A forum for advanced pancreatic cancer issues

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Mollypawpaw
Posts: 3
Joined: Thu Apr 06, 2017 6:16 am

Help..I don't know what I don't know!

Postby Mollypawpaw » Fri Apr 07, 2017 8:00 pm

My mumma has just been diagnosed with advanced pancreatic cancer.
T4 N1 M0 Stage 3

She has had CT scan and in Lymph nodes and local blood vessels. she has fluid in the tummy cavity which is another indicator it's advanced.

We have a biopsy and oncologist appointment. We have been told Chemotherapy and she is fit to go for 4 strain?

We have been told months to live? Do people live longer?

This all happened today, it's a bit dream like as my mum is so well and normal.

Reading through threads I am overwhelmed to be honest!

Do I need to research a clinical trial? Who do I ask? Should I seek a second opinion?

All I can think of is can I take her on holiday with her grandkids if she is having chemo?

I don't know what I don't know and I need to know (downside of being a control freak!)

Thanks in advance for any advice, it's much appreciated x

patrigib
Posts: 40
Joined: Sat Mar 05, 2016 7:53 pm

Re: Help..I don't know what I don't know!

Postby patrigib » Fri Apr 07, 2017 8:33 pm

My husband was diagnosed Sept 2014 stage 4, liver mets. On chemo since then. Now decreasing but had a good quality of life.
You never know how it will be. each case is different, but it's hard, both for the patient and the caregiver.

sandraW
Posts: 1027
Joined: Thu Oct 31, 2013 5:38 pm

Re: Help..I don't know what I don't know!

Postby sandraW » Fri Apr 07, 2017 9:25 pm

Hi Molly,
Welcome to the place no one wants to be but where you will get lots of help and support.
Our wonderful nurses will be able to answer most of your questions, but they are not available now until Monday morning, they are very helpful and very approachable.
I am a control freak too so I understand just how you feel.
Its good that Mum is well and that she has been offered chemotherapy, it can be a hard regime but results can be good and it can help with symptoms too.
Every patient is different so we can't tell you what will happen with your mum, people often do live longer, but sometimes they don't do so well either.
My husband had a 5 month break from chemo and we had two separate holidays with our grandchildren.
My advice would be to push for appointments for the CT etc as sometimes it takes an age to get
one, and speak to the nurses.
I know I have not really given you the answers you wanted, but I just wanted to reply to you. I hope you have a reasonably relaxed weekend, and let us know how you and your Mum are doing, take care love sandrax xx

Mollypawpaw
Posts: 3
Joined: Thu Apr 06, 2017 6:16 am

Re: Help..I don't know what I don't know!

Postby Mollypawpaw » Fri Apr 07, 2017 9:40 pm

Thanks so much for replying xxx

Marmalade

Re: Help..I don't know what I don't know!

Postby Marmalade » Sun Apr 09, 2017 6:39 pm

Hi Molly,

Doctors are not infallible but they are jolly useful and most are in the business of helping the patient to achieve the best quality and length of life that they can so initially I would say let the medical team come up with a plan and then you can discuss it with them and ask all the questions about trials and going on holiday etc. write your questions down no matter how random they are and take them with you. My advice would always be if your Mum wants to go on holiday or do anything special then do it now while she is well, don't put things off because PC is a life limiting disease for which there is no cure as yet. Life expectancy is variable depending on age, level of fitness, other medical conditions and the stage and type of tumour, there is more than on type of pancreatic cancer and they behave differently and require different treatment approaches. It is also a very unpredictable disease, we call it the roller coaster because it can be very down and then be up again which is why I say do the things you want to do, if your Mum stays well you can do them again later or have some new adventures.

Please ask your Mums doctors for a form DS1500 if you don't already have one and get it to MacMillan Finance (the doctor or hospital will have the number) they will arrange for your Mum to have the full attendance allowance or other state benefits from the date of diagnosis. Do this now even though your Mum is well, it is her right and it may help later on when she needs more support. You should also speak to your GP about palliative care and local hospice teams. These organisations run courses and give support to patient and carers, its a good way of learning how to support someone who is having cancer treatment and they will cover diet, pain control, the effects of chemo, emotional support and many other things. These things are never wasted and can make a huge difference to everyones confidence, its hard to know how to help and these courses are brilliant for that. They also have lots of groups and relaxation therapy for the patient. I would encourage you to give it a try, it is not an admission of defeat, and does not mean that you can't have life extending treatment, it is great preparation for supporting a loved one and meeting others with loads of knowledge and experience.

I wish you and your Mum good luck and hope you soon get some of the answers you need.

Maralade xx

Mollypawpaw
Posts: 3
Joined: Thu Apr 06, 2017 6:16 am

Re: Help..I don't know what I don't know!

Postby Mollypawpaw » Fri Apr 21, 2017 8:36 pm

Thanks sooooooooo much for that reply Maralade, it's really helped x

Marmalade

Re: Help..I don't know what I don't know!

Postby Marmalade » Sun Apr 23, 2017 6:49 pm

No problem Molly, its what we are all here for, to share our experiences and tips and sometimes just to share our joys and fears. Please do let us know how Mum is going on and how you are and don't be afraid to ring the nurses if you or Mum are worried or need something explained.

Marmalade x