Feeling Alone

[mogs]

Hi. I just wanted to introduce myself even though I cant still quite believe that I am posting on this forum.

My mum (67) was diagnosed with pancreatic cancer last week, and at the moment I feel as though I am in free fall and just want to hit a pause button. She is never ill (rarely catches a cold) but has been unwell since last October. She had been to see the doctor on several occasions who thought it was a build up of acid in the stomach. Since Christmas she had pain in her side which then moved to her back.

We eventually got her admitted and they run tests and a CT scan. She was told, (by her consultant), that she had a lump on her pancreas and that she was being referred to a specialist team in another hospital (who would write a report). They sent her home with pain relief but no-one mentioned the word cancer. We had a dreadful week trying to get her pain relief under control. Whilst speaking to the doctor about her medication, he let slip that she had pancreatic cancer as he presumed the consultant had told us. Obviously we were all shocked and couldn't quite believe the news. The gp told her it's in the body of the pancreas and inoperable. It has also spread to her ovary. I feel we have been left on our own, (for a week now), to cope with this devastating news. No-one has spoken to my mum at all.

We are meeting with the consultant tomorrow to find out more and hopefully what her options are. My mum is unaware of the survival rates of this awful disease and at the moment I'm struggling with staying strong and hiding what I have read from her. Thankfully I have stumbled across this site and reading your posts have made me realise I am not alone and given me hope. Thank you for that. I have a feeling I may be lending your support in the difficult weeks to come. Its comforting to know there are people like you out there.

[J_T]

Hi mogs and welcome. So sorry to hear of your mums diagnosis. Too often patients feel abandoned, we did, it was only at the insistence of our GP that we finally saw an oncologist so I know how you are feeling.

Hopefully you will have a good meeting tomorrow and your onc will have a plan of action. Not to raise any false hopes but tumours can become operable after a successful course of chemotherapy, fingers crossed your mum is able to undergo treatment and it works well for her. You are lucky to be treated at a specialist centre,they should be on the ball,treatments can vary greatly depending on where you live.

Good luck and keep us posted on your mums progress. Specialist nurses on here will be an invaluable help to you, don't be afraid to contact them if needs be.

Julia x

[Dollysdaughter]

Hi,and firstly I am so sorry that you had to hear the bad news about your mum in such a horribly insensitive way. Its never an easy thing to hear but that must have been just awful for you.

I hope that things will be handled much better for your mum (and you) from here on. You will find that Dianne and Jeni on here will give you amazing help and support as will all the other people who are on this site in such sad circumstances.

I am in a similar position to you, my mum was diagnosed in December after being ill for a long time and being "fobbed off" by her GP. She has just started chemo after having been told her fitness level is not high enough for surgery.

Still in shock really and just facing it a day at a time as I am sure you are.

People on here are amazing and emotionally speaking extremely generous so I am sure you will find here a comforting place to be, take care,

Sara x

[cestrian]

Hi Mogs

Welcome to the forum that never stops giving. I am so sorry to hear of your Mum's diagnosis and the insensitive way in which she was informed. Sadly lack of awareness in the GP fraternity is a major factor in our poor treatment of PC which is all too often inoperable by the time conclusive tests are introduced into the equation.

I am glad that I was the first to be told of my diagnosis as I was able to break the news to the rest of my family in my own way. It will be difficult for you to decide what to tell your Mum and when without causing her more distress but what an awful burden for you to bear. Use all the resources you are able to find to spread the load and make sure you have plenty of "me time" - you will need it. MacMillan are great for pain relief and practical help with benefits and equipment when needed and Jeni and Dianne on here are both superb with an unbeatable fund of knowledge to share.

Love and Peace

Mike

[Guest]

Hi,

Sorry you are posting here also. My dad has been recently diagnosed, his is advanced and has spread to his liver, and is also inoperable.

He doesn't know the survival rates either, and I'm thankful he doesn't know anything about the internet for that reason. Apart from the apparent weight loss, he looks and occasionally feels 'normal'.

What I will advise you, from the few week I have had to deal with this, is ask questions. Ask, ask, and ask. Follow everything up. Chase people. Be your mums army.

My dad was diagnosed on the 11th of this month. I am a very shy person, and I do not question anything normally. I like to be int he background, normally.

I have spoke to everyone. No one was rushing anything. Everything was 'tomorrow', or in the 'next few days'. All the time, my dad is so upset, and keeps saying he has this thing growing inside him. I couldn't stand it any longer.

I have spoken to literally everyone. Chasing appointment, getting things moving, asking questions. I have spoke to one of lovely nurses here, Jeni, she has even spoken to my dad. She has privately emailed me and given me advice on what SHOULD be happening. Nothing of which was. I am writing lists, and I have a notebook with me all times.

Basically, don't wait for the tests and appointment to come to you, please, chase everything up.

We are both new to this, and I am available anytime for advice, or just for a chat, should you need it. You are not alone.

Leila xx

[nikkis]

Hi there,

Welcome to the forum, well done for posting, but so sorry to hear your mum has had this diagnosis. My advice would be to ask for a referral to your local Macmillan or hospice nurse at some point, as they are the experts about pain, and will be able to offer lots of support and advice to you both. Your mum's GPs should know who covers her area or you can ring the Macmillan help line.

Hope it all goes well tomorrow,

nikki

[jay]

Hi Mogs and welcome to the forum.

Hope everything goes well tomorrow.

Jayne x

[EmmaR]

Hi Mogs ,

Don't feel alone because you are not by coming on this forum you have joined a wonderful family who will listen to you , advise you , with heartfelt passion hard to find anywhere else stay strong and let us know how you and you mum are doing .

EmmaR x

[Cathy]

Hi Mogs

Along with everyone else, welcome to the forum and so sorry for the reason why you have needed to do so.

You are at the start of what might be a steep learning curve but all of us on here have travelled, or are travelling the same path so don't feel alone and post here when you need to.

As Leila says, I took a notebook with us to every appointment (it was my partner Jonathan who had PC) and also kept a diary after treatment started.

Keep posting. Hopefully, if your Mum is well, she will be able to have some treatment that will help with symptom control and maybe reduce the tumours.

Fingers crossed for your appointment

Cathy xxx

[sandraW]

Hi Mogs,

Welcome to the forum, so sorry to hear about your Mum's diagnosis, its my husband that has PC. It is scary, and what a horrible way to find out. Lets hope when you see the consultant tomorrow you will have better news or at least get some treatment options, take care sandrax

[mogs]

Thank you all so much for your kind words and support. They have really touched me. I will certainly take a notebook this afternoon as i think it's going to be so much to take in. Will let you know how it goes. It's strange because its a meeting I really don't want to go to but on the other hand at least we should know more about what we are facing. Love cara x

[Slewis7313]

Good luck this afternoon Mogs. The notebook is a good idea and we (myself, Wife and Daughters) all agreed it is better to know what you are dealing with to understand how best to attack it.

Keep us posted

Steve

X

[PCUK Nurse Jeni]

Hi Cara,

Welcome to the forums as others have welcomed you in true "forum family" fashion. But as ever, sad that there is another person joining the forum.

Just to echo that I hope the appointment goes well today - have plenty of questions to ask, and ensure that you understand what is being said.

Another tip just to ensure things run smoothly, make sure that you are given another follow up appointment before you leave the hospital, so that you are in the pipeline for future discussion, and not just waiting for one again.

You will get great support from everyone on here - they are a wonderful source of support as you can already see. Anything medical, you can always email us at support@pancreaticcancer.org.uk

Kind regards,

Jeni, Support Team.

[mogs]

Thanks Jeni. I will make sure that we book another appointment this afternoon. Its been a tough week as we're only a small family - myself, mum and dad so I've been trying to do the running around and telephone calls whilst trying to hide it from my two boys for the moment (until we know exactly what we're dealing with). Will keep you posted on how this afternoon goes

Cara x

[Guest]

How did you get on this afternoon Cara?

Leila x

[mogs]

What a frustrating afternoon! I feel like we are going around in circles. Finally met with my mums consultant who basically didnt want to tell us anything but kept saying 'You're better off asking the Oncologist on Monday!' He apologised for the way she had been treated so far and basically blamed the specialist hospital for taking so long! When I asked why someone hadnt spoken to us or why one of the specialist team werent with us this afternoon i was told 'Well they cant do anything so they dont want to see her'.All he has told us is that she will need chemo. When i asked about any nurses to help us with my mums pain relief (as we still dont have this under control) again i was told, they will sort that out next week. I just feel that we are alone dealing with this at the moment and constantly being made to wait. So sorry to rant but feeling very frustrated. I just want to help her as much as i am able to. Thank you so much for asking

Cara x

[janem]

I'm sorry to hear your news I remember when my dad was diagnosed we felt so alone and it seemed to be a long time between appointment. I just want to say good luck and you have come to the right place for support. I thinking of you

Nikki xx

[mogs]

Thanks Nikki. It's comforting to know that this wait is 'normal'. X

[Guest]

Unfortunately Cara, that doesn't shock me anymore. No one seems to put out all the stops, no one seems to want to go that extra mile.

I feel frustrated for you. I know Monday seems such a long way away.

What are you seeing the oncologist for? Has your mum had tests that she is getting results for?

As for the pain, I can't understand why no one is helping there. Does she have any pain relief at all?

Leila xx

[Cathy]

Hi Cara

I am sure that the wait will feel like an eternity. Sometimes not knowing is the hardest thing.

I wonder if there is anything you can do in the meantime to help with pain control. It might be worth a call to her GP tomorrow morning to ask for a prescription if they would do that - when my Jonathan was fist diagnosed he managed pain control with codeine and paracetomol.

Best of luck

Cathy xx

[mogs]

My mum has been given MST and oramorph to take. She also has an anti sickness tablet but I'm not sure of the name. At the moment she is still feeling very sick in the mornings (which means she's not eating) and then in pain during the night. She is only sleeping for a few hours before waking in pain and having to take more medicine. She's also had a few funny episodes where she is sweaty and shaking and feels as if she is going to pass out!

All her test results are now back. Her blood is 'abnormal' and we know the cancer is inoperable and has spread. They've said that she will need chemo and the meeting on Monday is to discuss her treatment (I hope) and hopefully refer her to a community nurse. I'm finding the waiting so frustrating but feeling calmer today.

Cara x

[mogs]

We met with my mams doctor from the cancer hospital yesterday who was baffled as to why she hadnt had a biopsy - especially when the specialist team requested one on Feb 18th. I told him i had spoken to her consultant's secretary (the week previously) to chase this up but was told 'She doesnt need a biopsy. I dont know where you are getting your information from!' We decided to go ahead with the chemo without the biopsy as they are pretty certain it is cancer and we've already been waiting too long. Was this the right thing to do??

Also, we didnt ask/he didnt tell us how long she would have the chemo for. (Cant believe we didnt ask this - I even had it written down!!)They didnt really give her hope yesterday but they didnt really tell her how bad the prognosis was either -which I had been nervous about. We have looked into purchasing Abraxane and are waiting for a quote. The doctor expalined that the benefits are good but the side effects are worse. She wants to try it if possible but im so worried that she's doing so in not realising how how quickly this illness could take effect. I'm really feeling guilty/torn that we may be putting her through all this/make her ill without her realising the prognosis but i dont want to take any hope from her at the moment as she's determined to fight this. Is it normal to feel this way as its constantly going round and round in my head?? Sorry for all the questions x

[MSH]

Hi Mogs,

It's always best to get a biopsy but not always possible. They looked at two biopsies plus the stent brushings in my case without being able to get a tissue diagnosis. If the tumour is in the body of the pancreas it might be difficult to access, but in your Mum's case could they take the biopsy from the ovary? At least that would confirm that this was metastatic disease and hence inoperable or is there other evidence of spread, for example into lymph nodes?

As far as chemotherapy is concerned the best results are from a combination of drugs known as Folfirinox. This is quite a tough regime and isn't for everyone but is usually given fortnightly for a total of twelve courses, though most people can't tolerate the full course of treatment. I'm not quite sure why you're looking at purchasing Abraxane privately, to do so you would need a private prescription. The US authorities have allowed a combination of Gemcitabine and Abraxane but the initial studies show this to be less effective than Folfirinox. The prognosis for metastatic pancreatic cancer is awful with average survival of 11.1 months with Folfirinox and 8.5 months with Gem/Abraxane. These are average responses and of course individual responses do differ.

Has your Mum got the pain issues sorted out? The focus should probably be on her quality of life.

I hope she responds well to her treatment.

Mark

[Didge]

My bf didn't have a biopsy. we were told that the radiologist could tell it was an adenocarcinoma from the scan. But it was operable (just) so they confirmed that afterwards and tested for aggressiveness. I suppose what I'm saying is that it doesn't always need a biopsy to confirm and biopsy results can be misleading anyway. How and what to tell people who aren't asking the questions themselves is a minefield. Like all these decisions you just have to tell yourself that you are making the best decisions you can at the time in very difficult circumstances and try to remember that later on! I think with PC they are tentative about dishing out the statistics unless they are requested. I know with us, the oncologist asked if we were aware of the statistics and we said we were and they just directed us to the Cancer Research UK website if we needed 'accurate' information! I am wishing you luck and am thinking of you in what is always a terrible time.

Didge x

[mogs]

Thank you both for for taking the time to reply. The doctor mentioned the other drug but said that he personally doesn't like it as it's too toxic. I'm just worried about what he's not telling us because she hasn't asked and I don't feel that I can ask when she's there. He's only offered her chemo and without a biopsy. Its in the body of the pancreas, her ovary and there are deposits in her peritoneum as well. He asked if he had her permission to go ahead with the chemo as he/my mum didnt want to delay things any further. However he did tell me to google folfirinox and I will read more on it. I naively thought abraxane would have given her a better chance. It has to be her decision and I will support her in whatever she decides to do but just want her to know all her options. Thank you again both x