I feel your pain. I too was diagnosed with bowel cancer last year. The tumour was removed, but it has spread to the liver. I am on chemotherapy and tablets. It is frightening, given the time that I have left. I am coming to terms with it by talking to friends and family, being honest and not hiding my fears. I don't know your circumstances or condition, but I would urge you to get a second opinion from another consultant asap. There may be other options for you. Take it a day at a time and share your concerns with others.
Although I was content with the treatment suggestions, I wanted a second opinion to see if the treatment is correct, and whether there was a chance to do something about the liver, since surgery is not an option in my case. The consultant at the second hospital suggested that SRIT maybe possible, but felt it unlikely in my case. He confirmed that I am getting appropriate treatment after checking scans, records etc made available by my own consultant.
Although nothing has changed for me, I feel reassured that someone independent has checked and confirmed my treatment is correct. It has helped me to come to terms with the future.
As you are living on your own, it is important that you receive advice, counselling and someone to talk to. I know these are very dark days, but I have found solace and comfort in the support from others, and indeed others attending my cancer clinic. Take care.
I have just read your message. My husband was diagnosed last week with exactly the same. Tumour in bowel, spread to liver, which is not operable. He will start chemo tablets.
I am in bits, very confused. I just don't understand what is going on..
Have you been given any other options? How are you feeling?
I'm so sorry to read of your husband's diagnosis. Has he had the tumour in the bowel removed? The first thing to remember is never to give up. You both must keep in good spirits and never take no for an answer. Do also make sure that you are honest with each other, and share your concerns. Get a second opinion, as I mentioned earlier, alternatives may be available.
Why tablets and not chemo, can he be entered for a trial? Do also spend time reading about the condition from reliable sources such as MacMillian and take advice about 'fringe' treatments with a large pinch of salt. You don't need 'false hope'.
As for me, I'm ok. I was given 12 months, but I've passed that, so grateful for each day. I'm having a break from chemo, which was been a bit hard during last few sessions, and now awaiting next CT scan.
It is a lot to take in as the tumour in his bowel (which was found by chance, when he was having a PET scan for his neck!). He has zero symptoms, fully well, still running etc. Blood tests came back negative, liver function totally fine.
He had a biopsy on the tumour in his bowel in October and it came back benign. We were then called back in November to be told that they have found tumours on his liver and they think that they have come from the tumour in the bowel... which is hard to compute as we were told it was on the benign end of the scale.
They then did a Octreotide scan to see if the hormones matched, they confirmed that they did not.
He then went on to have an MRI just on the liver and then confirmed that actually it is secondary from the bowel, and it is not curable.
We haven't actually seen the Oncologist yet, only the bowel specialist. He said he won't operate as he doesn't want to disturb the tumours in the liver.
It is extremely confusing and my head is in a mess.
You sound like an extremely strong person, I really hope the CT scan goes well.
I can see why you are confused! The appointment with the oncologist is the important one. Do get this as soon as you can, maybe followed by a second opinion if you are unclear. I would have thought surgery to remover the tumour in the bowel should be considered, but that is for the medics to decide.
I am so pleased that your husband is still very active and no symptoms; this sounds promising. He must keep active and as well as he can. Easy to say, I know. Start asking around for a consultant to access for a second opinion, just in case. I guess you will have to pay for it, but it is worth checking once your oncologist comes up with a treatment plan. Hopefully, you will also have access to a cancer nurse who will be able to answer any questions. If not, phone Macmillan.
I wish you well. Let me know how it goes. I don't have the answers, but I do know what the stress is like.
The reason that they don't want to remove the tumour in the bowel is because they said that it is so un aggressive/benign there is no reason to. They said the liver is the part they need to concentrate on.
Do you know if all liver cancer is non curable?
He is being beyond positive at the moment. As I say, he has no signs of illness, no fatigue. Literally, nothing, so it is quite hard to take in.
I even wonder if they have made a mistake with his diagnosis.
We meet with the oncologist on 23rd January. I will happily pay whatever is takes to get a second opinion.
Good. At least you don’t have too long to wait before he sees the oncologist. Very important, make a list of questions before you go and make notes during the interview.
Some liver cancers are operable by cutting out the cancerous parts if in one area. Livers are the only part of the body that regenerate, I understand. Other liver cancers are treated with immunotherapy. Also look up SRIT on the internet. It is a relatively new therapy using radiation now available on the NHS in some areas. My cancer is scattered all over the liver so these treatments are not viable for me, which is why I am on chemo. I’m hoping to join a trial if one is available. I live in hope but have no expectations.
