So frustrated!

Hi I'm really sorry to read that you are going through this. I understand ypur frustration. My husband is also 59 and all his symptoms happened about 2 months ago.  He was itching then tired  them his urine went dark and stools were very light and he went yellow all in a week.  We took him to A&E and there next day he had an ultrasound which showed dilated bile duct. They wouldn't admit him sober had to wait over 2 weeks for a CT scan.  On the 22nd November we saw the consultant for the scan results. He told us the scan showed a tumour in the pancreas which had spread locally so inoperable at present.  I am a nurse myself but it didn't quite register until after the meeting the nurse gave us an information pack on Pancreatic cancer ...I just cried ...I think I didn't want to think that my loved one had cancer..... since this time he has been in hospital for a few weeks and finally had a stent to reduce jaundice and had a biopsy. He is scheduled for chemo in early January.  I asked the Dr what the biopsy would show and he said that it would give a more accurate info on type of cancer,  although they said they are 95% sure what type it is...he said on very rare occasions it's not cancer but this is extremely rare.  We like you still don't have the biopsy results but cancer is what they are saying it is.  I believe that cancer presents a certain way and they have a good enough idea from scans. I still pray though that the biopsy results will show it's not cancer...is there any plan for your dad to have chemo or have they said anything about stage or surgery.   I wish your dad and your family well ..I know it's such a difficult time..you're not alone xx

Hi carli04

thanks so much for your response...I am so sorry to hear about your husband..you must be feeling terrible and I understand that nothing anyone can say can make you feel any better!..but I am absolutely sending you my love x

has your husbands cancer been staged?

out situations are quite similar being the same age and it all happening within a matter of weeks!

i have 2 small children who are only 3 and 5 so I am really struggling and can’t stop crying.I think I can’t start coming to terms with it until the doctor actually says it’s pancreatic cancer-up to now they have said it’s likely to be cancer but they will not commit.I also know that unless they can operate to save his life he will definitely not have any treatment to prolong his life.He has lost a huge amount of weight,jaundice,feels sick,can’t eat much,sore tummy,problems with his bowls and other symptoms.So obviously everything points to pancreatic cancer but I am absolutely in shock and can’t accept it until we have a definite diagnosis.

my dad was diagnosed with diabetes about 2 months ago -and what I didn’t know was diabetes is a symptom of pancreatic cancer especially type 1 and in someone my dads age so I am confused why they didn’t scan him sooner and am angry that if it is and they found out sooner they might of been able to do more

how is your husband coping with all of this?..I have noticed that my dad as really bad anxiety and is definitely depressed.

rachael x

Hi I know it's such a difficult time...my husband has been diagnosed with stage 3 meaning it's locally advanced but at present inoperable.  We hope chemo will shrink it. I have been angry with the hospital who have waited over 4 weeks to treat the jaundice..actually from the 2nd November when he first presented to a&e with jaundice they only managed to put the Stent in on 18th December. This has delayed chemo and possible spread of the cancer by then. My husband hasn't worked since 2nd November.  He us struggling with eating and gas a lot of discomfort after eating.  He takes pancreatic enzymes which help. He has also lost over 2 stone in weight. He is fed up probably a bit depressed and just sits around.  Tomorrow we'll be going with the kids for Xmas but he may not come with us.

What stage is your dad. Does he has enzymes to help with eating?  Also any idea on chemo.

You are not alone. Stay strong. sending you my love and best wishes x

Hi

I have been on this journey and I agree that waiting for results is very frustrating. The doctors usually say that it is probably cancer before they have all the test results back because at this time they are not totally sure.

i hope you get the results soon.

Squeaky

Hi carli04

you asked what stage my dad is at but even though he has all of the symptoms,mass in his pancreas,and raised tumour markers in his blood they have still only said that “it’s likely to be cancer”the actually have not committed to a diagnosis ..they fitted a stent and sent him home so even though everything points to that I just can’t accept it ..maybe if they commit to a diagnosis then it might sink in..but at the moment it just feels like I am in a bubble.

the one positive is that although they found a mass on his pancreas his liver was clear so surely that’s a positive??..I just so confused as to why they would send him home without confirming a diagnosis and I feel it in my gut for some reason that they have sent him home to enjoy Christmas with his family so are they saying that there is nothing they can do (without saying it)..and if that’s not the case and there is a operation he can have them I am concerned about the wasted time that might lead to a spread...so basically if they know why won’t they just tell him!.

they have given him creaming to help digest his food so hopefully that will help him..what have they given your husband??..and has it helped??

my head is spinning and I am thinking so many things all the time as I am sure you are..the one thing I can’t stop thinking is it possible that it’s pancreatitis??...I have been reading so much that I have totally confused myself and I am trying to convince myself that it’s something less sinester!.

lots of love..and all my best wishes to you and your family during such a difficult time xxx

Hi squeaky

thanks so much for your message of support!..I really appreciate kind words at the moment!

would you share your story with me? I am trying to learn about it but from real experiences because google only tells you blunt facts and not from a human point of view if that makes sense.Its of course ok if you don’t want to talk about it..either way I am sending you my love and well wishes x

Hi Razzleshedazzleo

In your thread you mention that you think it might be the case that the medics know your Dad’s diagnosis but are keeping this from him till after Christmas. I doubt this is the case. My experience is that the medics are very upfront and tell you what is going on. Pancreatic cancer is difficult to diagnose and I suspect they are simply waiting till they have further results.

Ive been on this forum for about four years and I have learned that PC takes many forms. My own story is that my husband had a small tumour which was removed with a Whipple procedure. About 20% of those with PC can have this. It’s a big operation. My husband recovered well but the cancer returned and he died 10 months after diagnosis.

The Creon will help your father digest food. It’s an enzyme not a medication.

if you haven’t already done so have a look at the Pancreatic Cancer Uk Website. It is very good.

Its hard but try to take one day at a time. If you have other questions I will try to answer them.

Squeaky

Hi Razzleshedazzleo thought you might like to hear from another in a similar situation - firstly, I'm so sorry you are going through this, I agree it's a shock at first and difficult to understand whether things are going as they should. My husband (55) was only diagnosed mid-november but they could only talk about a "mass" in the pancreas after the CT scan  -  then they  inserted a stent and did a biopsy which confirmed it was pancreatic cancer. Felt like within a couple of weeks I became an expert on things I'd never heard of before - and this forum was very helpful. One thing I learned about doctors is that they need to be cautious about giving false expectations, so it's up to me to ask the right questions. There are amazing helpline nurses on the pancreaticcancer.org.uk website - I kept calling them with random questions until things started to make more sense - I can't recommend them enough.

As for where my husband is now? The stent has helped him settle, and he has been upping his pain relief doses until he can hit the pain-free sweet spot. He knows he needs to focus on eating & sleeping  to have a crack at chemo in january.  He's never been into anything touchy-feely, but found a hypnotherapy session very helpful when he was in pain, so now our philosophy is "if it feels good - do it". So whether it's getting the cat to purr on his tummy (pet therapy!), lavender-scented baths (aromatherapy!) or a foot rub (reflexology!) we are just making it up and living day by day and really making the most of the times when he feels OK. I hope you start to feel you are getting your head around it, there are some really great resources out there, do take any help that is offered 

Dear Razzleshedazzleo

I myself was admitted to hospital with pancreatitus thought to be caused by gaulstones, after having a biopsy and a stent put in, I too was sent home with them saying it was possibly cancer but they were referring me to a specialist in that field.  It felt like ages before an appointment came and it wasn't until all the ct scans and tests had been done that I got a definite diagnosis, fortunately for me it was in its early stages so I was able to have surgery and am now recovering.  There are many questions that I am sure you want to ask so my advise is to ask, ring the hospital and ask who your dads contact nurse is and her number so you can ring her she will try and answer or will be able to guide you in the right direction.  I hope this helps.

Can I also ask if you actually talk to your dad about it, I know first hand that people don't ask you how you feel about it because they don't really understand it or are afraid of the answers, but it might help both of you if you can talk about it.

Hi

The advice on here is very good, I would only add that I found it helpful to email the nurses at PCUK. They will answer your questions in a very gentle and caring manner plus they try to respond within 24 hours.

Like you, I wanted to know EVERYTHING! Unlike my parents. Beware, this adds its own pressures and I found it a strain from time to time.

Don’t forget to look after you too.

sending big hugs 

mm