Confused and don't want to give up hope

[Willow]

In February my wonderful Mum was admitted to hospital with jaundice caused by gallstones but after nearly three weeks and a transfer to a specialist hospital our worst fears were confirmed and she was diagnosed with pancreatic cancer. Since that time she has had an endoscopy with a stent placement, two blood transfusions, and worst of all an aborted Whipple procedure as cancer spots were found on the liver.

Chemotherapy was due to start one month after the failed operation but when Mum went for her appointment with the oncologist he effectively said there was no point in having chemo as it would only help to relieve the symptoms of the cancer and not prolong her life at all. She could have it if she wanted but at the time Mum was relatively symptom free and saw no point in putting herself through it and potentially feeling much worse. Worryingly, during these past few weeks she has developed a swollen tummy and very swollen legs, she has terrible heartburn, indigestion and nausea and is experiencing pain at night. She has no appetite at all and has lost an awful amount of weight.

Every time our hopes have been raised by the possibility of treatment they've come crashing down around us again and it feels like there's no hope left any more. I'm really confused because I'm reading stories on here where peoples' lives have been prolonged by chemo and even where metastases have shrunk, making surgery an option. Is there something they're not telling us or should we try and persuade Mum to give chemo a try? I'm scared it might be too late. Is it possible to get the fluid drained so she is more comfortable and perhaps able to move around more easily and be able to eat more? I feel so helpless and desperately want to do something to help Mum.

My thoughts are with you all going through this dreadful journey.

[KATB]

Willow was there no other reason given for not offering chemo? Chemo really helped my dad - his appetite got much better and his quality of life was much improved. He was getting out and about and living pretty normally. I think I would push for it if you feel she is fit enough and she wants it.

Yes, fluid can be drained and pain can be managed. It's difficult because you do have to be quite proactive, in my experience anyway, but make sure you get help and advice. There's no reason for your mum to suffer like she is.

The PC nurses on this forum are amazing - email them or call and they will give you loads of advice and point your in the right direction for help locally.

K

x

[J_T]

Hi Willow, welcome to the forum and sorry to hear your mum's story.

Agree with KATB. Furthermore, I think I'd be looking to move on to another oncologist. Someone who says 'it would only help to relieve symptoms ..' well, words fail me!

I do hope you can get the help and support you need.

Julia

[Willow]

Thank you for your replies. Yes, that was the only reason given and it was confirmed by an independent conversation with the Macmillan nurse but obviously the situation has changed as Mum does now have symptoms. Mum's attitude at the moment is 'What's the point?' which we're really struggling with as she seems to be just accepting what she's been told and not fighting back at all and gets upset with us if we make suggestions as she feels bullied and confused

[Cathy]

Hi Willow

I'm sorry to hear your Mum is poorly. I'm not surprised she feels confused when the advice she has been given is conflicting.

I can only mrror what KATB and Julia have said which is that chemo can help symptom control and can also zap the cancer a bit as well all being well. There are side effects of treatment which varies between treatments and between people. Doctors are unwilling to give chemo where someone is too ill.

Personally I would look to get a second opinion on treatment (chemo) options - at least that would give your Mum more information for her to make a decision about what she wants to do.

I keep recommending the nurses on this site - either call or email, as they are brilliant and have given me loads of good advice in the past.

best of luck

Cathy x

[KATB]

There is such a thing as 'palliative chemotherapy', which in PC is actually what most chemo is. It doesn't cure but it improves quality of life and hopefully extends it. Obviously we are not clinicians and we don't know what factors your mum's oncologist took into consideration, but from the information you've given here it seems an odd decision.

Do get in touch with the nurses on here - I can't recommend them highly enough.

K

x

[J_T]

Willow, there is a live chat tonight which might prove useful to you. It can be a bit daunting joining in but do take the leap, its very helpful.

Julia