Experience request.

[Jackjo]

Hello everyone, I am Jackie, another new member to this board. My Mum was diagnosed last Monday (22nd November) finally after a series of tests and months of visiting the Drs, seeing multiple locums and getting nowhere except told it was poor management of diabetes, IBS and all the stuff that it appears many on these boards have experienced. It has been due to my sister and I pushing for more tests and paying for a private consultation that we finally discovered what we feared all along last week. We are devastated. The only bonus has been that our instincts have made us push it this far and that in some little way we are a bit further ahead of the game than we could have been.

Initial feelings are that the position of the tumour makes it inoperable. Advice so far has been that she will have chemo to keep the tumour from growing further and will be helped with whatever pain relief is needed, but she has a more detailed meeting with a consultant this Wednesday. This is why I am asking for the benefit of members experience.

It is a big ask and I realise that all individuals are different but it would be really helpful if experienced members could maybe think of a question that, when they or their loved ones were first diagnosed, they really wished that they had asked the consultant or things that they could have requested that they didn't know about until later. Can anyone help??

Also, my Mum has lost a serious amount of weight in the meantime and I am worried that she is going to find it more difficult to suffer the effects of chemo if she has it - how have people addressed this and are there any food supplement type things that we can get for her to try and give her more energy and strength to be in a better position to withstand it??

Anyway, anger and frustration aside as I know there is no point, any other suggestions would be most welcome and we will wait and see what happens now on Wednesday to take it from there.

Thankyou

Jackie x

[Guest]

Hi Jackie,

So sorry to hear about your mum. You must be feeling very upset, anxious, stressed, confused about all the info you've had already and very worried about the future. My thoughts are with you and your family.

My dad was diagnosed about a year ago today and was lucky enough to have the Whipples op followed by chemo over the last six months and is currently doing ok - I remember when he was first diagnosed and I had lots of questions which is when I found this site - although I tend to 'follow' more than 'post' these days, it has been an amazing source of strength and comfort for me. Will try and give some 'helpful' advice.

Firstly, intreresting (and sad) you had to pay for a private consultation - similarly to your situation, my dad was clearly a very poorly man and the diagnostic process seemed ridiculously slow, starting with ruling out 'lesser' illnesses like gallstones and saving the biggy til last. Whilst I can understand this may make some sense, it also seems wrong given the potentially progressive nature of PC and in all cases, best to catch it early. Every time I suggested that things were not moving quick enough I'd 'threaten' to go private and fortunately the doctors involved made things happen that much quicker. This feels unfair particularly if those ill are not in a place to push for tests and don't have anyone like you or me to push on their behalf. My first bit of advice is really to keep that up and don't be afriad of being pushy.

For your appointment on Wed good idea to go with a list of questions and don't worry about asking the same question / asking the consultant to go through things again, it's so important you and your mum understand the options and the implications of each. Have they told oyu an op is not feasible? With my ada they sat on the fence for a while as they coulldn't be sure it had spread and he was an unwell 75 year old man (although previously very fit) so we almost had to get them to explore with us (rather than them making the decision) about whether the op was an option.

In my experience some consultants can be quite vague and talk around the actual prognosis, size of tumour, likely implications of treatment, expectations etc whereas some 'tell it how it is'. Part of asking the questions is about how much your mum wants to know at this stage in terms of prognosis. But certainly ask about the size of tumour, type of chemo, alternatives, likely effects, length of treatment, how it will be monitored, what to do between treatments etc. I found the macmillan website quite helpful in giving me some info so I could at least follow what the doc was talking about. If you feel the consultant is talking around issues and your mum, you and your sister really want to have a more detailed prognosis about expectation then do ask. Personally, we were in danger of having the seriousness downplayed and as a result my dad took longer to come to terms with the illness. Also bear in mind that once your mum has decided on treatment then there'll be more questions you can ask at a later stage.

Two of the hardest things we've found to deal with are how we should respond if there's a 'reaction'; to chemo or a change in symptoms before the chemo started - I think I'm thinking about sudden increases in temperature, further change in urine colour, tenderness around abdomen / back - this can cause significant worry to your mum and your family and what you really need is some clear advice and ideally a number to call if you're unsure (and to not feel like you're bothering someone with 'silly' questions). I remember the stress of trying to care for dad when he really seemed like he was going down hill and being able to ask someone 'what does this mean?' was invaluable.

The other thing that we found difficult, and this relates to your concern about weight loss) is how to stop weight loss and increase weight. It felt like we were so worried about dad losing any more weight we were constantly trying to get him to eat high cal food when he had really lost his appetite. This was an issue really from diagnosis throughout operation recovery and chemotherapy. We were promised support from nutritionist but this didn't really happen. You should be able to get a nutritionist to visit your mum and give advice and get a prescrption for supersonic high cal drinks which will help. I made a lot of vichssoise soup with tonnes of heavy milk and cream and potato - more calories in one spoon that I would certainly want to eat but was good for dad, eating in small amounts.

Re the chemo - whilst my dad hated the thought of it, he got away quite lightly and expierenced some hair change, weakess, tiredness and a couple of incidents of flu like symptoms where he went into hospital for the night but is now recovering. Your mum's side effects will depend on type of chemo / strength etc.

Feel like I've rambled a bit and not sure how helpful - there are others on this website who are incredibly knowledgeable, much more so than I, about the more techinical bits of treatment. What you've done already in terms of pushing for the tests so you're ahead of the game, and planning for your meeting with the consultant is fantastic and absolutely keep using that approach. Also make sure you get a number to contact him by or a nurse if you have questions that you think of after the meeting. You should always be able to contact someone easily.

So in summary, go in with a list of questions and make sure you come out of it with a support network where you can call people (including nutritionist) when you need to with questions rather than having to wait for an appointment. At one point I had the mobile number of a doctor which was invaluable - realise this is uncommon but it seemed to work for him in just expediating worries / creating unnecessary appointments. Stay lionked in with the website, a brilliant resource. And stay realistically hopeful - it can be hard especially in the early days and reading info / websites / peoples experiences can simply 'scare' you. Take each step at a time.

Let me know if there's other quetsions you have (or you want a recipe for vichysoisse soup and I really hope your meeting with the consultant goes well on Wednesday

Cx

[Jackjo]

Dear C - thankyou so much for taking the time to respond - I have made a note of all of the things to ask and look for information and assistance on and I am sure they will come in handy on Wednesday. I had also thought about soup as more digestible for Mum to build her up and will take this as an idea to push further with her.

She has an appointment this afternoon with her GP to see what happens with him next and then and she has just advised me that she has some sort of biopsy booked in for tomorrow (I need to find out more but she was dashing out), then the consultant appointment Wednesday so hopefully we should be in a more knowledgeable place by the end of this week. The difficulties we are experiencing are made worse by the fact my sister and I live in the Isle of Man and we can not always be available to go to appointments with her and my Dad. We are just trying to arm them with as much information as we can and things to ask that they may not think of and see what comes out. I presume if we feel we need more help we can also speak to the consultant if necessary??

I will have a look on the other boards too and see if there is more info that can help but it has been a relief to see other people experiencing the same things as us and also to have some idea of what the future can involve - forearmed is forewarned in this circumstance for us.

I'm glad your Dad is doing ok and here's to a continuation of that.

Jackie x

[volmod]

Hi Jackie: very sorry to hear about your Mum. It must be so difficult for you not being on the spot.

Re issues for the doctor/consultant - you have had a very comprehensive reply from CFF and there's not much that I personally can add.

However, in case you have not seen it can I point you in the direction of a list of suggested questions from our website http://www.pancreaticcancer.org.uk/support_basic_questions.htm Hope that's helpful. warm regards, Vee

[Nardobd]

Hi Jackie and I'm so sorry to hear about your Mum. My husband was diagnosed with inoperable pancreatic cancer in February 2009 and thankfully is still going strong, so there are people who "beat" the statistics. My husband's tumour was inoperable for the same reason as your Mum's. After six months of chemo it had shrunk by about 30% but was still inoperable as it was adjacent to an artery.

You sound as if you're almost as proactive as I am - I pushed, and pushed(!) the staff at our local hospital - I'm sure I was quite the pain in the backside but I think it does make a difference. I'm still not slow to be demanding if I think it appropriate!

One of the people who has made all the difference to us is a specialist nurse who deals solely with pancreatic patients. She's my first point of contact if I need quick telephone advice and my route to getting things done faster. So, one of the questions should be "Do you have specialist nurses for this type of disease and if so, who has been allocated to me/my wife/my mum?" If your Mum can get to meet her on Wednesday that would be fantastic but if not it might be worth making a separate appointment to see her.

Most of the other common questions are on the website link Vee has posted. I always end each appointment by asking the consultant whether there's any other information he thinks we ought to know or whether there are any other questions which I should have asked.

Your Mum may need to give specific permission to the hospital to talk to you openly about her disease and treatment - they are so cautious about confidentiality these days.

Your Mum shouldn't need a general anaesthetic for the biopsy - it is normally done via an endoscopy where the needle is put down the throat with a camera. According to my hubby it's uncomfortable but not horribly painful. There are several reasons for doing a biopsy, the most common ones being (a) to confirm cancer diagnosis (important if your Mum is looking towards clinical trials because they often need a confirmed diagnosis) and (b) to find out what type of cancer it is: most pancreatic tumours are Adenocarcinomas but there are a few other rarer types (see www.pancreaticcancer.org.uk/types.htm). Hopefully the results of the biopsy will be available for your Mum's appointment on Wendesday.

As to weight, this is a common theme on the board. If the reason for losing weight is that your Mum has no appetite then steriods may help, together with food supplements. Get advice from the consultant on this. Otherwise "little and often" is a frequent recommendation. People often find the foods from their childhood are comforting and if it's too much trouble to cook then ready meals from the supermarket - ok it's not the best but it's better than nothing! A varied diet is important but most of all your Mum should eat whatever she fancies and the more calories the better!

Most of all remember we're here! I liken this board to a family - we're all rooting for each other and here to support each other as much as we can. If you need to ask questions, to vent or simply to scream...that's why the board is here.

Best wishes

Nicki x

[PCUK Nurse Jeni]

Hi Jackie,

I hope you have had some more information after your appointment on Wednesday.

I would be delighted to answer any queries you may have. You can contact me via support@pancreaticcancer.org.uk

I run the support service for the organisation and have experience of pancreatic cancer and the treatments, etc...

Of course, there is,as was pointed out, some great support on the discussion board.

If you have a specific query, do not hesitate to get in touch.

Jeni.

[Jackjo]

Hello everyone and thanks for all of your replies.

Mum has more information to a certain extent from her hospital visits this week. On Tuesday she had a biopsy, again, ahead of time as there had been a cancellation and then she had her arranged visit to the consultant yesterday. As you know, living a fair trip away meant that my sister and I couldn't attend with her but I devised a lost of questions as suggested and also from this website and she had some too and these all came in particularly useful not necessarily with the consultant himself, but with the specialist nurse that has been assigned to her.

Anyway, from what she was told things haven't changed in terms of prognosis as the position of the tumour is in the centre of vital blood vessels which makes it inoperable and not suitable for radiation treatment. So, the main option is chemo and they are still arranging the appointment with the man that sorts that and waiting for the biopsy results to see what type it is etc. The main positive is that at the moment the cancer has not spread elsewhere and the support mechanism seems quite strong, Mum has direct telephone numbers for the specialist nurse and they are sorting out nutritionist help out to help her. She has been provided with enzymes to take to help her digestion and more guidance on pain relief etc. I personally do not think that her chemo will start until after Christmas now, and talking to her, I think she wants to have a nice Christmas and New Year first. I can appreciate that.

Finally, Mum has as part of her chemo agreed to take part in a clinical trial which means that she may be given chemo alone, chemo plus something or chemo plus plus. I am not aware of what this means but she feels that she really has nothing to lose by taking part in it.

I hope that everyone on here is ok and doing well and I will probably be here more sooner rather than later. I am not sure how to feel about this all but am hoping that to try and be as normal as possible and provide practical help will only serve to make it easier for Mum. She is 67 tomorrow, so Happy Birthday Mum and here's to many more.

Jackie x

[Nardobd]

Hi Jackie and I hope your Mum is having a great birthday. I'm so pleased that you got a little more information from her appointment with the hospital this week - just sad that the news wasn't more positive.

As to clinical trials, I don't want to insult your intelligence by reiterating the basics you probably already know. Suffice to say that Cancerhelp UK have comprehensive information on their research and trials section of the website which can be found here: www.cancerhelp.org.uk/trials. It's great that your Mum will definitely receive the chemo she would have received under standard treatment. Even better, she may be one of the first to try a new therapy which might just prove to be the one that works! Even if a patient embarks on a trial they can withdraw at any time, so as your Mum says, she has nothing to lose.

Do let us know how your Mum (and you and the rest of the family) are getting on as she goes through treatment.

Regards

Nicki x

[Jackjo]

Hello all,

Just a bit of light entertainment in an otherwise sad and worrying world (maybe I am a bit warped but hey ho)- after a week of a bit of doom and gloom I rang my Mum to wish her a Happy Birthday. I asked her how her day had been so far and she said not so good, so of course , I feared the worst.

Anyway, it turns out that she is as right as rain (all things considered) but that my Dad, had ventured out to the pub last night and managed to slip over in the ice and had hurt his back and leg quite badly.In addition to this, they were supposed to be going away for a weekend with friends to Wales and they had found that their front door wouldn't lock for some reason, so they were probably going to be stuck at home for the weekend when they should be away and having a lovely time. My Dad, being a typical man (sorry to the male readers) had completely forgotten until late morning it was Mum's birthday so had only just passed on my pressies and was feeling very sorry for himself. I am sorry, but their luck has been so bad, I couldn't help but find it funny , I did try and lighten the mood somewhat when chatting to them. Suffice to say, Dad was much better even later on this morning, the door was fixed and as I type they should be having a christmassy weekend in Wales. Mum will have a lovely birthday after all.

Anyway, what else can happen as they say but really I know the answer to that question - humour has got to help though hasn't it???

I think there will be more information in the next week or so and will keep updating here as well as looking to see how others are going as I feel a bit selfish at the moment taking rather than helping.

Jackie x

[Nardobd]

Jackie

You and I share a sense of humour I needed that giggle this morning - thank you.

No need to feel selfish - the board is all about taking when you need and giving when you can. Right now, your "giving" bit has to concentrate on your parents. We've all been there and completely understand that.

Looking forward to your updates as and when.

Love

Nicki x