A forum for family, friends and carers of pancreatic cancer patients

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Devastated
Posts: 2
Joined: Sat Sep 23, 2017 9:09 am

Mum just been diagnosed with PC

Postby Devastated » Tue Sep 26, 2017 12:48 pm

Following mum being diagnosed suddenly with type 2 diabetes 2 years ago, and gradual decline in her weight, which we thought was due to her eating more healthily, we now find out, having attended the doctor with the indigestion type pain, and sore back, not to mention the erratic blood sugar levels - that she has pancreatic cancer which may have spread to her liver, but has wrapped itself around a main artery.

This was discovered following a ct scan only 10 days ago, and on Friday we spoke to the Consultant who confirmed our worst fears, that mums cancer is beyond operable. She is fit, active, doesn't drink, and was a moderate smoker 40 years ago. She lives the healthiest lifestyle of anyone I know - however, her mother and her cousin contracted the same disease and now I am wondering if its genetic?

Today (now) she is in having a stent put in having become very jaundiced over the last week. She went in at 7.30 and is not in the ward yet - so now I am very concerned.

She has been offered chemo, but we have yet to speak to someone regarding our options. I have been reading up on what is/is not available, and I am totally bamboozled by it all. It just seems too much to take in.

Mum is fortunate to have many many friends and family around, but the strange thing is that although we are all very close, we seem to be dealing with this individually, and I am feeling quite alone. Plus trying to be the strong one to help the rest of the family. I have always been very close to mum, and see her at some point every day. Dealing with my kids being really upset is if anything more upsetting for me, as mum is being really strong, accepting, and not blaming anyone for having contracted this awful disease. On the other hand I want to blame her gp and hospital for not picking up on this before now, when its clear she has had the tumour for probably a few years.

As the tumour has just been diagnosed we don't know the rate at which it is growing, and therefore it is difficult to determine where we go from here because we don't know what stage she is at. Apparently because it started life as a cyst it is different from IPMN?

I need some guidance, help, support, information, anything, just so that I don't feel totally helpless. I feel I should be doing something, so any feedback from anyone at this point, would be much appreciated. I probably should have read through all previous posts and may have found information, and may do this later, but right now, I just needed to share this with anyone who will listen.

stmfst
Posts: 10
Joined: Wed May 06, 2015 2:59 pm

Re: Mum just been diagnosed with PC

Postby stmfst » Tue Sep 26, 2017 7:10 pm

I am so sorry. You are all in shock, no doubt and in an isolated place right now. I recognise completely how you are feeling. It is horrible. My family were all wonderful when we were going through this. We all reacted with different emotions at different times but most importantly we were all there for each other always and I hope the same will be true for you. I do hope the stent was fitted successfully and that your Mum will start to feel a little better. The nurses on the helpline will be able to support you with answering your questions when you feel able. Wishing you the very best of luck.

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Mum just been diagnosed with PC

Postby Justamo » Tue Sep 26, 2017 9:03 pm

Devastated, I am so sorry for you. This has been such a shock for you, (and for mum of course) and it's going to take you a while to come to terms with it. My husband lost a lot of weight too, and I felt so smug about it because I had put him on the 5/2 diet to lose a couple of stones. When the diet had finished he kept on losing weight, and then the other symptoms appeared - diabetes, jaundice, pain, etc. etc. I even felt guilty about that for a while.

Can I suggest that you go through the PCUK website, and read the bits which seem relevant to you ? That will give you some background information, and will stop you from Googling other less reliable sites. Our nurses are at the end of a phone line and will answer any question and give you good supportive advice.

Everybody on this forum knows exactly what you are going through, especially at this stage.

The stent will help with the jaundice symptoms; I expect Mum is back on the ward now and feeling more comfortable already. Don't waste energy being angry with the doctor for not picking it up earlier; it's a natural response but if you read some more stories on the forum you'll see that lots of people aren't diagnosed until they reach Stage 4. Try to stay calm for now, I understand that your kids are upset too and you are trying to help them, but you can't help anybody until you feel a bit better yourself.

Please stay in touch on the forum and let us know how Mum is tomorrow.

I'll be thinking about you this evening Deva, and hope that you are feeling calmer and more able to cope tomorrow.

With love
Mo

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

Re: Mum just been diagnosed with PC

Postby Wife&Mum » Wed Sep 27, 2017 8:26 am

Dear Devastated
I'm so sorry that you find yourself here but I'm sure you will find a wealth of information and support. At the beginning it's hard to avoid information overload but the wonderful nurses on the PCUK support line can answer any initial questions.
I do hope your mum's procedure was successful yesterday and that she's already feeling better.
Love, hugs and best wishes
W&M xx

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: Mum just been diagnosed with PC

Postby PCUK Nurse Jeni » Wed Sep 27, 2017 3:08 pm

Hi there,

Just to echo the responses from the forum family, we are so sorry to hear of what your mum is going through right now.

I am sure at the moment it is such a shock, and that you need to find out more information as Mo suggested. I hope that your mum has had a successful stent insertion by now, and that she is recovering from this.

Please do not hesitate to contact us should you need to. You can find our contact details on the signature below.

Kind regards,

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

Devastated
Posts: 2
Joined: Sat Sep 23, 2017 9:09 am

Re: Mum just been diagnosed with PC

Postby Devastated » Wed Sep 27, 2017 8:31 pm

Thank you to everyone for the supporting and kind words. Mum did eventually return from the theatre having had the stent inserted, but seemed to go into shock, and they tested her for sepsis, although it appears she is clear. Gave us all a bit of a fright. However, by 8pm last night she was quite cheery, and pain free for the first time in months. We were all elated. However, this was short lived, I imagine she still had some of the sedative dulling the pain, because since she has returned home today she has been in agony, and taking double pain relief to cope with the pain. I have taken her to live with me for the next while until we see what is happening. Don't know if I should take her back to the hospital, or is this extreme pain normal following a stent being inserted. Help please????

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Mum just been diagnosed with PC

Postby Justamo » Wed Sep 27, 2017 11:00 pm

Deva, pain like that should be reported to your GP immediately. Phone the out-of-hours number straight away.
Some discomfort from the procedure is normal, but severe pain should be investigated without delay.
Get on the phone now !
Love, Mo

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: Mum just been diagnosed with PC

Postby PCUK Nurse Jeni » Fri Sep 29, 2017 9:02 am

Hi there Devestated,

Just checking in this morning to see how your mum is doing and whether you called the gp out last night or not?

As Mo said, some discomfort is normal after such a procedure, however, severe pain may be a sign of pancreatitis, or inflammation of the bile duct system, which is called cholangitis.

I hope that your mum got some treatment and is more comfortable now.

If we can help at all, please don't hesitate to contact us.

Kind regards,
Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707