 332

Joined: Tue Mar 22, 2016 7:30 pm

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[Elaine123]

Postby Veema » Thu Dec 15, 2016 7:04 pm

I think you need to sit down with the oncologist and find out what, if any, life extension chemo will give. In our case, I think it gave us a year or so. Nige died just under 2 years from diagnosis, but it was 9 months since we were told it had spread outside of the pancreas and just a very short time from when it had spread to his lungs, liver and abdominal wall. Having said that, there are those on here with mets who's disease is being kept at bay with treatment.

I totally agree with Marmalade regarding the palliative care team...we weren't offered this until right at the end and it helped greatly, but it could have helped a whole lot more if we'd asked for it or been offered it earlier. You will also be entitled to benefits dependent on his age (sorry, can't remember if you've mentioned in your other thread how old he is)...we could have had PIP payments for most of the time, but we only found out about it at the end...things like a blue badge too...you might not feel like you need one, but it does help to have free accessible parking when you attend appointments and such. Our hospice offered alternative therapies, massage, reflexology etc, but it was too late for us.

Lots of love and strength...its bloody awful I know. This is the first christmas in two years\az we are facing without a new diagnosis...just facing it without Nige.

[Elaine123]

Hi Elaine, I am not going to go over too much old ground that I have already provided in an avalanche on your previous thread but all is not hopeless. I recall your husband being I think 67 and he could respond very well to treatment or not - you do not know until you try and if you want to try then you have to hold onto that hope that your hubby will be lucky. My dad was diagnosed with mets to his liver and his bone in January this year and we are looking forward to a nice Christmas right now around his treatment and we never thought we would be where we are today - he was told 6 months.

The main thing I say to people in your situation is don't look into the abyss of the unknown. If there is ever a time you need to be grounded in your decision making it is now (easier said than done I know).

It is 'life limiting' but it is not hopeless. A very stupidly small percentage recover, 10% I am told can make it 5 years and things are improving. There are positive stories out there. So yes, the consideration of no treatment / palliative treatment is a big and legitimate option but if your husband is not ready for that then fighting back and trying to stick two fingers up at is maybe a less less likely outcome but it is still a legitimate option and one we are, with my 64 year old dad, pursuing with a good quality of life right now.

It may feel like it right now but you are not powerless and you have choices. It is just a steep learning curve to try and make the most informed decisions around this.

xxx

xx

Dandygal76

[Elaine123]

Thank you to everyone for the very welcome replies to my post.....it helps so much to speak to people who totally understand this terrible illness and are willing to share their story.

Elaine

X

[sandraW]

Hi Elaine,

We do all understand as we have been, or are going through just what you are going through now.

We always used to say it took us 24 - 48 hours to get over bad news, we used to retreat, lick our wounds then just continue, its all you can do.

My husband Trevor was lucky to get surgery, but 3 months later the cancer was back in his Liver he had 19 months from his op, and on the whole he had 19 good months.

His cancer was in the tail of his Pancreas originally, he had 19 rounds of chemo mainly Folfirinox he tolerated the chemo well, just suffering with tiredness.

We had 5 fabulous months chemo free in the summer of 2014 when we had 2 weeks in Gran Canaria, took our grandson to London and our granddaughters to Disneyland Paris, memories that we would not have had without treatment, I am sure.

Trevor's cancer was a particularly aggressive form and when he could no longer tolerate treatment he passed away reasonably quickly, he was lucky in the respect he didn't loose lots of weight and was only unwell for the last 6 weeks of his life deteriorating a bit more each day until the end.

If your husband is well enough to be offered treatment, which it sounds as though he is, it will depend on how he tolerates the treatment, as to his quality of life, but where there is life, there is always hope and some have and are continuing to live good quality lives whilst continuing with treatment. I hope it all goes well for you both, take care sandrax xx

[Elaine123]

Hi everyone it has been a roller coaster day. First Pete got a call from the Hospital to say there had been a cancellation and instead of waiting he can see the consultant tomorrow on the outcome MDT. He was really upbeat about this and looking forward to the meeting. A short time after the specialist nurse called to say she had heard he was going tomorrow , she said that the consultant is a very straight talker and spares no details and that he would probably tell Pete he has 3-6 months left so if Pete doesn't want to hear any details he can ask not to be told them. Too late she had already said it and he was devastated as no one had actually came out and said that to him. Now he is questioning if it is worth going through chemo if he only has months left. Can anyone advise me on this meeting so we can be prepared for it. As I said it has been an up and down day for Pete , I couldn't believe the change that came over him.....a hopeless empty look. Hope everyone is doing good today and coping as best they can.

[Veema]

She shouldn't have said that.

Go to the meeting...you are now prepared for the worst case scenario and see what the consultant says. Our oncologist never gave us any timescales at all, it was only when I asked the hospice nurse right at the end did she give any indication and she was miles out anyway.

I think that once mets are discovered, then it's just palliative treatment to keep it at bay for as long as possible. There are many on this forum living a reasonably active life with liver mets...its not unheard of. Having said that, as soon as it spread to my husband's liver, it also spread to the lining of his abdomen and his liver stopped functioning properly and he developed a massive ascites (fluid in the peritoneal space), it was uncomfortable and caused the sepsis at the end.

Hopefully he'll be offered some chemo and that will give you some additional quality time.

Good luck

Vx

[Guest]

Hi Elaine,

What a very ill considered nurse! I am amazed she is in this job she is so crass.

No one can guess what the consultant is going to say because they haven't got the radiology report or the minutes of the MDT.

It is a distressing situation, and there is no easy way to tell someone this news. We don't know this consultant but he/she is not setting out to frighten or upset you or your husband, why would they? They do however have a duty to inform you of the extent of what they have found and what they can or will do next if you want to know... I suggest that if Pete really doesn't want to know you make it clear at the outset and let Pete say he is happy for them to tell you instead. I think someone needs to know if only so that you can explain to Pete once he has come to terms with the shock.

We all have to face the prognosis at some point and there are many on here who have wished that the doctors had been more open with them at the outset! The positives that we look to take away from the post biopsy consultation are that once you know the worst case scenario you can then talk about the possibilities. Sadly, it is usually the oncologist who has to address the issue of life expectancy because most people want to know how long they have got. They will tell you what you have read on here, there are many variables and no one can say for sure but the statistics for people with similar issues to Pete's are that they averagely live XXXX long.

One of the questions the consultant will be able to answer is Pete's is it worth having Chemo? Most think it is worth it because even though PC can't be cured currently, it can be managed in some cases, treatment trials are available for those who are fit enough, want to extend life and are willing to take a chance on a trial drug or procedure and, chemo can be designed to help manage pain and other symptoms and give better quality as well as quantity of life. It can be stopped at any point so there is very little to lose really. He will also know what is available privately if you ask. For those who want to go on there are options!

My husband decided not to have chemo as he was already very ill and he found trips to hospital distressing and exhausting, he was also 83 and had multiple other complex health issues. My thread "Our journey without chemo" is a diary of our story. It's not gory and may help allay some of his/your fears. Not having treatment is a perfectly valid option and is not in any way defeatist.

No two cases are the same but I think you can only tell him that listening to the consultant will not make his situation worse and may possibly make it a little better, or easier to bear. I think in the end Pete will want to know more about what can and can't be done and will want to make sure things are in order for you if he can, but like most chaps he will not want to keep talking about it! He can have some really useful meds to help with his mood whatever decision he makes and you and his GP should encourage him. He does not have to bear his burden without help.

Keep posting as there are those with huge experience of both scenarios on here and will be able to help and support you.

I wish you well and will be thinking of you and praying for you and your family

M xxxx

[Elaine123]

Thank you so much for replies...marmalade I have taken on board what you said and will now go into the meeting today knowing that what the outcome is will help us to understand and manage Petes future care. Thank you

Elaine

X

[Guest]

Hi Elaine,

I hope things were not as bad as you were fearing today, that you are ok and that Pete found the consultation bearable.

M xx

[Elaine123]

Good morning Marmalade.

I didn't post last night as there was so much going on in my head that I decided to work through that and then get up today to start down the long twisty road again that has become our life.

My son Craig and I felt we gained a lot of info that we needed to know. From Pete's point of view it was a shambles and a harrowing experience. After the phone call from the specialist nurse yesterday he has retreated into his shell and is unable to get over the stark way she gave him the 3-6 months news. The upshot was by the time we got shown into the consultant he was wound up like a spring and launched right into " I don't want to hear about anything except if there is any treatment you can give me". I think the forceful way he came across took the oncologist by surprise and it then took him quite some time to get back on track.

He then went over the lead up of events up to where we are at today. He said Pete will be placed on a dual therapy of gemcitabine and abraxane and this will start early in the new year as there is still some jaundice in his body. He then went onto tell us that the aim of chemo is to give him extra time and give him a good quality of life to enjoy it. He then stressed that chemo can give him 3-6 months extra but the hope is they can shrink it or keep it stable which will give him longer. We then met the liaison nurse who we can contact at any time. There wasn't any scope to ask questions as Pete just wanted out of there as fast as was possible. He said that he is going to ask that if he gives permission then they can speak further to Craig and I.

The chemo depends on whether Pete's weight loss can be halted and expressed the importance of being in good physical shape to tolerate the treatment. I feel that if the nurse had not pre-empted the doctor giving him the news that it would have been less of a shock yesterday as the oncologist had an excellent manner the way he explained things. I just feel this is the second time that Pete has had to cope with news just being thrust on him without any thought to it.

The initial news was given to him by a Dr coming into his room at 8 am and saying you have pancreatic cancer and mets to your liver therefore it is inoperable. I will speak with you and your family at visiting time ( 2.30pm ). Pete then phoned me with the news and Craig and I went up straight away after an arduous journey in shock and disbelief. I just feel it is so cruel to give anyone that kind of news in such a callous manner.

I am sorry this is so long winded and thank you for listening as I am fully aware that you are working through your own loss and that everyone on here are fighting the same battle. Thank you.

Elaine

X

[Guest]

Hi Elaine,

Well done all of you!

Be as long or short winded as you like. Louis was cross with the oncologist too, because he was late and Louis was ill and exhausted. My doctor daughter tells me they get all sorts of reactions and who knows, maybe he tempered his usual brisk manner because he could tell Pete was agitated. I'm so glad you felt you got something out of it.

I think Pete probably did too, he is just coming to terms with things in a different way and at his own speed.

I think it would be really helpful for you to get the GP to put you in touch with the local hospice or palliative care team so that they can give some support to Pete and provide a very experienced ear for him as well as some practical information for you and Craig.

Having said all that, there were times when Louis and I had to be straight with each other, mainly at the beginning, where you are now in fact. I had to tell him once that although I understood his shock, exhaustion, pain and fear it did not give him licence to take it out on me, that my life was not going to be a picnic either! It seemed to work.

I think Pete needs a bit of peace, good pain control and as much normality as possible for a few days. If he is not ready to talk about it then don't.

In the meantime, give yourself a little break too, be kind to yourself, make sure you see your friends and take some exercise, it's important to pace yourself, not take on more than you need to and let others take up the slack. It will be good training for them! You will find that things that were incredibly important at one point are now not important at all and can wait.

Much love to you both,

M xx

[Elaine123]

T/C last night to say that the hospital will see Pete on Wed 28th Dec and will be given chemo on the 29th. He is over the moon because at the meeting the other day he was told that the soonest he could start chemo was early Jan 2017. Guess this is us beginning a new phase which may or may not be successful . Everything that happens with this illness seems to involve either a waiting game or uncertainty of the outcome of decisions that are made.

Elaine

X

[Justamo]

Morning Elaine, I typed a reply last night at about midnight and this morning it has vanished. It was about Pete gaining weight before his chemo. What worked for my Peter was cream, creons and cheese. Mascarpone ice cream, double cream in with pasta sauces, mashed potatoes, whipped cream with scones, full fat milk with milk powder in it, everything wrapped in pastry; you can really go to town on it. The lovely nurses on our helpline have a leaflet they will send you but it might not arrive in time with Christmas post, so Google 'gain weight for ideas.

I even resorted to Instant Whip - slips down easily and not heavy to eat. Creons help too. Little and often, and you can also get procal powders which I've heard can be added to food but we haven't used them.

Peter deals with his diagnosis by ignoring it. He is talking blithely about playing golf next Summer, and as far as he is concerned PC is an annoyance rather than a terminal illness. He can deal with it any way he likes if it works for him and he's happy.

I you all enjoy Christmas and have a peaceful time.

Love, Mo