Pancreatic Cancer Stage 4

Hi,

 

my mum is 58 years old and was complaining about toliet troubles a few months ago, the doctors said it was IBS and gave her tablets. Nothing was working, she even provided stool and wee test, came back negative first time round. She did another stool and wee test which showed blood and they referred her to have a CT scan. 08/10/20 confirmed pancreatic cancer stage 4 which has spread to the lungs and liver.

 

my mum has lost 2 stone 6 pounds in the space of 2 months, in a lot of pain, eating little and hardly sleeping. I am 23 years old, I lost my eldest brother last year December 2019 who was mentally ill. 
 

I feel lost - my mum is my bestfriend and I am unsure what I can do to help her. I want to find out how fast cancer can spread from Stage 1 to Stage 4. I am also frustrated that the doctors thought it was IBS in July time. They said her cancer is spreading rapidly. She is jaundice, having a camera down her throat on Monday to check out the blockage if any. She is awaiting liver biopsy date. Nothing setting stone yet. My great grandmother had bowel cancer and I am wondering does that mean it's inherity in the family?

 

did stress from losing my brother trigger this too? So much is going on within the space of a year. They have adviced we have roughly 6 months with her. I'm just angry, confused and upset. 
 

please can anyone advice or share their stories with pure honesty. I like to know things straight up and if anyone can relate.

 

Thank you

Julie

  • Hello Julie

    I am so sorry to hear that you are going through this at such a young age. I hope you have someone close to support you ?

    My family has gone through a similar experience with my partner who also suffered IBS type symptoms from December 2019 through the winter. He also went to the dr who gave him pills etc and nothing helped . Like your mother he was tested for cancer in March all clear but the pain and symptoms persisted .
    The Dr arranged at CT which confirmed Stage 4 cancer in pancreas ,liver and spleen .

    We were shocked and not prepared for this just at the beginning of lockdown ,luckily he was offered chemotherapy. Pancreatic cancer soften seems to go undetected until it is too late  ,my only wish that he could have had a ct scan earlier in December .
    Unfortunately the symptoms of cancer made him continuously sick unable to eat  consequently he lost so much weight .

    It was hard to know where to get support at first we were fire fighting with anti sickness drugs from oncology and GP.

    The worst problem was fluid build up in his abdomen called ascites .
    My partner was admitted to hospital several time's to have a drain of fluid ,this did have a short term effect on his appetite and life .
    We gave up with normal eating , he survived on Ovaltine, choc ices and crackers !
    The oncology team were fantastic but the cancer and effects of chemo and infection were too much . 
     Unfortunately  despite everyone's best efforts he died in early

    August . We were lucky that he was at home until the final weeks when he went into our local hospice .

    It was extremely hard to see him leave ,knowing he would not come back but the outstanding care from staff at the hospice made his last few days much more comfortable and bearable .

    The staff also look after the family and support them too.

    My advice is not to be frightened to ask for help

    from the cancer nurse specialist , GP , palliative care team . Sometimes because the hospital and surgery staff are busy they forget the family need answers and support.

    Www.pancreaticcancer uk website was really helpful in giving us information to understand the symptoms and how to manage them . Also Macmillan uk and Cancer researchuk to cry down the phone when desperate .

    if your Mum is offered respite in a hopsice don't be frightened to accept ,my partner just thought it was only for end of life and he may have had more time if he had accepted a place earlier .

    Sorry I cannot give you hope just a real picture of how things

    were for us , please take care of yourself it's going to be a tough time for you and you have suffered already !

    best wishes

    ksg

     

     

  • Hi Julie, Sorry to hear about your mum, i can only imagine how you must be feeling.  My sister (34) has been diagnosed with Pancreatic Cancer also.  It was difficult to diagnose and seemed to take some time.  She was diagnosed back in Jan 20, she has a wee baby at home also.  She had the camera down her throat a few times before being officially told that she had cancer.  No idea how she got PC, she is one of the healthiest people that i know. 

     

    She went through one 12 week round of chemo (Folfirnox), which shrunk the mass a tiny bit (not enough for Whipple), so she went for a further 12 week round, however the scan showed that the cancer has grown and it now pressing against nerves as well as being wrapped around bloood vessels.  She now has fluid in her stomach but they are unsure if it is cancer, apparently there is not enough fluid to determine that yet. 

     

    She has now been put on another form of chemo (gemcitabine) for 8 weeks before she has another scan.  Like you i am angry, i do not understand how she has got PC, there is no history of this in our family.  I am scared for her and i am beyond devastated.  She has been in a lot of pain, specifically her back which her pain patches and various other medications do not even touch.  She is exploring other options to manage the pain.  She has suffered greatly with stomach pain and cramps as well as diarrheoa, her weight has also plummeted. 

     

    Thinking of you and your mum.

  • Hi Julie.

    Sorry you find yourself here.

    Pancreatic cancer is a mind screw.

    It apparently can take many many years to show its ugly self. If caught early enough stage 1 maybe 2 and you can have whipple it may prolong your life with chemo and radio therapy. If not then its pallative care so its not then about getting rid so much as it is managing symptoms to get a better life. 

    My husbands PC did not show itself until a few weeks befor he passed. He had been complaining for some time of shoulder pain stomach upsets constipation but they came and went. 

    Towards the end when he got ascites(fluid in abdomen was when he went to hospital. They drained it and within 2 days it swelled up again. 

    His fluid had cancer cells within. 

    He was in discomfort but once they gave correct pain meds he was okayish but it was not good news he was told he was done. His words not mine. Within a week he passed. 

    By no means was this as easy as it sounds but my brutally honest version is not what you need to read.

    All i will say is push the doctors for answers get the pallative care nurses on board asap if you intend to have her at home they will help. If you have no one to help this may be to much for you on your own. You have to be able to be assertive with people as you will know what your mum would want. 

    If there is hope for her getting help dont let them make you wait. 

    Above all else be there as often as you can. If she goes to ebd of life care with no sign of covid you can be with her at the hospital and stay overnight if you feel you want to be there.

    Anything you need to ask dont hesitate.

     

     

  • Hi - I am so sorry. My mum who's 71 got diagnosed with stage 4 same on Monday and I'm so lost. I feel others who are going through the same will be able to support each other. I have been doing a lot of research.