Any advice! Terminal Bowel Cancer

Any advice would make me eternally grateful as it seems the professionals are being so vague.

my mum went in for an op in Dec for piles, she came back from surgery and we were led to believe that everything went well and the surgeon would be round the next day as they had went home. Went to take her home the next day and the surgeon had said nothing was done as they found a mass. About 5 weeks later she got a ct and MRI scan. She then got a pet scan then an appointment with a surgeon a few days later. The surgeon said there was something there but they weren't sure what it was. He was very vague. They needed to wait for the results of the pet scan. We were told if it was cancer she would receive chemo and 5 days or radio. 4 weeks later we had an app with the onchologist he said it was cancer T4 and it had spread to the stomach wall and lymph nodes in her pelvis. He said she couldn't get chemo as she was only 5 1/2 stone. They gave her one session of radio. We had another app with the onchologist yesterday she is now 5 1/2 stone and he asked her to weight up the pros and cons of getting more radio as it is a 2 1/2 hr round journey for this. She said that she wanted this so now we're waiting for the radio app. I am so frustrated and angry every time I ask a question they just say they don't know. She isn't eating and they mentioned steroids but never gave her any and she has been given ensure but she can't drink them as she is sick. I have asked how long we're looking at and they said how long is a piece of string. Any advice or similar experiences would be greatly appreciated. 

  • Dear Diane I am sorry for the situation that you and your mum find yourselves in. There is nothing in the world that can prepare you for a diagnosis of cancer. My son was diagnosed in may last year with stage 4 bowel cancer and liver mets. He had his tumour removed and had palliative chemo with some trial drugs to try to reduce the many tumours in his liver. He died in January of this year he was 35. On the macmillan forum there is a lady whose mother had a similar diagnosis and she got to a situation where she has had several liver resections and seven years later is still going well on palliative chemo. I think the truth of the matter that because everyone is so individual they cannot always be specific about time left etc. We knew from our research that it was unlikely Jonathan would survive, but there is always hope and new treatments coming to the fore. I wish you both well and sorry that I cannot be of more help for you at this time. lesliexxx
  • Hi Leslie Thank you so much for your reply. I am so so sorry to hear about your son. I am the same age as him and I can't begin to imagine what you are going through. I understand that everyone's diagnosis and body is different, I am just scared that I don't do my best for her. I am just heartbroken and feeling useless xxx
  • I would ask for a second opinion,as your not happy, they really don't mind, never be afraid to be assertive with the oncologist or surgeons, you can request an appointment by speaking to the oncogists or surgeons secretary they are very helpful, just go through the hospital switchboard , hope you gets some answers and a plan xxxxx