Mum diagnosed with pancreatic cancer - no treatment. Had ERCP stent

[Lottie35]

Hello everyone.  My dear mum received a shock diagnosis of pancreatic cancer at the beginning of May.  She is 76 years old, previously fit, healthy and active. Her only symptom was intense itching all over for a couple of weeks.  The GP told me he was worried about obstructive jaundice and ordered urgent blood tests which confirmed his thoughts.  She was told to go to the Day Unit of our local hospital and may be admitted.  This was the Thursday before Good Friday.  They didn't seem too worried, looked at her notes and said they thought the cause of this was a previously diagnosed gallbladder polyp which she had had for about 5 years, but was left alone as no symptoms.  They said she didn't need any more scans/tests etc and to come back the following Tuesday.  Over that weekend her wee and poo had both changed and as I dropped her off once more at the day unit (couldn't stay with her due to COVID), I advised the nurse she had more symptoms.  She was sent home again and told they would do an urgent referral to Gastro, but to go to A & E if jaundiced.  I rang the hospital as so worried and got an appointment with Gastro in two weeks' time, however this was just a telephone consultation.  By the Sunday, mum was feeling really unwell and severely jaundiced.  I rang an ambulance and she was admitted. After 2 weeks in hospital, apparently normal ultrasounds, liver biopsy and blood tests, I was told that they had got to the bottom of her symptoms and the jaundice was caused by her cholesterol medication and she would be home in a couple of days.  However, mum was told they were going to get a second opinion from a specialist liver hospital to check they were not missing anything.  They ordered a CT scan and reviewed the results themselves. This unfortunately showed a mass on the head of the pancreas. An ECRP stent was inserted a few days after, after which mum developed sepsis and really deteriorated. A chest x-ray had shown lung nodules. Mum was too unwell for a PET scan and was told her cancer was terminal and she had weeks/months.  She declined palliative chemo as wanted quality of life.  

Mum came to live with us mid-May. She was so poorly initially but now you wouldn't know she was ill.  She really struggled with sickness but that is under control with medication and she has Creon with food.   I'm struggling with how she can be so well now four months later and wonder if this is normal.  I know the stent is keeping her stable, but think she can't be this well with this diagnosis.  If anyone can help at all with their experience I would be so grateful. Are we really looking at a couple more months ?

Thank you everyone. 

Edited September 6, 2021 by Lottie35
Had not finished

[LisaC]

She may be stronger due to the creon she is able to absorb more of the nutrients from her meals and with the help of the stent also. 

It’s difficult to say how long someone can manage without treatment. 
my fiancé was very unwell with his symptoms and side effects of the cancer, infections, pulmonary embolism swollen legs due to enlarged liver from the metastasis and the beginning of jaundice. He managed less than 5 weeks after his diagnosis. 
 

[Skippy]

Lottie I'm so sorry to hear of your mother's diagnosis. My thoughts are with you tonight.

In similar case my brother 74 had no symptoms at all other than a complaint of a body itching. He didn't even inform his Dr. It was only his regular attendance of his blood test for his Warfarin medication that they discovered with further testing he had a "small lesion on the head of the Pancreas". Within weeks of fast tracking he was in hosp preparing for a Whipple op and just the day before the op he turned jaundiced. Id like to say after he recovered from his Whipple op (3 months) he gained strength and became his fit usual self again. Jaundice free. He was up and about socialising. No pain reported by him and ate well and took Creon with all meals. His condition remained VERY stable for 12 months. Then during the year's anniversary with the consultant he revealed "a spread of cancer spots to his liver and lungs" He continued still reasonably able,  walking, eating, he was informed his prognosis was poor in the ' short term' but Bro refused palliative chemo ( his choice) he also didn't wish to hear how ' long' he had. But after a further 3 weeks we  began to see a lot of thickness to his legs and the weight gain was build up of fluid to the lower half of his body for a further two weeks, before his passing. Everyone is differently affected in so many different ways as you will see on the site here with people writing of their experiences. 

[Gaffer]

Hi Lottie

My advice to you is not to get hung up on time frames. I don’t think it’s particularly helpful or useful but know from experience that timescales are usually given. Some people exceed the timescales, others unfortunately not.

 

My husband was diagnosed in August 19 , aged 54 with terminal pancreatic cancer with liver mets and was told an average of 6 months. He had 21 rounds of palliative chemo and various procedures but very sadly died in April of this year.  Although 19 months exceeded the timescale, of course we all wanted more.  It was especially difficult through the pandemic as we were shielding and not able to do the things we could and would have done otherwise, though thankfully we did manage a couple of short trips away in the countryside, took plenty of photographs and now cherish these memories. 

 

What I would say is try and do all the things mum wants to do if she is well enough, if you can enjoy trips out, or just be together and talk. I would say this was the most important thing, just talking, hugging and being together. We spent many days in the pandemic in the garden on our garden chairs not doing anything in particular but just being together. Does it matter if the house is untidy etc, in the big scheme of things - no. 

 

Just take one day at a time and try not to focus on what lies ahead - I know easier said than done.

 

The nurses at pcuk are fantastic, they have a wealth of knowledge. I don’t know what we as a family would have done without them. Please make sure you get support too, as a carer it’s a tough road and your head must be filled, as mine was, with very many thoughts and emotions. 

 

I wish you all the very best x

 

 

 

 

 

 

[Lottie35]

Thank you so much everyone for your replies and kind words.  It helps me so much.  Mum is still really stable and doing well 5 months on.  We are having lots of days out and enjoying time as a family.  We went to see the Consultant last week for a little more clarity as I was struggling to accept things with mum being so well.  However, it is still a bleak picture.  He was very straight with us, as mum asked him to be.  He advised another scan would not make any difference as it wouldn't be good news.  Pancreatic cancer and 99% sure mets to lungs from scan results and CA19-9 being so high (83000). They didn't expect mum to make any recovery at all, so the fact that she is here now is amazing. The stent is obviously working well for mum. The prognosis on hospital discharge was less than 3 months. Each day that mum is well is a blessing.  I am dreading what's to come, but taking each day at a time.