Topic: Still well 12 months after diagnosis

My husband (63) was diagnosed with CC in November last year after a routine scan. The tumour was already 12cm at that time but was positioned so that the liver could still work well. Since that date he has had CAT scans every 3 months and the tumour has spread to both lobes and a localised limph node. As he has been well he has elected not to start chemotherapy, but I am scared that as the tumour is growing we should seriously consider it now. Has anyone any experience of CC has no symptoms? I am scared that when he finally does get ill things will progress very fast. We try to forget aboutit and get on with our life, but we are increasingly aware that we are just waiting for him to get ill. He is starting to get dull aches on both sides of his body and his abdomen is slightly distended but that is all. Any advice anyone please?

Re: Still well 12 months after diagnosis

Dear UK wife,
It sounds like your husband has been having a very good quality of life since being diagnosed, and that is wonderful. Please don't have worries that you didn't try chemotherapy earlier, and don't feel guilty,  as your decision allowed your husband to have a pretty normal existence, it seems. It's an individual choice and there are no right or wrong answers. I always have to say that to people because I know that there are some people who have benefited tremendously from chemo -- in my mother's case, chemo was a bad idea and I wish we had never tried it. But everyone is different, and we're all groping for answers in the dark.

As for your husband having no symptoms, that sounds like my mother's experience. Please don't let the fact that she died influence you - this disease progresses differently in everyone. My mother had intrahepatic tumors on both lobes and I guess it didn't interfere with her liver function until near the end - never needed stents or anything. Her only symptoms were fatigue, dull pain in the abdomen and abdominal swelling - when these started to get worse and she was nauseous all the time, she tried chemo and it really weakened her immune system, which was not too good to begin with. She was allergic to many drugs and had autoimmune disease, so that is partly responsible for her not tolerating chemo well. I think the chemo actually hastened her death, so it's a really tough call - some people would have their lives extended by chemo.

I would take into account your husband's strength right now and his tolerance for drugs - we all want the best quality of life for our loved ones, and it's so hard to know what will make that quality better. As I told my mother, you can always try chemo and see how bad the side effects are, and then quit if you think it's too much. You can just give it a trial run if that's what you want, and make sure you get anti-nausea prescriptions and pain meds for side effects and the natural symptoms of the disease.

I wish I could give you better and more well-informed advice - I'm so glad that your husband isn't in that much discomfort, but I know you're just waiting for the other shoe to drop and it makes you feel so helpless. Please know that whatever you decide to do is the right thing and your love and support is more important than any medical intervention.

I wish you all the best and hope your husband stays healthy-
Joyce

3 (edited by JeffG Mon, 19 Nov 2007 13:59:26)

Re: Still well 12 months after diagnosis

Hi UK Wife,  I would agree with Joyce.  AFter my resection of my right lobe of liver and gallbladder, I chose to do nothing for 5 years except monitor with quarterly Ct Scans.  Even though I could see it was growing and even metastised to both lungs I stiil monitored.  It was very slow.  About three years ago I made a decsion to start trying some chemo regimens to see if something would work.  I honestly feel that I bought some extra time by doing so.  It appear some chemos worked for awhile and others did not do anything.  But it is certainly an individual choice as chemo can react differently on different people.  It's tough and rough with some not so bad with others.  There is about a 12 year difference between me and your Husband.  If he is in good health other wise I would say you need to decide if he wants to try something now as if it gets to far along there is certainly a tendency for more mets and growth.  Some people have said completely no to chemo and chose to let nature take it's course.  I am so sorry your husband has been touched by this disease.  There are new drugs out now and plenty of trials going on.  I would try as hard as possible to keep a positive state of mind.  Once you let your guard down and get deeply depressed in my opinion you will be selling yourself short of precious time with loved ones.  I'm not saying thats the case all the time as some of the most postive thinkers and people supported with overwhelming love did not get much of a chance to fight at all.  In my opinion hope is in the air and I continually look around the corner for that miracle.  Remember to get more than one opinion not just from an Oncologist but surgeons as well.  There have been many cases seen where one specialist say no and then another says yes.  Some hard choices to make is now upon your husband.  I wish you the best! 

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Still well 12 months after diagnosis

Dear Joyce and Jeff,
Thank you so much for your kind massages, I cannot tell you how much it means that complete strangers care enough to offer comfort. My husband has a CT scan on Friday this week and we will see the consultant on Tuesday to discuss the results. We will keep an open mind and I will also bear in mind your experiences. The consultant is great he is letting my husband make up his own mind and not pushing chemo at the moment, but if he does suggest it might be a good thing, we will be guided by him. I think he said he would start on Gemcitabine first as this is best tolerated but if that didnt work he may add oxiplatin or cisplatin.  I asked Ray if he wanted to do anything while he was still well and he said that he had done everything he wanted to do, just would have liked to do more of the same. He has three beautiful daughters and thre lovely grandchildern so he says he has left his legacy to the world!
Many thanks
Sue

Re: Still well 12 months after diagnosis

Good luck to you and let us know how the doctor visit goes. Sounds like you have a good relationship with a doctor you can trust, which is so important. And your husband sounds like he has a great attitude!!
-Joyce

Re: Still well 12 months after diagnosis

Thanks Joyce, I will let you know the visit goes.
Sue.