New Diagnosis, First Oncologist Meeting tomorrow

[fionaw]

My partner was diagnosed yesterday.. I don't know the stage, the type, the prognosis, anything. The first meeting with the oncologist (at which I believe MacMillan nurse/palliative care is just one of the subject likely to arise) is tomorrow. Can anyone suggest questions they wish they'd asked - my main concern is whether he can be made comfortable, whether he'll ever be able to fly again, what foods might actually be palatable AND maybe good for him, and how on earth we can get him into a comfortable position to sleep.

This is all a bit plain and simple - I've left out all the emotional pain and angst and fear and so forth. Oh, I forgot to say the original consultant said he won't be able to beat it. So it's just a question of how long. Any and all observations, suggestions, etc. very gratefully received.

Oh and of course there's the question of how I parent our 14 year old through this as well. ... sorry if this has all been covered elsewhere, I don't mind being pointed to other threads but I guess we all consider our situation unique even if countless other unlucky souls have been through or are going through virtually the same.

[sandraW]

Hi Fiona,

Welcome to this safe haven, where we will all try to support you on this journey with your partner.

I think the 1st appointment is so very scary, I would suggest you find out how far the disease has progressed and what treatment options are being offered, making sure your partner is prescribed Creon. At least you seem to have got an reasonably quick appointment to see the oncologist which is not always the case we find.

We have wonderful nurses on here who when you get some information together will be able to give you great advice on every aspect of the disease, they are available Monday to Friday and they are so very kind and approachable so if your appointment is finished early enough I would give them a ring I think they finish about 4pm.

Of course you are emotionally wrecked, we all know how that feels, but the are some good treatments available which hopefully will help his symptoms and give him some more time.and quality time too.

Please let us know how he does tomorrow, and then I am sure we will all have our bits of advice to offer, and lots of support on the PC rollercoaster. take care love sandrax xx

Edited February 9, 2017 by sandraW

[Veema]

Hi Fiona...I agree with Sandra...get as much info on the extent of the disease and what treatment, if any, will be offered. If it has spread outside the pancreas, you are looking at palliative care only...if it's contained within the pancreas, but inoperable due to the involvement of blood vessels etc chemo can shrink it away to make it operable...that doesn't necessarily mean a cure as it's still likely to come back, but it can give you extra time.

I have a 10 year old daughter and found that being honest with her was best...she was always told what was happening and when we were told Nige was dying, we told her too - it wasn't easy, but it's all about trust. Macmillan have a document on dealing with children, which you can download from their website or you might find it in your hospital if they have an area in there.

If you like, you can ask the nurses to put us in touch outside the forum.

Keep us posted.

Vx

[fionaw]

Thanks so much for coming back to me so quickly. I still feel alone but much less so. And if I say he had a bad evening just following a small bowl of tomato soup, with excruciating pain requiring 3 doses of morphine, followed by an evening of attempting to lie down to rest swiftly followed by reflux meaning he sat up within a minute or so, I now feel there are people there who probably understand.

On top of the diagnosis, there's the logistics - I and our son live in Spain, he remains in the UK & plies to and fro but I hadn't seen him since the beginning of January because he had appointments etc to try to establish what was causing his bloating & breathlessness. So to see him now is awful and brings home dreadfully what's been ravaging his body - but my dad died of pancreatic cancer so I have a double whammy on my hands. And wehave to go back to Spain tomorrow because friends arelooking after our pets and our son needs to go to school............ I desperately want to sort things like bed accessories (so he can lie up), etc but only have a day (at the moment- I'll do my damnedest to come back asap) and then of course he's keen - when he has a period feeling ok - to talk about 'stuff' - will, wishes, plans, etc.

So far our son seems to be adjusting but I'm sure there will be bad times and many of them.

Thanks again. By the way, once I start posting more often, which of the various forums serves best for what?

[Veema]

I'd just keep posting on this thread now....it's all in one place then. That must be tough living in different places.

Vx

[fionaw]

Well this morning, so far, the subject under discussion has been Inheritance Tax, Wealth Tax, Crematorium Plaques, being sick after three sips of coffee, and (once our son joined us in the room) where he'd want to live.

Big sigh.

And we've not even seen the oncologist. And there's only a day an a half before son & I have to go back to Spain

[WifeampMum]

Hi Fiona

Welcome to the forum but I'm so sorry that you find yourself here. As you've already discovered, it's a very warm and caring place and you will get loads of support and info as and when you need it. The nurses on the support line are a fantastic resource and I wouldn't hesitate to use them too for advice on treatments, diet and managing symptoms and side-effects, particularly now that you and your partner have had that important first meeting with the oncologist.

PC is an incredibly individual disease and although the clinicians can give an idea of prognosis and likely survival time there is a wide variation and I very much hope that your partner will be in the lucky group like my husband who was diagnosed in May 2015 and after treatment is currently NED (no evidence of disease). Also there are more treatment options these days - I'm thinking here of your dad who would have had a very limited range of options,

Your situation does sound particularly complex with the Spain/UK split and I hope that you can find an arrangement that makes life bearable for everyone.

W&M xx

[fionaw]

Thanks W&M... I suspect judging from the extent of his pain and the immediate way he gets indigestion/reflux when he drinks anything more concentrated than very dilute, plus his general 'look' that we'll be talking weeks or with luck months.

On nutrition, you mentioned the nurses. Is there likely to be more help also in the forum? Actually.........I'll go and search! I don't see how a person can fight a disease when their body is getting barely any nutrients because of that ****** disease.

[WifeampMum]

There's diet info on the PCUK website here

https://www.pancreaticcancer.org.uk/information-and-support/diet-and-pancreatic-cancer/

Lots of PC patients manage to get referred to specialist dieticians - I suggest you ask for this at the hospital. Is your partner being treated at one of the specialist centres for PC? There's a list here

https://www.pancreaticcancer.org.uk/specialistcentres

[fionaw]

Ok - Update after the oncologist meeting, but unfortunately I have a couple of urgent questions I totally failed to ask at the time.

One 2.5cm tumour just behind/below the head of the pancreas. Many minor tumours 'floating around' & in lining of abdominal cavity (if I understood correctly) ... but no obvious signs of tumours affecting other organs. His liver, for instance, was found clear at the previous tests. Initial plan the simplest chemo, single-agent gemsitovene (sp), once we know if he is responding/the tumour(s) are shrinking and if he's coping with it, then move to gemsitovene + tablet chemo version - & take it from there. He said Phil's 'obviously very poorly' .... prognosis 2/3 months - 2 years. A mobile chemo unit visits his town so he won't have to travel as much as he might otherwise. Don't need to do a biopsy because the cells were visible in one of his tests.

So.... the questions, if anyone knows the answers....

1. The pain in his abdomen, according to the oncologist, probably relates directly to fluid build-up and he said it could be drained- at the moment the next week will be meetings rather than actual treatment - is there any way of speeding up the process to get to drain it sooner?

2. Because he's eating so little, I'm concerned Phil's body is getting no natural help in resistance/ability to fight... and although the oncologist recognised this and spoke about a dietician, again I forgot to raise the urgency because now we're at a weekend, leading into another week.... what action should I take, if any? Is Fortisip for example available over the counter anywhere?

[Guest]

Speak to your GP or the oncology unit about CREON prescription if you don't already have it so that he can eat more comfortably and the GP about getting fluid drained. He/she is ultimately responsible for your husbands care.

At this stage, any calories you can get in are good, ice cream, milky drinks, cheesy mash, or mash with an egg added, jacket potato etc, anything at all, and you can buy protein powder in health food shops which you can add to the above if he can take it. My husband hated it but would have the drinks and ice cream etc... The creon is the key to helping the digestion, the more fat content in the food the more creon you need. If I lived near you I would bring you some...

Good luck,

M xx

[Veema]

OK...

The fluid in the abdomen is very uncomfortable...yes, he can have it drained, but be aware that it is a source of infection and at the slightest problem he needs to get antibiotics. I don't want to frighten you, but once the cancer had spread to my husbands abdomen, he went down hill really quickly, but I think that's because they left him too long to get it drained (they drained 7.5 litres off eventually and the funeral director drained a further 5 litres off just over a week later) and he developed sepsis which he died from. Get going with the chemo as soon as possible because that will help control the tumours on his abdomen lining and will help keep the fluid build up in control. We were dealing with locum oncologists at this point and they were rubbish.

Diet is always a tough one...can't remember if you've mentioned creon, but he will need this, it's a digestive enzyme. Get to the GP and get some meal replacement supplements, scandishakes are great as they don't taste as bad as some of the others, but also ask for some procal powders, they're brilliant at adding calories and protein without altering taste and texture.

Rushing a bit as I've to take the child to football now, but if I think of anything else I'll pop back later.

Vx

[fionaw]

Just home in Spain,wish I didn't have to leave him but atleast he has a neighbour/friend who's been really helpful.

What do you mean by 'too long' getting the drain? Specifically? And do you base that on what doctors said afterwards,or just your gut feeling?

[Elaine123]

Can you call his specialist nurse at the oncology unit and ask if she can fax a prescription for supplements to Phils GP and maybe a neighbour can collect the prescription and get it from the chemist. Petes nurse done this for us and he gets regular enshakes in strawberry flavour as that's the only one he likes. They will give him 600 calories which is a good starting point along with soups or milky drinks. Pete couldn't eat and was surviving on supplements but the GP prescribed a steroid which kick started his appetite again. Hope he can start taking nutrician soon . Thinking of you both

Elaine

X

[fionaw]

Thanks - haven't yet got the name of a specialist nurse but maybe just ringing the unit even out of hours someone could help? Does that kind of service happen?

And what about the drain issue? How urgent makes a difference? at the moment it sounds as though nothing 'active' will happen for at least another week - to me every day is torture.

[Veema]

Nige had the ascites (fluid) for several weeks...and I don't know if it was it not being drained or the drain itself or maybe neither that caused the sepsis...we were just told when he went for the drain that it can cause infections and he died the following week. Don't forget, everyone is different and my husband was very poorly with the ascites. I also thought that an infection meant high temperature and he never had one...his temperature was low, but apparently that's a sign of infection too. The oncologist also said there was no fluid build up, yet everyone else could see it as plain as day. We just had really rubbish care towards the end.

We were told the chemo would help with the ascites, but by this point he was too ill to tolerate it, so maybe if your husband gets chemo, then it will control the fluid.

Have a look at my thread...it's title is ascites...try not to overly worry, just be aware.

Vx

[Didge]

I don't think delaying the draining is dangerous but it can make an enormous difference to how the person feels, their appetite, pain etc so it should be done as soon as possible. It really is worth pushing to get it done as soon as possible. It should be a procedure that can be arranged quickly regardless of other treatment options and discussions. Xx

[Didge]

BTW I had a friend who had a,rare cancer and in the last few months she had her ascites drained every couple of weeks with no problems. It should not cause infection any more than any other intrusive procedure but infection is always something to be vigilant about x

[fionaw]

Thank you so much everyone who's responded. I've at least 387 supplementary questions which I'll come to in due course; but I wanted to say what a wonderful resource this is - even if none of us would be here by choice. I so value the fact people are prepared to share, advise, and simply be there.

Heartfelt thanks. x

[peter2901]

Hi so sorry to hear this. My advice is to chase and keep chasing . Push for earlier appointments, ring the consultants office and share your concerns . Its difficult as the specialist hospitals are so busy but it's important to get early treAtment or reassurance that a weeks wait is ok . Ask about trials that may help . My brother has pancreatic cancer , undergone successful surgery but unfortunately now spread to liver and lungs . We aren't giving up and he's having more chemo to hopefully stabilise it . He was on a trial so we had a dedicated research nurse who is fantastic and always at the end of the phone. Keep fighting and don't accept what doesn't feel right.

[fionaw]

Thanks Peter. Unfortunately the hospital hasn't got a specialist pancreatic cancer unit but the oncologist is a GI specialist; I'm hoping that is good enough providing I keep on top of googling and looking in here to know the questions I need to ask, the prodding I need to do. At the moment he's up and down - yesterday and this morning were good, this afternoon searing pain and needed lots of bed rest. But then he did admit to having done lots of house chores so going up and down the stairs multiple times can't have helped!

[Guest]

Hi Fiona,

Is he taking Creon? My husbands pain was also worse in the afternoon as any food he had eaten was not digesting...

[peter2901]

Definitely ask about suitable trials . You can search these on the cancer research UK site .you can then mention these to thes consultant . And keep talking x

[fionaw]

Not yet taking creon - I've given him a list of all the points to ask about when he gets the opportunity, but there's only so much I can do at a distance; he's getting really stressed about lists & (probably pain and fatigue) not as pro-active and inclined to push for his rights as he would otherwise be. I had hoped he would phone this morning but I suspect he's just waiting for them (oncology team) to ring him. Waiting is half the nightmare.

Repeated thanks to all for replying.

[Guest]

I'd be inclined to put Creon right at the top of the list as that will help with his immediate discomfort and allow him to eat. That in turn will help on all fronts. Could you perhaps ring his surgery or the hospital and ask someone to action a prescription for him?

I feel so sorry for him and can quite understand his stress, the palliative care team should be helping to organise these things so a call to the GP may be a good double whammy if you can Gert him/her to get a palliative care nurse round there for him to talk to...

M xx