New to this - any support gratefully received

[lisa42]

Good evening everyone. My 74 year old mom was diagnosed with a 3cm tumour in her pancreas last Thursday, and has been in hospital since then. I'm devastated by the news, and scared of the new pains and feelings she experiencing. She has been told that it is operable but I'm scared to believe this until the specialists at the hospital she will be moved to confirm this. In the days she has been in hospital she has lost an unbelievable amount of weight, and really aged. This time last week she was running around with my 3 year old daughter, and working at our local hospice. She has a drain in at the moment to let the bile out, and there has been gallons of the stuff, but it seems to have slown down now, but she is getting terrible acid indigestion and feeling nauseous.

Any comments or shared experiences to help me through the coming weeks and months will be welcomed. Thank you.

[Didge]

Welcome to the forum, Lisa, but sorry you have to be here! I'm hoping your mum's move to the specialist hospital will be more or less immediate. if not, push for this as time is of the essence with operable tumours. But it's good news that it looks like it's operable as this is the only way to cure this thing so I'm keeping my fingers crossed for you. You will find lots of support here for the good and the bad times ahead.

[lisa42]

Thank you for your reply. I'm hoping she will be moved by the weekend at the latest. Such worrying times.

[jules 2015]

I am so sorry to hear your news but you have definitely come to the right place for some sport,

I know how scarey this disease can be having lost my dad to pc in Nov but would encourage you to carry out all the research you can do to give you more time with your mum, my heart goes out too you. Try to keep strong and post on here as often as you need to, your forum family will be here to help as best we can

Julie x

[Cathy]

Hi Lisa

I'm sorry to hear of your news but so good to hear that they think your Mum is operable. This is hopefull news indeed.

There is a lot of information already on this forum with some people here who have had operable PC (pancreatic cancer). Also the support nurses here are very supportive and a mine of useful inforation and tips. You can email them on support@pancreaticcancer.org.uk

All the very best

Cathy xxx

[sandraW]

Hi Lisa,

Welcome to the forum,my husband had a sub=total pancretectomy in September last year, his tumour/cyst was in the tail of his pancreas, so he had his spleen removed too, but he didn't have the problem with bile that your mum has. He is 67 and was in hospital for just 7 days, he took it easy but was out pottering the garden after 4 weeks. He has just finished 12 cycles of chemotherapy, half way through we found there was spread to his liver, so 2 more drugs were added to his chemo, we are now waiting the results of his scan. I hope your mum gets moved to the other hospital soon but I know they can't do anything, until they get the levels right with the bile, and gets her operation soon.take care sandrax

[Guest]

Hi Lisa,

Like others have said, sorry are here. It's horrible posting for the first time isn't it? I will give you the advice that people gave me when I first joined here. Ask questions. Don't be afraid to question them. Buy a notebook, and take it with you everywhere. If you think of a question, write it down and then ask it. Doctors/oncologists, just tend to give you the basic news. They don't want to go into the whats and hows and ifs and buts. Ask. You'll be pleased you did.

xx

[lisa42]

Thank you to all that have replied. I'm so glad i found this site. I'm finding it be a great source of information and comfort. Good to know you're not alone when the demons arrive !

[LMD]

Just to say hi - like you I'm fairly new to posting on here too. (Since we found out my father has PC I have been reading lots on here though - this forum is so helpful)

Sorry to hear of your mums diagnosis - how is she now? Hopefully when the bile level has improved, she will feel better...

Advice wise, I would reiterate what others have said, plus try to take each day at a time.

xxx

[Janiebobs]

Good luck to you and your mum. This forum is very informative and excellent support network. PC is so nasty I m so pleased they have found it in time with your Mum

Jane

[lisa42]

I would be grateful of any experiences from you all when first diagnosed. Am I alone in feeling that things just aren't moving quickly enough? I was told by a staff nurse today that my mom wouldn't be looked at as a priority because of her age, and then given a story of someone much more deserving because she was 37 with 2 young children. I came away from hospital today feeling as though my mom had been written off. I was then told by a doctor ( qualified for 7 months) that the doctor that had diagnosed mom ( a man in his 60's who is considered an expert) that he should never have said that mom was operable, as that was up to a surgeon to decide. A very emotional day, that has left me feeling that I can't believe anyone.

[Guest]

Hi Lisa,

Your post does anger me. It is absolutely disgusting what you have been through today. As if it isn't enough that your mum has cancer. I'm sorry you have been treated that way.

My dad was told, alone, that he had a dark shadow on his stomach. We were both told, by his oncologist that it was pancreatic cancer that had spread to his liver. That was a shock. His oncologist did apologise for the way he told us, as he thought we already knew. Up to being diagnosed, it took months. No one cared. I have no faith in the medical profession. My dad is taking part in a trial, and the research nurse is the only person I feel I can safely turn to. Poor man isn't even a doctor, and yet he will pass all my queries on.

I don't think they are moving fast enough for your mum. I think you need to make some phone calls tomorrow and get your mum a oncologist for starters. You need someone who can answer your questions. Pancreatic cancer doesn't have time to waste.

Good luck, please keep posting.

xx

Just something to add here. When my father in law was 77. He got prostrate cancer. The hospital told him he had no hope and best not to have treatment. Other words, too old! My mother in law demanded he have treatment. I know it is a completely different cancer, but he is 82 now, and has been in remission for 3 years.

[Janiebobs]

My dad's PC journey began just before Christmas when I collected him and Mam to come and stay with me, he was very jaundiced so I took him to my local walk-in centre and from there he was admitted to hospital. He had scan on Christmas Eve but discharged him without telling us anything but with a letter for his GP who we saw in New Year. All this meant diagnoses and seeing various consultants was delayed. His gastro consultant was negative gave dad diagnosis of advanced PC and stated he thought Dad was too frail for Chemo. We asked for a stent to drain bilirubin (just because what we had gleaned from this site) and when that was being fitted he had a biopsy which was negative. My Dad wanted a second opinion and he saw an oncologist and urologist who have both implied age doesn't come into it he has a right to nhs treatment (I think more right as he contributed all his life)

One consultant in mdt meeting had suggested operating on dad to see if could remove tumor But oconologist advised against as very serious op and dad is very frail .

My Dad has been very lucky with his Nhs care both when in my local hospital and in his own area. He is not in pain, using creon with meals has led to putting a bit of weight back on. The chemo has resulted in cellulitis in his lower leg which is a still a worry.

I have found the information I have got from this site invaluable and as we have seen many times PC is difficult to diagnose

Jane

[Didge]

My partner was finally diagnosed by his GP after a CT scan. he then chose his hospital, one of the specialist centres you can find on this site, asked his GP to refer him and then phoned the hospital every day to try to get an appointment. He got it 2 weeks later which was a week too long in our opinion. The surgeon decided it was operable but if he'd been diagnosed earlier it would not have spread to the lymph nodes. It was undiagnosed for a couple of years after symptoms started and it took a few months after severe pain started before GP finally thought 'pancreas' even though his mother had died from the same thing. You really need to get the MDT team at a specialist centre to consider your mum as soon as possible. This will need chasing them every day!

[lisa42]

Thank you. Your responses empowered me to take control instead of waiting on hospitals decision. Mom has an appointment on Friday at XX in xx , and I am going to insist they discharge her from hospital this week with a district nurse, as they only have her in to flush her drain 4 times each day (she has a bile drain in), and most days they only do it twice. At least if she's home she can have proper rest and food.

[PCUK Nurse Jeni]

Hi Lisa,

Thanks for your posts on the forum.

I just wanted top pick up on the comment made to you about your mothers age. The NHS is not an ageist organisation, neither is it allowed to be selective in what treatment it provides based on someone's age. All patients who are fit enough will get the treatment suitable for that condition, and this is usually decided by how fit that person is (based on specific grading scales), and what other illnesses that person has, which might affect their fitness for a major operation, or chemotherapy, for example. So, all of these things need consideration. It should not ever be based on a persons age. There are people of 80 years who are fitter than some 60 year olds, simply because they have no other illnesses. 74 is not too old for treatment these days provided your mum is fit.

Also, these decisions cannot be made at a local level, and need referring to a Specialist MDT (Multi-disciplinary team) meeting. Only when all of these experts decide together on an outcome can this be put into place, so the young doctor was not wrong when he said the surgeon would decide. Actually, it is more than the surgeon - many other specialists consider the case together with the surgeon, and a JOINT decision is made.

I would encourage you to discuss why this comment was made about your mothers age, as it is incorrect, and not something which should be repeated to others. Perhaps have a word with the ward manager, or department head, and ask them to clarify this for you, Lisa. That way, if the person who made the comment is properly informed, then hopefully, another family will not get told this.

I hope this helps?

Kind regards,

Jeni, Support Team.

[lisa42]

Thank you Jeni. There have been so many awful things happen while mom is in the hospital, that we are losing count. Unfortunately our local hospital leaves a lot to be desired, most of it not the nursing staffs fault, but a few of them should really not be in the caring profession !! Still - at least it's given mom something to moan about

[lisa42]

Quick update , and again, anyone's experiences please. Mom has finally been discharged from our local hospital after they have managed to get an internal drain working for her bile. The jaundice is fading slowly. We had an appointment on Friday 16th at {Hospital name removed - moderator} where we met with a surgeon and a lovely support nurse. Mom is booked in for surgery on 26th June. She is due to have a pancreatoduodenectomy. My concerns now are, she was diagnosed on 23rd April, and had CT images on 1st May, and to me that seems like such a long time from diagnosis to surgery. I'm so worried that the tumour will have changed by the time they operate, and that it won't be possible to remove. Am I being unreasonable in my fears?

[sandraW]

Hi there,

No you are not being unreasonable, its your Mum and you want her to have the op tomorrow, of course you do, but I suppose the surgeons are so busy, and they will need to be sure the jaundice is at the correct level before they can operate, as it does take time.

My husband went for an ultrasound scan on his gall bladder on the 1st May last year, they found a cyst? on the tail of his pancreas, we waited 13 weeks to see a consultant, and a further 3 weeks for a CT scan, then things moved faster and he was operated on 3 weeks later, the 11 th September, he had a sub total pancretectamy removing 2/3 rds of the tail end of his pancreas and his spleen. take care sandrax