Younger people with pc

[deb68]

Today I brought my 27 year old daughter home from hospital after 10 long weeks. Last year she complained of stomach pains and indigestion and to cut a very long story short was finally diagnosed with a tumour on her pancreas just two weeks ago even though she has had every investigative procedure possible over the last two months.

Unfortunately the tumour is inoperable and she has added complications of portal hypertension and bile duct obstruction. I cannot tell you how difficult it has been to watch this beautiful young woman endure this suffering. The consultants at the hospital were baffled by her as she is such a rare case and I think the last thing they thought was that she had a tumour which was only discovered after a surgical biopsy which resulted in her being in intensive care for two days and posed its own problems.

At the moment she is just relieved to be home and away from a ward of elderly people, beeping machines and uncomfortable beds - we have come home with a suitcase of medication and will have support from the palliative care team and the district nurses. Gemmas main problem is constant nausea and although she has been prescribed every anti- emetic there is nothing that seems to help - she also gets ascites that needs draining regularly.

We have been told that there is not much time and that she probably won't be a suitable candidate for chemo as she is so weak from lack of nutrition - this is so awful that I can hardly write about it but am pleased that I have found this site where I can communicate with others in similar circumstances.

I would love to hear from anyone of this kind of age who is affected by PC and also any families who have had loved ones of this age with PC.

My heart goes out to everyone affected by pancreatic cancer and I sincerely hope PCUK can continue to work to raise the profile of this under represented cancer so that more resources can be poured into research and treatment.

Thank you

Debbie

[Nardobd]

Hi Debbie and I'm so very sorry to hear about Gemma. Whilst pancreatic cancer is thought of as an old persons' disease, it seems to me that there are an increasing number of younger patients being diagnosed. I am 45 and my husband of 19 years, Ted, has pc. The diagnosis was a complete shock to us and I know that right now you must feel that your whole world has been turned upside down.

I suspect that the doctors will be reluctant to operate, even to stent Gemma to clear the bile duct obstruction, given her lack of nutrition at the moment. There are ways, other than supplementary drinks, which can be used to combat this problem and I don't know whether the doctors have discussed that with you. If not, do ask.

Gemma should have been assigned a pancreatic nurse specialist and (s)he will be immensely helpful in your understanding of the disease and what can be done for Gemma, so make use of him or her. These nurse specialists often have tricks and tips which help with various symptoms and are also useful in planning the route forward and understanding what might happen next.

My heart goes out to you, Gemma and the family. It's so very wrong for a parent to have to go through this with a child. All of the users of this forum will help in any way they can, whether that's moral support, advice or just giving an ear when you need to vent. Carers of those with pc have all been through the horror which you are experiencing and know that each of us need somewhere to talk where you're not judged or commented upon but just understood.

With my love and prayers

Nicki x

[Ellie]

Dear Debbie

I am in tears reading your post about your daughter. My husband has had pc for over 18 months, but we have a daughter who will be 27 in June and I really just cannot imagine the horror and anger you must have felt and the anguish you must now be going through, seeing your daughter suffer in this way. Just WHY is life so unfair to those who don't deserve it??

I hope you find the strength to see you through this terrible ordeal and as others have already said - we are here to offer emotional support on this forum, as we have all faced similar experiences, just not with someone so young. My heart goes out to you and you will be in my thoughts. Please keep in touch and we are here to listen if it helps to write and clear your head of all the turmoil you must be going through.

Don't forget to look after yourself, too.

Love

Ellie

xx

[deb68]

Hello and many thanks to everyone who has replied to my post.

Here are some answers to the questions and suggestions regarding Gemma:

Her tumour is adenocarcinoma and we have been told that even though the tumour is very localised within the pancreas, surgery is not an option due to the vascular complications.

Gem has been on supplementary drinks and was on TPN in hospital but that contributed to the ascites so it was a double edged sword. At the moment she has no appetite at all and even if she manages a few sips of supplementary drinks or even a mouthful of food she will vomit.

Gem has had a stent inserted to ease the bile obstruction - in fact she has had two since last September as they replaced the first one.

Ironically I actually work for Macmillan Cancer Support as a project manager ( am not a nurse) and it goes without saying that as employers they have been enormously supportive giving me extended compassionate leave. But the sad thing is that despite having the best expert resources and information at my fingertips I cannot make my daughter better or ease her suffering.

I also have a 20 year old son who is not coping with this at all well - nor is my 80 year old mother who simply cannot understand how or why this is happening to her only beloved grandaughter.

I will continue to use this site as I have a feeling I am going to need it for all the kindness and support that it offers.

Thank you once again for all the kind messages of support

Debbie.

[LilyG]

Dear Debbie,

I am so sorry that you find yourselves in this position. I thought my Husband, Trevor was young: he was diagnosed with Kidney Cancer at 43 and then Pancreatic Cancer at 46.

I find it very hard to put myself in anybody's shoes as we are all different in terms of situation and personality but I have found this site to be very supportive and pragmatic which has helped me.

Trevor and I have 2 young children and whilst they are not near your son's age their behaviours towards their Dad's cancer is very different: my daughter is anxious and tearful and finds it hard to let herself be 'happy' at times because being happy makes her think of Daddy and then she remembers he's not well and then she gets sad; my son will ask very black and white questions like 'will he die / get better?' and I answer honestly that I wish I could say 'they'll make him better' but I can't; he says he wishes that I could say that 'but maybe he'll just have cancer for a long time'. I think sometimes children say what we adults have been conditioned to keep inside.

Even though diagnosis can take time (we were given the all clear twice), the moment that it is given hits you like a bolt and I found (both times) it to be totally shocking: I can honestly say that I grieved for weeks the first time Trevor was diagnosed with Cancer: I could hardly speak, couldn't eat, couldn't stop convulsing with tears. This time I have needed to be stronger as the kids are older and they understand and need me more but this too is both physically and emotionally demanding and, although it is easier said than done, you should try to find some time to relax: even if it is with a cup of tea sitting down rather than on the go.

Something happened in my family when I was in my (very late) teens and although I should have been feeling something and I was told that I should be, I just felt numb and isolated and alone: I couldn't cope with the enormity of what was happening.

I may not have helped at all here but I just wanted to let you know that if this is new to you, there are many emotions that you will feel and will experience either personally or through others.

I can't begin to imagine how you must feel as a Mother but I do wish you strength and hope that you come through this as a family.

My thoughts are with you, your daughter and those around you.

[pauline]

Hi Debbie

I just wanted to let you know that I along with the rest of my family is thinking and praying for your Daughter yourself and the

rest of your family .

I can't even try to imagine what you are all going through

sending all our love to all of you at this time

Pauline XXXXXXX

[Juliana]

Dear Debbie,

You are amongst friends here and I hope we can support you and Gemma in this journey, as we all have some experience - yet all our stories are different.

I have adenocarcinoma, and my tumor was also localised to the head of the pancreas - it was the size of a small grapefruit and I was 34yrs old when they first found it (by accident - after having my 2nd baby). They did biopsy the tumor and advised it was a cyst, and that it would never cause cancer. Nearly 2yrs later, after the birth of my 3rd child I find myself having the whipple op and being told I am terminal and there is nothing else they can do for me except try chemo and radiotherapy in the hope it would not return. It did return - but I am fighting.

I know you have been told she cannot have the op due to vascular complications, I appreciate this as an artery of mine was comprimised during the op and we required an emergency graft from another vein to patch it - and keep me alive. However, if there is only 1 tumor and even if it has wrapped itself around an artery there is still a chance Gemma may be eligiable for Cyberknife treatment. It's expensive, but you may get support from your local health board/governing body if Gemma is accepted for treatment.

http://cyberknife.co.uk/

I spoke with specialists at the Harley St. Clinic in London, they were very helpful and supportive. Unfortunately I was not a possible candidate as I had 'multiple' tumors (in lungs) aswell as a regrowth around the Superior Mesenteric Artery (which they advised they could treat).

It is worth a phonecall atleast.

Also, consider speaking to another Pancreatic Cancer Surgeon. My surgeon is deemed one of the best in Europe, and what may be an inoperable tumor for one surgeon may be a possibility for another.

http://www.wales.nhs.uk/sitesplus/863/page/40842

http://www.clinicalschool.swan.ac.uk/sec-surg.html

(My surgeon is named in both articles - and pc tumors are his speciality)

We both know it's a fight worth throwing everything at. I felt so wronged, robbed of everything I had worked so hard for - my childrens future, my marriage - my life etc - my feelings of desperation and anger where manipulated into energy to fight the disease, and try to live life as normally as possible for my babies sakes.

The difficult part is encouraging Gemma to hope, eat and get stronger.

Have your specialists considered putting a feed tube directly into her stomach (jejunum peg)? It will give direct access to the lower part of the stomach, which usually bypasses the 'nausea' problem - or sometimes they feed directly into the small intestine, bypassing the stomach altogether. Personally I would go for the stomach, as if it's not used it will continue to shrink and may cause further problems when Gemma does regain her appetite and wants to eat normally.

http://www.cancerhelp.org.uk/coping-with-cancer/coping-physically/diet/managing/drip-or-tube-feeding#ent

I have had experience of TPN and stents inserted via endescopes etc etc.....I can appreciate some aspects of what Gemma is going through and has gone through already. The nausea side of things may also be psychological, I found that to be the case with my nausea during my course of chemo last year - it was the thought of it - that made me sick. I couldn't get passed it to be honest but as soon as chemo finished I felt fine.

Personally I would try to encourage Gemma to eat regardless of the vomiting.

Make calorific mashed potato (add egg, milk and cheese etc to help bulk it up) - and get her to take 1 mouthful every half hour.

White fish that has been poached or grilled.

Steamed veg.

Probiotic yoghurts/drinks (or capsules from the Health shop)

And just a little of what she fancies, favourite stuff - she needs to have something to look forward to.

Whilst I still had my tumor, my pancreas stopped producing the enzymes to digest my food. So even though I was pregnant and eating, I was losing weight. Food would go through my system and cause gripe/colic and not be pleasant coming out the other end. If this is the case with Gemma and her stools are fatty/light coloured/aerated and smelly - you may want to consider asking for some CREON. These are pancreatic enzymes, and are taken with ALL foods, snacks and meals. I started with the 10,000 strength - 1 or 2 with each meal, but they did nothing - once I increased the dose to 25,000 x 1 or 2 - things started to return to normal.

I hope the above has helped in some way, I don't want to bombard you with information overload but as per usual I can see I have waffled on a bit.....

I am so sorry this is happening to your family, and send a big hug to you all - be strong, support each other and please do not hesitate to ask questions or just vent some anger etc. here as we have all done it, we all need it, and you will always find someone to listen and talk to here.

Anyway, have to go....I 'smell' a nappy that needs changing....... :S

Juliana x

[deb68]

Hello and thank you to everyone for the helpful advice and suggestions. I will defintely check out some of the websites mentioned.

Unfortunately we had a setback as after just four days of being home Gemma developed a nasty infection and was rushed back into hospital as an emergency admission. Her stent was blocked and was causing sepsis - they did yet another ercp and have replaced the plastic blocked stent with a metal one. I have spent the last two days at the hospital as Gem is in ICU - have dashed home for clothes and things and will shortly be heading back. Such is my life at the moment!

My daughers resilience and courage truly amaze me and yesterday she was sitting up in bed eating and drinking and joking!

We now need to get over this blip and then they are talking about inserting a portal vein stent to try and relieve the presssure and help prevent the ascities - only then will they even begin to think about any treatment for the tumour.

I know how individual this is and that everyone has a different experience but it has been so helpful to read some of these posts and know that people really empathise and understand what we are all going through.

I wish everyone affected by this cancer every bit of luck in the world and lets all keep fighting!

Thank you all again

debbie.

[Nardobd]

Oh Deb, you and Gemma are having a rough time of it right now.

I know what you mean about Gemma's courage - sometimes all I can do is stand in awe of my husband and his dignified and brave manner in dealing with all the issues this dreadful disease causes. It's truly inspiring.

Let's hope that they can soon insert the portal vein stent and that whatever treatment they can give Gemma for the tumour helps, even if only a little (we would all welcome a miracle for our loved ones but for now I'll settle for any positive news!). I'm sure that Gemma's resilience and personality will help tremendously.

Do keep us up to date with how Gem's getting on.

Love

Nicki x

[Ellie]

Hi Debbie

Very sorry to hear things are not going well. Just to say that I hope the situation improves and send you my best wishes in the meantime. Hope Gemma is home again very soon.

To Juliana - also thinking of you. You, too, are much younger than most on here and you also have your young children. You've been through a nightmare and just want you to know that I'm wishing you the strength to keep fighting and to stay positive, as hard as that can be sometimes.

Love Ellie

xx

[vicky1389]

my partner who is 28 has just been told he has got this and theres nothing they can do to help him they were shocked because of his age at the hospital and today i have got to sit and tell our 4 children who range from 10 to 5 that there dad has got only months left because he only showed the later signs and it has spread to his liver aswell im frightned as dont know how quick this thing takes hold of you he looks fine apart from the pain and being a bit yellow how can someone who looks ok be dying all the hospital have done have sent him home with pain relief im frightened to ask for a second opinion as if he has got months i dont want him to av to go through more biopsy and hospital stays if theres nothing they can do at the moment i think he is in denial about the whole thing is this normal when you have just been diagnosed

[vicky1389]

hi again all they have said is there is nothing they can do as its to advanced i asked about trials and chemo but they said basically they think its to advanced due to the liver being 2nd stage i dont even know what 1 it is all i know is that its pancreatic cancer they have not really explained anything they wont put a stent in either we hve been given a macmillan nurse who is coming to see us monday and district nurse phoned earlier to see how i was getting on with giving him his meds to be honest im so confused they said go home and enjoy the months you have got left but i feel a failure as i dont feel everything has been done they have not offered anything only his pain relief for the last few weeks i had to hide the fact that the docs thought he had this and that they thought it was seriuos which felt so wrong as we have always been honest with each other in 13 yrs but they told me not to tell him which was hard as having to control my emotions around him was awful so it came as a complete shock when he got told the other day as all he was told before was they thought it was stomach cancer im going to ask macmillam monday to explain what type he has as like i said not much has been explained to us

[deb68]

Hi Vicky

I am so dreadfully sorry to hear about your partner - it does seem incredulous when we are simply told there is 'nothing that can be done'. I am only just coming out of the shock of being told that about my daughter and am now in fight mode - How can they just leave these young people to die without offering any options?

I have found the messages and suggestions on this site a tremendous help and I intend to ask our oncology registrar on Monday what she knows about other treatment options including cyberknife and treatments not currently available on the NHS or treatments abroad. At this time cost is no option - we would remortgage our house if there was a chance of getting Gemma some treatment - in fact I would gladly sleep on the streets if it meant there was some hope.

I do wish you and your family all the best and lets all keep fighting and challenging!

My thoughts and prayers are with you.

For those of you who have enquired about Gemma - she is doing well following the infection and things are slowly improving and although she is still in ITU they are pleased with her progress. Thank you for everyones good wishes.

debbie.

[Nardobd]

Hi Vicky and I'm so sorry to hear about your partner. I can certainly empathise with you - my husband Ted had never had a serious illness in our 19 years of marriage until he was diagnosed with this disease and jaundice was his only noticable symptom too. We heard the news "It's probably months, not years" from the doctor together. It's an incredible shock and I know just how it turns your world upside down.

Ted's reaction was to simply deny that this was going to beat him. 14 months later he's still of the same opinion!

By far the most common form of pancreatic cancer is adenocarcinoma and it's likely that the doctors would have told you if it was another type but do ask the Macmillan nurse on Monday just to make sure. In the meantime, don't worry about it - you have enough to deal with as it is!

Just to reiterate, you are not a failure! I remember only too well the feelings of "I should have noticed something was wrong"; "I should make them DO something"... there's hundreds of horrible thoughts like that running through your brain, I know. You couldn't have noticed anything was wrong and you can't force the doctors to do something which they think isn't in the best interests of your partner. Nothing you've done or haven't done caused this or made it worse. You haven't failed your partner.

I know that right now it's all like a big nightmare. It takes time to absorb the news. Give yourselves the time to do that and just take a breath before trying to deal with all the implications, the ifs, buts and maybes. You can't do it all at once! All you can do is love your partner and children, support them in the best way you can and don't forget that you need love and support too - it's all too easy to burn yourself out and that's no use to anyone.

With my love and thoughts

Nicki x

[Nardobd]

Hi Debbie - nice that we cross-posted and I'm pleased to hear that Gemma is doing well.

When discussing possible alternative treatments, do ask the oncologist what trials might be suitable for Gemma - I've investigated a few for Ted and although we haven't embarked on any yet, we're just waiting for the right one for him. There are trial databases and some are very good but some aren't up to date and I've found that the details of trials sometimes aren't particularly layman-friendly. However, if there's something that you feel might be suitable you can always ask.

At the risk of being a 'naysayer' I know exactly that feeling of "I'll go anywhere, do anything..." However, please do look at everything you are offered with a sceptical eye - there are a lot of people out there only too happy to make money out of others' misery. I remember the sentiment (if not the exact words) of Patrick Swayze: If a person had a cure, they wouldn't be selling it to us from a small obscure hospital or clinic because they'd be both famous and rich!

That's not intended to be dismissive but I think in the early days after diagnosis it's only too easy to go chasing the rainbow.

My thoughts are with Gemma, you and the family

Nicki

[vicky1389]

hi everyone first of all i would like to say thanks to all of you for giving me support and advice in 1 day you have gave me so many questions im going to ask my doctor monday as there is so much we have not been told first of all we have not been given an appointment with a oncologist or specialist we have not been told whether the reason he cant have a stent is because of liver failure or blocked bile duct or what type of pc it is all i know is its pc and in his liver aswell is it because im 27 and my partner 28 that they think were uncapable of knowing the whole facts also my partner did lose weight he lost 4 stone in a month but steroids have gave him a really big appetite so hopefully he has put some bk on its nice to know there are people here that know what were going through people who have been through or going through the same i love my family and friends to death but its hard not to scream when they say things like everythings going to be ok or are you ok 24/7 i know they mean well debbie and nardobd i really hope all goes well with gemma and ted xxxx

[Ellie]

Dear Vicky

I am so very sorry to hear about your partner. All of us on this forum will understand the shock and upset you are going through right now. Again, he is so very young to have p.c. and to just be sent home with pain relief and nothing else is unbelievable! You should be receiving a lot more help and advice, so you should see your own GP and ask what is going to happen, or contact the hospital direct, if you have a specialist to refer to. I'm sure you will get more advice from others on here, who are a lot more clued on procedures than I am, so wait and see what other replies you get.

One thing you can count on is that you will get a lot of emotional support and comfort from talking to others on here. We understand how you are feeling. We are here to listen and help where we can. My heart goes out to you, especially with having young children, but try and keep positive until you have got more info and advice.

Keep in touch and let us know how you get on.

Best wishes

Ellie

xx

[Juliana]

Dear Vicky,

Sorry I haven't posted sooner, my boy has had chicken pox and now my little girl has got it, just waiting for the little one to start scratching and it will be a hat trick!

I feel so much for you and your partner, faced with this disease and from what I can tell little support or knowledge given by those you expect the most from. I can truly sympathise with the feelings of being let down, or not told enough, not given options or basically being made to feel like it's all over already. You need information, answers and support - simple as. We at the forum can provide a lot of these, but answer wise you really need to pin down your specialist and an oncologist. Write your questions, and take them with you - but don't just read from them, write the answers down next to them too as trust me as important as the information is, our memory has a way of blurring edges and confusing things, especially when emotionally exhausted and stressed out. Don't feel embarrassed about writing stuff down, I do it all the time - and make them wait till I have finished before moving on to the next question

Don't be worried about asking for a 2nd opinion either - you may get the same diagnosis/prognosis but you may speak to someone who explains everything so much more clearly, is more sympathetic and may have other suggestions you may not have considered or been given by your other specialist.

Try to go by how your partner is feeling wihin himself. If in general he feels ok, has got his appetite back and is putting weight on - that is a blessing.

But if he needs a stent and there seems no valid reason (which I do not understand as stents are common use with this disease and are great for relieving pressure/bile etc - and not that intrusive a procedure, so not life threatening) push for it, ask why - ask them to explain the pros and cons.

Try to get some sleep, you both will need it - not only is it tiring dealing with the whole situation, but the whole chasing up for results/answers/appointments will take it out of you too. And lets face it, we have better things to spend our energy on.....like out little ones.

Where are you guys from btw? Not sure what your social services offer you in your area, but it may be worth enquiring about Flexi Home Support - ask your health visitor at the surgery you take the kids to. They can supply free ), or help with food shopping, picking kids up from school etc - they are worth their weight in gold if they are available to you.

I wish I could give you all a big hug and try to help out the best I can, my heart really goes out to you guys and the kiddies - I too have felt the despair, there is no easy way through this - you just have to muddle through as best as you can. Take all offers of support - even if you think you don't need it, you will....trust me x

Please keep us updated with your progress, take care -

Juliana

p.s. So pleased to hear Gemma is on the mend, my stent did the same thing - landing me in hospital requiring the infection to be drained out of my liver, through my ribcage into an external bag - not nice! Sending you my love xxx

[deb68]

Hello to everyone

I just wanted to see what peoples experiences were of portal hypertension with pc. Gemma is on the mend from the biliary infection but her ascites started to build up again causing a lot of nausea and discomfort so they had to insert yet another drain. This happens on average every two weeks or so. They said they would try to insert a stent into the portal vein to try and relieve this build up but looking at the latest CT scan they have decided against doing this as the blood clot in her portal vein is too large and therefore this will be too risky. Gem is soooooo fed up as during the last three months she has only spent a total of four days at home and then this infection struck and knocked her back again. They are now talking about her coming out of hospital this weekend so I am keeping everything crossed that this will happen so I can sit in the garden with my daugher beside me and listen to the birds sing and feel the sun on our faces.

Has anyone any similar experiences or suggestions regarding the portal vein and any tips for managing the ascites - apart from medication - would be gratefully received.

My thoughts are with you all and once again many thanks for all the support and encouragement I have received from this site. Vicky - your partner is nearly the same age as my daughter and I so feel for you.

Debbie.x

[vicky1389]

hi all just to let u know my lovely partner passed away yesterday morning he seemed fine monday a bit bloated and just accepted that he needed to start making plans which he was going to do tues tue morn he couldnt move and had to go to hospice where we decided to get wed which was lovely but also very sad the disease just moved on so rapidly and i lost him wed morning now im so lost and just cant accept it we was supposed to have months not days the only comfort i have is i made sure i was with him when he took his last breath thank you all 4 your kind support and advice b4 this i shouldnt be organising a funeral i should be on my honeymoon with the man i love and always will the kids seem so lost but going to do my best by them as that is what there dad would of wanted

[Nardobd]

Hi Debbie

I am sorry, but grateful, that I can't help with the ascites or portal hypertension having had no experience of that. Just wanted to say that I do hope Gemma gets home for the weekend and that the doctors can sort something out.

[Nardobd]

Oh Vicky

I'm so very sorry to hear the news. If you need anything at all you only have to shout.

If you'd like some support, counselling or similar I know that PCUK do offer this and do please either get in touch with salma@pancreaticcancer.org.uk or simply post a message on the board and I'll organise it so that someone gets in touch with you.

It's a terrible traumatic time for you and if there's anything any of us can do just let us know.

With my love and thoughts

Nicki

[Ellie]

Dear Vicky

I am so terribly sorry to hear your news. What a truly awful time you have all just been through. You must be completely shell-shocked.

There is nothing I can say that will help so I will just offer you my sincere condolences.

Love

Ellie

x

[deb68]

Dear Vicky - so very sorry to hear your news, my thoughts and prayers are with you and your children.

There are no words

debbie.xx

[Juliana]

Dear Vicky.....such sad news, just don't know what to say x

How wonderful you two made the decision to Wed on that morning, regardless of the situation I am sure you made your partner the happiest man in the world, try to cherish that precious moment above all else that happened on that day. You sound a strong woman, and your children will need to lean on you for a while - I just pray you have some family\friends that you can lean on in yourself....there is always this forum here if you ever want a chat etc.

Thinking of you and your kiddies, like Nicky said - if there is anything we can do, please - just ask and we will try our best.

Juliana x