A forum for advanced pancreatic cancer issues

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Tinlady
Posts: 9
Joined: Fri May 20, 2016 2:01 pm

Mum recently diagnosed

Postby Tinlady » Sat May 21, 2016 11:32 am

Hi, I'm new to this site but on reading some posts, everyone seems very supportive and well informed on this forum. My mum was diagnosed last week following CT scan, with pancreatic cancer and liver mets. This was a devistating blow, despite her being in her 80's. Although she looks thin at present she is good for her age. She is however, on warfarin, which could be problematic.

She is under the care of the surgical team at present, who are not keen on further treatment. We have asked for her case to go to the MDT meeting but my knowledge of treatments is limited, we know there is no cure but she wants to fight!

Can anyone give any help/advise re treatments and side effects? It would be much appreciated!

boa
Posts: 128
Joined: Thu Jul 09, 2015 1:13 pm

Re: Mum recently diagnosed

Postby boa » Sat May 21, 2016 11:41 am

Hello Tinlady
Really sorry to hear about your Mum. If the tumour is not operable the usual treatment if one is given is chemotherapy. The side effects differ greatly from person to person. If your Mum is being discussed by the MDT they will usually have suggestions to make about what happens next. You will get plenty of support from this forum.
Catherine

Tinlady
Posts: 9
Joined: Fri May 20, 2016 2:01 pm

Re: Mum recently diagnosed

Postby Tinlady » Sat May 21, 2016 12:38 pm

Thanks Catherine, I just get the feeling the surgical team don't think any treatment should be offered. I just hope the Oncologist thinks differently. Clutching at straws maybe?!

It's reassuring to have this support, thank you

boa
Posts: 128
Joined: Thu Jul 09, 2015 1:13 pm

Re: Mum recently diagnosed

Postby boa » Sat May 21, 2016 2:57 pm

Hi again Tinlady, I can't offer advice but I can offer experience. The surgical team will only consider surgery so if your Mum's tumour is inoperable they will leave any further treatment to be considered by the oncology team. In my husband's case apart from the MDT meeting where his case was discussed various teams did not seem to discuss things together. This is not a complaint but I suppose I was surprised that they kept to their specialisms. With hind sight maybe it's not so surprising. So I don't think you are clutching at straws. The process seems to be that once the surgical team feel that they can take things no further the oncology team will get involved. They won't be around today but on Monday it might be worth giving the nurses on this site a ring. They are very helpful. Catherine

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum recently diagnosed

Postby Wife&Mum » Sat May 21, 2016 6:57 pm

Welcome to the Forum Tinlady but I'm sorry to hear about your mother's situation. As Catherine says, I'm sure you will get lots of help and support here.
I hope you find that your Mum can be treated with chemo as it sounds like she wants to give it a go. If it proves too much she can always stop it.
My very best wishes
Wife & Mum

Marmalade

Re: Mum recently diagnosed

Postby Marmalade » Sat May 21, 2016 7:25 pm

Hi Tinlady,

Sorry to hear about your Mum, it's a terrible shock at any age. My 83 year old husband went through the MDT and for us it was a lengthy and not very positive experience. It will all depend on exactly where the tumour is and what other vessels are affected. If blood vessels or arteries are involved surgery is generally ruled out but that can leave other treatments to reduce the tumour or relieve symptoms.

My husband was also on warfarin which is essentially is there to prevent clots. On advice, my husband decided to stop all his 2nd line defence drugs including warfarin, ramipril and simvastatin to clear the way for better symptom management drugs. This reduced the number of trips to have his INR checked etc which also took pressure off him when he was feeling angry about having to keep going to the doctors. It's about managing risks in the face of changing priorities. Until now the priority has been to prevent strokes and heart attacks, now there is something more likely to cause her a serious problem and the priorities have changed. Have a chat with your GP about what your Mums priorities are given this new situation.

Good luck and best wishes to you and your Mum

Tinlady
Posts: 9
Joined: Fri May 20, 2016 2:01 pm

Re: Mum recently diagnosed

Postby Tinlady » Sun May 22, 2016 12:39 am

Thank you so much to everyone for your support and advice. It is a huge comfort to know support is there, and reading previous posts have helped gain greater understanding of a horrible disease!

Tinlady
Posts: 9
Joined: Fri May 20, 2016 2:01 pm

Re: Mum recently diagnosed

Postby Tinlady » Sun May 22, 2016 10:06 am

Hi again. Wonder if anyone can help, my mum hasn't had a biopsy yet. The surgeons thought we should wait until after the MDT meeting due to potential risk, although warfarin stopped and on heparin. I'm just concerned this is wasting time and doesn't give all the information required? Also feel they think my mum is frailer than she actually is, and don't really think she should be considered?!

Sorry for bombardment but all advise gratefully received! Thanks
TL

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum recently diagnosed

Postby sandraW » Sun May 22, 2016 10:29 am

Hi Tinlady,
Welcome to the forum the place no one really wants to be but where you will get lots of support and understanding.
This is a truly horrendous disease and as Boa has already said if surgery is not an option which I think will be the case for your Mum as she already has liver mets, the next step if they think your Mum is well enough will be chemotherapy. The nurses are the people to speak to, they are really lovely and will be able to arm you with lots of information their number is 0808 801 0707.
Has your mum been prescribed Creon yet, this might help with weight loss, the nurses will explain all about that too.
Take care and please let us know how your mum is doing, sandrax x
Last edited by sandraW on Wed Jun 08, 2016 1:19 am, edited 1 time in total.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Mum recently diagnosed

Postby Didge » Sun May 22, 2016 12:12 pm

We were told that the patient has a right to attend the MDT. You could check with the nurses here if in doubt. So if you are worried that your mum's voice will not be heard that might be an option. Biopsies are not always necessary if they are sure of what they are looking at. I can understand your reluctance to accept a 'no treatment ' option but it is a difficult decision. First it will be what your mum wants and then, how well she is thought to be to withstand it. Thinking of you and good luck x

Tinlady
Posts: 9
Joined: Fri May 20, 2016 2:01 pm

Re: Mum recently diagnosed

Postby Tinlady » Mon May 23, 2016 10:22 am

Many thanks for all the useful and very informative advise, and more importantly the kind support. It is greatly appreciated at this aweful time.
I will contact the nurses as suggested, and will keep you posted (pardon the pun!) X

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Mum recently diagnosed

Postby Proud Wife » Tue May 24, 2016 7:08 pm

Hello Tinlady and welcome.

Support is in abundance here on this forum as we all know what you are going through. I only wish we didn't!.

Please let us know how your Mum gets on xx

Tinlady
Posts: 9
Joined: Fri May 20, 2016 2:01 pm

Re: Mum recently diagnosed

Postby Tinlady » Wed Jun 01, 2016 11:40 am

Hi just to update you and another quick question if ok? Mum is finally being given a biopsy next week after a great deal of debate! She is still in hospital, mainly due to erratic blood sugars. She is type 2 but has been insuline dependant for a good few years.

I wondered if anyone has had experience of this, could it be erratic now due to the tumours? How can that be dealt with?
Thanks again all!! X

PCUK Nurse Rachel C
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: Mum recently diagnosed

Postby PCUK Nurse Rachel C » Wed Jun 01, 2016 4:05 pm

Dear Tinlady,

It is good news that Mum is able to have a biopsy, as this means that they can then make an appropriate treatment plan for Mum to move forward with. I’m not sure if you have been told, but it will take approximately 10 days for the biopsy results to be processed and Mum should also have the opportunity for her case to be discussed at the Multidisciplinary Team (MDT) meeting. Hopefully within that time, Mums bloods sugars will be less erratic and more controlled, as this may give the specialist time to monitor and possible change her insulin to meet Mums needs.

Unfortunately, it is not uncommon for some people with type 2 diabetes, who have previously been well controlled to become ‘unstable’ or experience erratic blood sugars at some point, when diagnosed with pancreatic cancer.

Just out of interest, sometimes it’s actually this ‘erraticness’ or inability to control someone’s bloods sugars that leads to a diagnosis of pancreatic cancer.

The pancreas has 2 main functions :
• It makes pancreatic juices containing enzymes that help to break down food so that the body can absorb it.
• The pancreas also produces a number of hormones that enter the body and flow around the bloodstream. The most important of these is insulin, which helps to regulate the amount of sugar in the blood.

So both of these functions can be affected if the pancreas isn't working properly. If you want to read more about this, please do access the link below:

http://www.pancreaticcancer.org.uk/info ... -pancreas/

I hope you don't mind, but I will email you privately with further information.

Thank you again for sharing your Mums experience

Kindest regards,

Rachel
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Tinlady
Posts: 9
Joined: Fri May 20, 2016 2:01 pm

Re: Mum recently diagnosed

Postby Tinlady » Tue Jun 07, 2016 11:09 pm

Rachel,
Thank you for your detailed responses, the information you have given has been excellent and very helpful.
Sorry for not getting back earlier, but following some discussion, helped by the info I have gained here, the endocrine team have had greater involvement in care. Control has definitely improved and thankfully mum was able to get the liver biopsy yesterday. Now the wait for results!

A huge thanks and I may phone at a later date or post further questions if ok?

The support here has been great thanks to all who responded!
Tinlady