Mum diagnosed with advanced PC - head is in a whirlwind

[jchops]

Hi,

Unfortunately I find myself here due to my mum being diagnosed with advanced PC 2 days ago - the tumour is in the main body of the pancreas and has unfortunately already spread to the liver meaning only palliative care is going to be offered.

My mum is only 61 and has been in good health. She had thyroid cancer 5 years ago but after a full thyroidectomy and radiation treatment she has been all clear since. A few weeks ago she had a bout of severe abdominal pain which her GP gave her antibiotics for as a suspected infection and took blood for testing. She has had no further symptoms since. Following the blood results she was sent for x-rays and that's when something was found. Mum was sent for an MRI Scan last week and then boom, our world has been turned upside down.

A liver biopsy has been scheduled for next week to determine the type of tumour so a treatment plan can then be put together. My mum however is undecided as to whether or not to go through with this when we have already been told that her outlook is approximately up to 12 months and chemo treatment could possibly give her an extra 3 months. There was however indication that it is possible the outlook could be a few years. Trying to digest all of the information however this has been difficult - it's been such a whirlwind 2 days and my head is in a daze (nothing compared to my poor mum).

My mum is of the mindset that she would rather have quality time over quantity of time, particularly in the case of an extra 3 months and I totally respect her decision with regards to chemo/treatment. I am however trying to ensure she has all of the information possible to make an informed decision with regards to going through the liver biopsy or not.

Has anyone experienced the refusal of any further investigations and no treatment journey? How was/is that?

Can anyone tell me anything more about the biopsy experience/journey and then declining any further treatment?

My mum is also the primary caregiver (as well as working full time, although she has now been given a sick note) for my nan and step father. My nan has COPD, chronic asthma, osteoarthritis amongst other old age associated issues and is pretty much immobile. Her health is up and down constantly and the biggest challenge is dealing with her "behaviour". She is depressed and frustrated but refuses to consider anything that is suggested to help her deal with that. She is therefore very difficult to deal with and very demanding.

My stepfather has had so many health problems and is so ill that I honestly don't know how he is still alive. He suffered from a blood condition 7 years ago and still has to have a yearly dose of chemo but he has all manor of issues that have stemmed from this. His mental health also seems to be deteriorating so again he is becoming more of a challenge and this is only going to get worse.

I work full time, have two young children so helping give care to the two additional family members will be difficult. My husband is self employed, sometimes working 7 days a week so I don't want to drag a 7 and 4 year old along with me to see all of that as well. Although I feel bad for saying it, my priority is my mum and ensuring she gets to enjoy what time she has and to care for her when things go downhill so I feel they need to go into a home. A letter is already being sent to our social services but the GP intimated that they will simply assess the situation and if mum is still in good health at present they will leave her to continue to care for them until she is not. I don't agree or want this. Does anyone have any advice or experience they can share with regards to this kind of situation?

I just want to help her make the best decision for her but there is so much information and my emotions are so all over the place at the moment that I am drowning in it all. We are beyond devastated by this news, it's just so unfair.

Sorry for such a long winded post, I'm just a little lost and feeling so sad at the moment.

Thank you

[sandraW]

Hi Jchops, What a truly difficult position you find yourself in. I can understand your Mum being your priority, and of course she must be. PC is a life limiting disease and its totally unfair if Social Services don't or won't provide help with your Grandparents, I cared for my Mum she was 86 when she died so I totally understand when you describe their behaviours. Mum will have to just go to pieces, when social services come and tell them that she needs help NOW. In these cases sometimes that's what needs to happen, otherwise they will just let her get on with it, your Mum can then still give them support when she is able, but she does need to think about herself.

I would think your Mum would be offered treatment, as she is as you say a fit 61 year old chemotherapy is hard but it gave my husband a good quality of life for 18 months.

You Mum will also be entitled to benefits as PC is a life limiting disease, perhaps try contacting Macmillan, they can help you sort out financial things too as well as giving help and support.

Our nurses here are also a fabulous support, give them a ring on Monday, they will be able to help

explaining treatment options for you.

I am sure you are feeling lost and sad, it an awful time for you all, I am sending love and strength to you all, take care love sandrax xx

[Veema]

I am so sorry you find yourself here and your circumstances sound tough. I don't know what you can do about your Nan and Stepfather...but I do think as the disease progresses with your mum, whether she has treatment or not, caring for them will be too much for her.

It might be a good idea to read Marmalade's thread 'our journey without chemo' for an insight into how things might progress without treatment, but do bear in mind that every patient is different. If your mum does decide that chemo isn't for her, then hard as that is, you will have to support her in that decision. From my own personal experience, once it has progressed to the liver, it is difficult to treat and for the treatment to have much effect because the liver has such an important job to do and if it's compromised toxins can start to build up which then affect other organs and can also cause confusion etc. That said, there are stories on here of people who have kept liver mets stable for quite some time.

From a practical point of view, get referred to the palliative care team if you haven't already...they are a great resource. She will also be entitled to PIP payments, these are not means tested and pancreatic cancer is a qualifying disease. A blue badge is also a godsend for appointments etc. Personally, I would also get in touch with your local hospice and see what they have to offer...they don't just deal with end of life situations, but offer counselling (which you might benefit from) and group / indvidual sessions, alternative therapies etc. She may also need a dietician...again, get the referral, even if not currently needed then you have it in place when you do. She may also need creon, a replacement digestive enzyme.

I can't help with the liver biopsy, because that's something we never experienced...good luck with it.

Hope that helps a little, if you've anything specific you need to ask, just shout. And the specialist nurses here are a fantastic resource who you can contact during the week by email or telephone.

Vx

[Justamo]

Hello jchops. What a nightmare for you. Being a primary caregiver for two elderly and poorly people is almost a full time job on its own, never mind going to work and running a home. And then to get PC on top of it all. My heart really goes out to you and Mum.

I can only echo what Veema has said about reading Marmalade's thread on how she cared for her beloved Louis during his treatment-free illness. She coped magnificently and sought support from our nurses here on the forum, and all of us family members. Of course it was a dreadful time for her, and it probably still is, because his loss is comparatively recent.

My own husband had 'gentle' chemo, not aggressive treatment. We rejected surgery and Peter had a year of good quality time during which we did all sorts of things. The first two months and the last two months were pretty grim but the year inbetween was OK. In fact it was the closest we have ever been in 40-odd years of marriage and we made the most of every day.

Your mum may find it difficult to relinquish her role as primary caregiver for the two elderly ones, but it is important that she decides for herself what she is able to do. Ask her GP for a referral to the palliative care team; as Veema says they have access to all sorts of resources, both practical and emotional. Social Services will have to step in and help with the elderly ones: it is not a 'failure' on your mum's part if she can't continue their care and make sure she understands that. If necessary do some desk-thumping on mum's behalf. Have a strop about it if you have to, and make it a big one.

You have found one of the best sources of help available - this website. Our nurses are fantastic; they have helped so many of us get through this and they will help you, too. Don't be too influenced by estimations of 'time' left to mum; it's TODAY that counts, not next week. Cherish your time with her, seek help from our nurses, and please post - even if it's only a couple of lines - to let us know how you are getting on. We all care.

Love, Mo

[PCUK Nurse Rachel R]

Dear jchops

Thanks so much for your post, its a big step putting your story out there. Welcome to the forum on behalf of the Nursing team.

I am sorry for Mum's diagnosis of pancreatic cancer.

Both Mum and you sound as if you have an awful lot on your plate and I do hope that you can access the support you need, especially in regards to making decisions regarding future treatment.

I wish Mum all the best as she attends for her liver biopsy.

Please don't hesitate to contact us if you wish to discuss further.

With kind wishes

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[jchops]

Thank you so much for your responses and kind words, it really is a comfort to know I can spill my thoughts and you will kindly offer support.

Since my post I have spoken to one of the nurses here which was great in making a few things clearer in my mind and we managed to convince mum to have the biopsy. We have been for the results this afternoon and unfortunately we got the confirmation we didn't want to hear - it is an metastatic adenocarcinoma with secondary in the liver and nodes. We have her first xx appointment next week to see what treatment plan they suggest (I'm assuming it's going to be folfirinox).

Mum is going to hear the oncologist out as we have asked that she has all the information available before she makes a decision but I'm not convinced she will go with the chemo for such a small increase in life expectancy (consultant gave an approximate 2-3 months extra). Whatever she decides I will support her 100%.

We have been making a bucket list with her to try and get as much in as possible before she becomes too ill. As yet she is still not complaining of any symptoms - she has the creon medication and is tired. We have also noticed that her abdomen is looking more swollen but she is saying there is no discomfort there. I'm petrified of the symptoms and decline coming too quickly.

With regards to my nan and step dad - the local social services visited us a few days ago. They will be putting an urgent referral in for a care package for them both but this is for 6 weeks whilst they assess what needs will be needed thereafter. Personally I would prefer them to be put in residential care as having a carer visit 4 or whatever times a day is not going to stop them putting demands on mum but we will see what happens. I am ready to fight them with all I have if they don't do enough.

Waiting between each appointment is emotionally draining but we are cocktail making this weekend as one of the first activities off the list

[Veema]

Keep an eye on her abdomen...it might be an idea to measure it...fluid (ascites) can build up in and around the abdomen, particularly if the liver is affected.

Vx

[jchops]

Thank you Veema - we definitely are and measuring is a great idea. She is getting a little breathless so I think it is fluid building. She has also admitted to being nauseous and being sick in the morning. I'm keeping a close eye and plan to speak to her GP. x