What to expect

Hi there. My grandfather was diagnosed with bowel cancer 22 months ago. After radiotherapy chemotherapy tablet form and surgery which resulted in a cholstomy we were given the all clear. 4 weeks later in a follow up we were told it had spread to his nodes liver and lungs and that his chemotherapy would be to prolong his life and focus on quality. He underwent 5 sessions struggled towards the end but scans showed good shrinkage and he was given a 3 month break. Another scan revealed slow regrowth and his consultant was happy to give him another 2 months.within a month he started to get bad pains in his stomach and back (the nodes effected where in his stomach) he had another scan and was told the tumours had an aggressive regrowth and 2 more had developed in his back so straight back on chemo. 6 more sessions and although not the man he had been (2mile walks a day) he had no problems. He had a scan, about two weeks before his results he started to become unwell (3 weeks after last chemo) we thought he was constipated, he appeared to be having severe anxiety attacks (history since diagnosis) unable to catch his breath and feeling faint. We told the consultant at his results, I had to borrow a wheelchair due to his lack of energy, but his consultant was not concerned,he said the chemo had been excellent and all the tumours had shrunk better than could have hoped. He said the symptoms were likely the result of a bug he was struggling to fight and no way a symptom of the cancer. (I forgot to mention he had a blood clot in his leg which he was on fragmin for).A week later my grandad was no better so I called out of hours who were hopeless, I took him to his own gp the next day and we were sent to hospital. The pain my grandad was suffering in his stomach was through the roof. He had an x-ray which came back as a blockage in his bowels but he was still passing in to his colostomy. The next day after more proof of the pain he was in the did a CT scan. We were told the blockage was not needing surgery and it was left at that. I went back today to be told by another doctor that after further examination there is no blockage it is the cancer, an aggressive growth it is possibly pushing on his nerves causing the pain and more clots in his lungs will be the cause of his shortness of breath along with the tumours. We have to wait until Tuesday to get a better picture from a more senior doctor. I guess what I want to know is dis this sound normal? 5 weeks after chemo and symptoms have become so severe especially after such good results? They want to manage his pain but did mention chemo again, at the moment he is telling me no more. If he chooses not to carry on with chemo how fast will his deteriation likely be? 

  • Hello, 

    I saw your post and had to comment as i have had some experience with bowel cancer. 

    Sorry to be reading about your poor Grandad and everything he is currently going through. It is very hard to watch a loved one go through so much when it is out of our hands. 

    There seems to be a lot going on and of course your concerns are if the scans are showing good progress then why is he in pain. Cancer is sneaky and yes it can go from looking great to then showing growth. I can't answer if this is normal or not as I'm not a doctor, if you do have major concerns it is worth asking his oncology doctor or nurse straight up. Or maybe you could contact a Macmillan nurse or the case worker which your Grandad should have been given when diagnosed? 

    My Dad was diagnosed with bowel cancer back in April 2015 and it had spread to his lungs and liver at the time of diagnosis. They told him that he was incurable and chemo will only help stabilise the cancer to hopefully stop it from spreading further and to prolong his life. A doctor told my mum at the time my Dad's life expectancy was 2 years which she kept to herself. My Dad had a bowel obstruction in the August (4 months after diagnosis) and needed an emergency operation or he would die. The operation involved removing 75% of his bowel which did contain the cancer and he avoided needing a colostomy bag. The cancer being in the lungs and liver was what made him incurable and could not be removed as the cancer was described as being like tiny grains of sand. He was on/off palliative chemotherapy with breaks in between. At times he was very tired and poorly whilst on chemo. It seemed to be working with no growth every time he had a CT scan. Then in December 2016 his CT scan showed once again no growth in the lungs or liver and he was then given his break from chemo. He seemed fine and looked fine and we enjoyed christmas. Then in March last year during his break he started behaving out of character. My mum decided to take him to the hospital to be checked over as she was worried he may of had a stroke. After tests and scans we found out that there was lesions on his brain. A brain op was performed days later and it was in fact the cancer which had spread to his brain. Nothing could be done. I watched my Dad dying over the course of a few months, he paased away August last year...almost 5 months ago now. He deteoriated quickly because of the cancer spreading to his brain. I didn't expect to lose my Dad at 28.

    I think if your Grandad decides to stop chemotherapy and enjoys what time he has left then it is ultimately up to how aggressive his cancer spreads as to whether he deteoriates quickly or not. And it also depends on his overall health. Some patients deteoriate fast and only have a matter of weeks or months, some may live a year or more without any type of treatment. It is a hard one to answer and most doctors probably can't answer that question either. But if your Grandads cancer seems to be growing quite rapidly then I would think he would deteoriate fairly quick over a matter of months. 

    Not sure if I have been of much help or not but if you do have any further questions please feel free to ask. 

  • Thank you for your reply butterfly, I am so sorry about your dad. My grandad is 76 he moved in with me and my family when diagnosed and we have enjoyed the past few years. The children have had an opportunity to get to know their great grandad on a new level. He is a strong man who is terrified of pain, his personality changed over the last month and he became more forgetful, I expected similar news to yourself but nothing has been said about growth in the brain. I will care for him at home and have lpa in place, I am just hoping his suffering will not be drawn out. I feel so sad for him, we booked a weeks cruise in may so he could " see Rome and die" I expect I will be cancelling that, 

    I just need a prognosis, no one has ever mentioned time scales with him. I will be sterner tomorrow and make sure things are clearer.

    Thanks again

  • I hope your Grandads appointment went as well as it could be. You often find Doctors talk there way around certain questions because they don't always know the exact answers themselves. Usually time scales that are given are based on overall statistics from others with the same condition. This doesn't mean it will be the same for him. But I guess it just puts your mind at ease if you do have a rough indication so you know what to expect.