Is this normal ?

[Alice 44]

My lovely fit healthy 64 year old mum , was diagnosed with PC 4 weeks ago.

I really want to know if the way she has been treated over the last 4 weeks is typical or whether she has been incredibly unlucky .

Firstly , she was given the diagnosis over the phone , whilst alone , she was told her pancreatic cancer was inoperable and had spread ( still don't know where too ) her doctor told her the only care she would require would be palliative.

In the 4 weeks she has gone for a further CT scan , a biopsy but has only seen a consultant once ( this was about week 2 )

Her doctor didn't contact the local palliative nurse/ hospice until last week !

So until the local palliative nurse arrived she has been reliant on the local GP ( v poor ) and emergency doctors from the local hospital , who have been playing around with drug combinations to try and ease the pain and her hugely swollen tummy

Her decline in the last 4 weeks has been big, she is finding it very hard to eat , and is already in a lot of pain and has already been given morphine patches

It does feel like the local consultant at the hospice and nurses are now looking after her . She visited a consultant today who is sending her for a scan on Thursday to check whether here swollen tummy is liquid rather than the constipation the GP said , however it feels like she has had the most shoddy medical support over what is obviously such a stressful time for her. She is obviously feeling very weak , still in shock and is not of the generation that likes to jump up and down and make a fuss -

Has anyone experienced anything similar ?

Is there anything I should do to get her better support / treatment ?

I have already found this forum very informative over these horrible last 4 weeks -

[Sones]

Hi Alice

I am so sorry to hear about your mums diagnosis and the horrible uncaring response she has had from the medical profession. You ask if this is normal and I can only speak for myself. It took over two years of visiting my G.P begging for help with the pain I was having plus other symptons associate with PC before I was finally diagnosed. I was told by a gastro consultant that I had IBS and needed to learn to live with it, this was without any examination. I did write a letter of complaint to my GP surgery but can't say it achieved anything other than it made me feel better telling them how I felt. However, I was eventually referred to a lovely consultant in London who was very caring and since moving I have been lucky to have found another very caring oncologist.

I think your mum's experience is absolutely disgusting and unfortunately I think it is quite common. I know what you mean about being from a generation who don't like to complain but it sounds like your mum needs someone to advocate on her behalf and let senior management at your mum's surgery know how she has been treated. Hopefully this will stop the next person being treated the same way. Support team will be able to tell you how you can register a formal complaint.

Its good to hear that your mum is now recieving appropriate care from the hospice consultant.

My heart goes out to you both.

Sue.x

[Morwenna]

Hi Alice

So sorry to hear your mum has this awful cancer, my dad was diagnosed 6 weeks ago, he is 62 and has always been so fit and healthy, it's such a shock isn't it!? I was furious with the way my dad was treated in the beginning, he had terrible jaundice so went into hospital to have a stent put in his bile duct, we just thought it was blocked by a cyst or something at this point, when he was in recovery a doctor came round and asked him if he'd been having chemotherapy!!! We brushed it off thinking he'd got muddled. The next day my dad went to his gp for another sick note and was told then that he had PC, no more detail than that, and this was a friday so we spent the weekend reeling, not knowing if it was operable etc.. I took it upon myself to ring the hospital on the Monday and managed to speak to an upper GI nurse/Clinical nurse specialist (CNS) they were a great help and have been our first line of contact since. Although I have to say this website and forum has been a wealth of knowledge and invaluable support. Jeni and Dianne from the support team will be of great help with what you should do next.

Good luck, big hugs to you and your mum

Morwenna

[Alice 44]

Thanks for your words of support . It is all very shocking and all consuming for me , so I can hardly bear to think about how my poor mum is feeling.

I really don't want this to happen to anyone else at her GP 's practice , so I think your advice regarding a formal letter to senior management is a good plan . She also does not want to see / be on her current GP s register , but presumably it will be easy for her to swap to another doctor she trusts at the practice ?

A number of you writing on this forum talk about having support from a dietician . The odd selection of people that have seen my mum have ALL said not to worry about not eating - which I felt was bizzare - ( actually bar the hospice nurse ) so she is way behind sorting out nutrition and has dropped an enormous amount of weight . It has been a complete breakthrough since Xmas as she has started having banana milk shakes and finally ( again through the palliative nurse ) creons - her doctor said she shouldn't have then . ARGH !

My worst fears are that she hasn't been offered this support because she is already so ill -

Once again thanks for support

[DRAD3]

Hi Alice

So sorry to hear of your mum's diagnosis and the awful care she has received so far. Unfortunately it is not an unfamiliar story. It is a difficult disease to diagnose and can often be mistaken for other things. My husband, like many others had various symptoms which he ignored and was only diagnosed when admitted to hospital with severe jaundice - by then, it was too late and he was told it was terminal. His GP was, although very kind and eager to help, not too knowledgeable about PC and the team at the local cancer centre who treated him were wonderful, but again, I always felt they never quite knew what they were dealing with and how things would progress. With the help of Jeni on the support team at PCUK, I was constantly searching for information and advice to somehow get ahead of the beastly thing, to second guess it. I can see that you want to do the same thing - I am glad you found this site - PCUK are fantastic and will help all they can I am sure. I know it is an absolute nightmare and I so wish I could help in a practical way but know that you are not alone and someone here will always be available to try and help and hopefully offer you much needed support. I do hope that your mum gets the help she needs. The palliative care teams are absolutely wonderful so do take advantage of everything they can offer you - they are a good go-between you and the GP (if things are difficult). Do keep us posted. Sending you love and strength.

Deb

x

[PCUK Nurse Dianne]

Hi Alice,

I am so sorry to hear of your mother's recent diagnosis and that your mother has had to endure this sort of treatment. Certainly not the ideal way to be told of her diagnosis or managed. I will email you with some suggestions for the way forward and how to access some appropriate treatment.

Kind regards,

Dianne

Support Team

[susikus]

Hi Alice

I agree with all that has been said - your mum's diagnosis and care since could have been handled so much better. I am sure most of us could think of ways our care could have been improved but your poor mum does seem to have been particularly badly served. Does your mum have someone who will act on her behalf - your dad? You? That person needs not to feel apologetic about asking, asking, asking. A strong person on your side is invaluable in getting the best quality care and treatment. I hope your mum is more comfortable very soon.

with love

Sue

xxx

[jamescotterell]

Hi alice

yes unfortunately it's quite common. Took us 3 weeks just to see an oncologist for my step dad and that was private! for a disease like PC that's ridiculous! Can't believe they said not to worry about eating! that's the most importnat thing! sounds like you're getting on top of that so well done. To get anything done you really have to take things into your own hands and fight all the way....

Agree with what's been said here...the support team are great...we had a lot of help from jeni in particular...

by the way if your interested in another option for your mother then send me an email 9sipport team will give you the address)....palliative care is not the only option even if it is metastatic.... i wouldn't give up!

all the best!

james

[Alice 44]

Thanks for all your messages of support they are very kind.

[louiepc]

Hi Alice

I am so very sorry to hear of your mum's diagnosis. The way she has been treated is really unacceptable. My mum was mucked about by the doctors and both her and my dad were of the opinion that if they complained they would be ignored. I have discovered, rather sadly, that if you do not ask, ask and ask again, nothing gets done.

You should definately be changing your mum's GP, this person needs to be someone that you can both trust and know that will be on your side. Get in touch the the hospital, the consultant's secretary and request - firmly - a meeting, you need to know the medical position that your mum is in, if there is any alternative than pallative care. Chemo?

Take notes, make a list of questions, before your speak to the doctors, last thing you want to do is suddenly forget what you wanted to say when you get their precious time.

Good luck xxx

[ali]

Hi. Alice

I agree with all the above advice

Yes,you have to actively keep asking for answers-- be firm

Unfortunately care and time scales for tests etc.vary greatly over the UK

Take care

Helen

Hi Louie

I hope you are doing ok

I posted recently to you,I remembered the time of year for you and your family

Helen