Advanced pancreatic cancer - urgent advice please

[Louise123]

My sister is 57 and had a CT scan done just after Christmas . It revealed a legion on a large area of her pancreas, her spleen and spots on her kidney. The medical staff say they are not referring to is as cancer officially as they have not received the results of her biopsy yet. Everyone knows its cancer as they said it can’t actually be anything else. Her first biopsy failed as they didn’t take a legion so she had another one last friday and we are awaiting the results. She is in hospital, very very weak, hallucinating and is confused. She wants to sleep all the time. Her weight has plummeted rapidly and she has no interest in anything and is not eating or drink hardly at all. She did have a small blood clot and has thrush in her mouth. Shes in a bit of a state really! She is on a ward for upper GI surgery and not a cancer ward although I am told there are cancer patients on that ward too. She is not being particulalry well cared for on that ward and this is something Ive taken up with them.

Since she went into hospital last week to have her second biopsy of the liver done, she has been kept in and she has rapidly deteriorated and I have contacted her GP, PALS and a nurse coordinator to say that I have massive concerns that she will not be with us by the time we get the biopsy results (end of this week or next week). May be Im being a bit over dramatic but I feel I have to be to be heard. Today she had a catheter fitted. Her eldest son is going to make an appointment for us to speak with a doctor or a registrar to get an update on her current situation but does anyone know whether these are signs that she is near the end of could she go on for weeks or months? We have already been told by her GP that if she is that weak they may not offer any treatment so we are aware of the ultimate outcome. I have huge concerns as I don’t want her to pass away when we haven’t been spoken to or anything how do I know whether or not I am being unduly concerned and are the above indeed signs that she hasn’t long? If anyone can help, I would appreciate it.

[dkm jack]

Hi, Louise,

My mum sadly died from this cancer in November, and from what you're describing I would recommend you try to have your sister moved to a hospice. Not to say that this is the end, but the care my mum received made it possible for her to have her catheter removed, her symptoms controlled, and allowed her to return home. Albeit only for a few weeks, but it gave us all time to prepare, and for her to feel that she was having the best possible care.Also get the local district nurses involved...Be a pain..Not a rude one, but be persistent. There is help out there, and reading some of the stories on this board, if she can gain some strength..Who knows how long she may have.

This is only my opinion,but I always thought hospices were just places to go to die... They are so much more.

Wishing you well

love

Jackie x

[pamela]

I agree with Jackie,try and get your sister moved to a hospice,my dad went through the oncologist dr.through the hospital and got in that way.The hospice was able to get his pain under control and he was able to come home.

the district nurses were great with him.

I lost dad last year through this cancer and know how heartbreaking it is as many of us on this board do too.

pamx

[Ellie]

Hi Pamela

So sorry to hear what you are going through.

I, too, would strongly recommend you try and get your sister into a hospice. My husband had almost given up at one point and our district nurse referred him there for pain control and it made such a difference. He is in there, for the 3rd time, at the moment, again for pain control. From what you have said, I would expect a hospice to be better placed to give your sister more personal care. Ours isn't just a place to die - it gives everyone the best possible chance to live.

I used to be frightened of "bothering" medical staff but have learnt that you need to be strong and try to get the best possible care for your loved one.

Let us know how you get on.

Best wishes

Ellie

[Louise123]

Thank you so much for your replies. After making lots of noises the other day (GP, PALS, phoning the ward she is on) already I have noticed the differnence and they now cant do enough for us. Today we saw the registrar who was great. They want to wait for her biopsy results which he said will be here so they can discuss them at the consultants meeting on Friday and then hopefully meet the family on Friday afternoon or Monday. He did mention today thet an option may be to transfer her to the oncology ward where they said, the care is fantastic and very different from the ward she is currently on. We were told tonight that her liver is worse and will at some point stop functioning. She may only have 2/3 months but will discuss more on Friday after the biopsy results.

Ater your posts we will discuss the benefits of transferring to a hospice however Im concerned that if my sister is given the option she may just give up all together - everyone knows why people go into a hospice.....

I only took her to A & E the day after boxing day and now this - can't believe it and it is awful to see her so sad - why her?

xx

[PCUK Nurse Jeni]

Hi Louise,

I am sorry to hear about your sister and what you have been going through.

Firstly, The biopsy is crucial.This will determine what the cancer looks like under the microscope and, more importantly, the origin of the cancer. The CT has shown up lesions in a number of places -the fact that there are some in the pancreas does not mean this is pancreatic cancer.It is rare for a cancer to originate in the spleen, but not so for it to originate in the kidneys (renal cell carcinoma). Pancreatic cancer and renal cancer have different appearances under the microscope, and the treatment would be entirely different.

Her weak state at present can depend on many factors. She may be dehydrated, which in turn causes electrolyte imbalance in the body. This often gives rise to confusion and hallucinations if sodium or calcium levels are adversely affected. If she has not been eating or drinking, this is very likely. Also, if there is a problem there, it would more than likely cause altered kidney function. This will cause similar problems, including loss of appetite and sleepiness. Things which may be affected are urea, sodium, potassium and creatinine levels. Thrush in the mouth will also affect the appetite.

Reagarding the Upper Gi ward, this is where patients go until a diagnosis is made, as the symptoms and Ct results are regarding the upper part of the intestinal system, as opposed to the bowel, which is lower GI. She will be sent to the appropriate ward I would guess. If she had an operable cancer, she would remain there if it were upper GI.

Having a catheter fitted is a good thing, as the staff will be able to monitor her output, which helps to show how well the kidneys are working. Usually, they would monitor how much is going in versus how much is being excreted, so as not to overload the person with fluid.

It is good that you were able to speak with the registrar, and that things were explained more to you. It is difficult to say whether these signs are signalling that your sister is "near the end", as you say. Kidney problems are reversible a lot of the time, if the patient is well hydrated and other symptoms corrected (ie: treatment for low/high potassium or calcium levels). Whether your sister will be ready for any treatment, really depends on the biopsy, and on what type of treatment is available for whatever this shows.

You will know more once these results have been given, and if it is pancreatic cancer, she may be able to have some chemotherapy.

You may contact me via support@pancreaticcancer.org.uk if you have any more questions in relation to treatment.

Hopw this is of some benefit?

KR,

Jeni.

[Louise123]

Thank you so much for your reply - it clarifies a few things for us.

Please can anyone tell me, what are the benefits of being in a hospice as apposed to an oncology ward? I have been told that the ongology ward in her hospital is great and she will be given much more time/attention/care?

Many thanks

Louise

[PCUK Nurse Jeni]

Hi Louise,

There are benefits to both. An oncology ward is the best place for those with cancer who are undergoing treatment, or have symptoms which need dealing with. They deal with slightly more "acute" problems, though not solely. On an oncology ward you might find those who are having certain chemotherapy regimes, which need admission (most are given as an outpatient); those who are on chemo and are unwell for any number of reasons; those who are having symptoms of their illness which need intrevention ie: draining fluid from abdomen or lungs, controlling vomiting, or managing obstructions. There will also be those who need hydration, pain control etc...Many reasons really.

It tends to be slightly busier than a hospice, and the atmosphere and pace a bit "faster".

Hospices are also used for symptom control, and for managing pain, as well as end of life care. They have other functions, so not solely this. But, they tend to be a lot more "peaceful", and concentrate on the person as a whole (including spiritual care), whereas the oncology ward may not have the resources or time to look beyond the "physical" problem.

The best thing to do is to visit the hospice and get a feel for it. If your sister is well enough, she could go too. Also, it depends on the reasons for going there. If she is transferred to the oncology ward, then they may be able to chat with you about where the best place for your sister is.

Hospices are not just a place for end of life care -they also provide respite, and sometimes it is just the tonic to get folk back to a place where they feel better and stronger. Every patient is different. Most people have a very positive experience there.

hope this helps,

Jeni.

[Louise123]

Hi,

My sister sadly passed away last Tuesday morning at 8.15am. She was at home which is where she wanted to be as her home and family meant so much to her. We are all devastated and shocked.

She was seen by the oncology specialist on the Tuesday of the week before who told us she had missed the window for cemo and that she had upwards of 2 weeks to live and exactly one week to the day after that appointement she had passed away. It was 7 weeks after we took her to A & E feeling unwell and with pains on 27th December 2011 and she had been complaining to her GPs about pains and various symptoms since spring 2010 but nothing of any real significance was done. She even had an earlier visit to A & E where she was made to feel like she was wasting their time. Janice didn't like to make a fuss or be a burden but perhaps if she's shouted louder they may have detected and diagnosed it earlier. The NHS failed her at various stages of her illness.

I cannot urge enough people to raise awareness of pancreatic cancer, how agressive it is and how it goes undetected in so many until it is too late to provide any treatment. It is a cancer that doesn't play fair and give many people a chance to fight it. I was astonished to read that pancreatic cancer receives as little as 1% of cancer research funds. This needs to increase so that others can be helped in the future and more fundraising needs to be done.

I am please I got to spend the last few days of her life with her before she quickly deteriorated, those days will laways be very precious.

We all love and miss Janice and I for one will think about her every single day xxx

[pauline]

Hi Louise

I'm so sorry for the loss of Janice

my thoughts are with you at this time

sending all my love and hugs to you

love Pauline XXXXX

[margb5343]

Hi Louise

I am so sorry to hear about your sister Janice. I feel so sorry for you as I have been through the same with my mum passing away 3 weeks ago and unfortunately it doesnt get any easier for us. Like you say this disease just does not have enough funding. We managed to raise nearly £500 for pancreatic cancer at my mums funeral and I am definately going to try and raise more for this terrible disease.

I am thinking of you all.

love margaret

xxx

[deb68]

Dear Louise

I was so sorry to read about your sister's death and I totally understand your frustration and disbelief at the lack of awareness and funding for pancreatic cancer.

I lost my 27 year old daughter last August after months of 'vagueness' and unexplained symptoms - it has shattered our family and I wanted to send you lots of love.

Debbie.xxxx

[millyjo]

Hello Louise,

So sorry to here the tragic news of your loss.

Yet another tragic victim of this unforgiving disease.

Am thinking of you.

love

Millyjo xx

[PCUK Nurse Jeni]

Hi Louise,

Please accept my condolences at this sad time.

Jeni.

[ladywood]

Hi Louise, I am so sorry to hear about your sister, my thoughts are with you. My own sister died on 2nd feb and we are all devastated. They were a similar age too, Linda was 58 when she died. She also had been unwell for some time before she was finally admitted to hospital at the end of november. Sadly we were never able to bring her home which she so wanted and that upsets us a great deal. I'm so glad Janice was able to be at home with her family. you are right this is such a cruel discease. Take care. Marie

[lynbo]

Hi Louise

Sorry to hear about your sister.

Everything you said in your last post i totally agree.

When i lost my husband last year (39) we knew mothing about PC.

only that he was unwell from April, went to GP 4 times and A&E 3, and was told he had helio bactor pylori, then IBS?

When they diagnosed PC on June 30th, he went 7 through 7 weeks of pain and suffering, and passed away 23rd Aug 2010.

I am taking part in 'striving for survival' details on this site.

I printed off the pack and sponsor forms.

There is an A4 sheet telling you about the low survival rate of this cancer, and how its gets 1% funding!

So.... I have, with permission, put it up in all shops in my area! So people are aware, when they give to cancer, what the stats are.

And because of my brave husband ive got lots of sponsors already.

Also i raised £1500 last Nov on PC week

If you check the forum, the moderator kindly put the link on to the article covered by our local paper.

Sorry for any typing errors its 1.45am.

Im thinking of you, can understand your anger, frustration.

Keep in touch with people on here, they are an amazing bunch.

Much love to you

Lynbo

Xxxxxxx

[Louise123]

Thank you to everyone who has replied to my posts. I havent been able to log on to read them (for fear of being too upset to read them) until now, approximatley a month after my sisters death. We raised £1000 for pancreatic cancer at her funeral but unfortunatley the church take half of this (its common practice apparently). As a family, many of are going to continue to help to raise money for pancreatic cancer so that perhaps others will benefit in some way. I still can't believe that only 7 weeks since I took her to A & E with pains she died - the shock, disbelief and sadness will be with me for a long time to come.

Thank you to everyone who has taken the time the post messages

Louise xx

[Louise123]

Thanks Lymbo,

Im am so very sorry and understand a little of what you went through. It is truely an awful disease and doesn't give anyone a chance.

Thank you for your advice about fund raising, I'll look at it in more detail. First of all, I'm hoping to do the Jane Thomlinson run which is a well known run in Yorkshire. Jane lived not far from me in Yorkshire and sadly died of cancer a few yeards ago but managed to run marathons while terminally ill in order to raise millions for charitiy.

Thank you so much again for taking the time to reply to me and try to stay stong and keep up the good work fundraising - it will help others in the furture xxxx

[lynbo]

Hi Louise

Im going to do as much as i can to raise money and awareness.

I know like you, that early diagnosis is the key.

Take care xxx

Lynne

[lawalsh]

Dear Louise,

I am so sorry to hear your story, and so sorry you have lost your sister. Sending you lots of love and strength, you must be so shocked and saddened, we are thinking of you. Stay on this site as so many have after losing their loved ones, it does offer comfort in the times you wonder what on earth it is all about.

I also read the lady 'Debbie' lost her 27 year old daughter, my goodness, you don't ever expect to out live your child, so sad, just like Juliana's dad having to post on here after the loss of his daughter.

I'm thinking of you all, God bless xxx

[Ellie]

Dear Louise

So very sorry to hear your sister has lost her fight, in such a short time after diagnosis.

Sending you my sincere condolences.

Ellie

x