Topic: Deciding To Continue To Do Nothing

Hi All:

Haven't written much here in a bit, though I do read pretty regularly -- it feels like checking in on extended family when I visit here.

Briefly, here is my current situation: tumor first seen in April 08, finally diagnosed in July 08, failed surgery in Sept. 08.  I have the intrahepatic kind of tumor, anywhere from 5.5 to 6.5 cm when last measured. No symptoms except for fatigue, which is bothersome but consistent. Liver function and other bloodwork remains generally normal, except for CA 19-9, which has risen from roughly 69 to 85.

Based on all of my own research and consult with various docs, I opted to decline treatment after the failed surgery -- I felt and feel as if chemo will do more to upset the delicate balance in my body that is, at the moment, keeping symptoms at bay than it will benefit me.

I was supposed to have CT scan and assorted further bloodwork in December but cancelled it. My thought was that since I am opting not to do treatment (at least until symptoms, and at that point I am not sure how I will proceed, since chemo, in my opinion, does little good for this vile cancer) there is no particular point to regular CT scans except to make me upset.

I had planned, however, to have a scan in April, which seemed a good timeframe since it will mark a year since the tumor was first seen.

Now, however, I am rethinking that, and wondering if there is an argument (other than my own magical thinking) against having any further CT scans/lab work until symptoms appear. We know that size and growth of tumor do not necessarily serve as gret predictor of progress of illness, and it occurs to me that if I find out, for example, that the tumor has doubled in size, it will be terribly upsetting but doesn't necessarily "mean" anything.

So -- and I apologize for this long post -- I wondered if others would care to offer an opinion. Part of me also feels like having as much control as I can is a good thing, and that means knowing, exactly, what the tumor is up to and whether there are more. On the other hand, there is something to be said to living a life as long as I can "as if" I do not have the tumor, so is it better to keep my head *and my bile duct) in the sand?

Thanks for feedback -- and courage to us all.

Irene

Re: Deciding To Continue To Do Nothing

Hi Irene,
Glad to hear you're doing pretty well, symptom-free and all. I think you're the only one who can really answer your question, and I'm here just to say that I support whatever decision you make. It sounds like you're leaning toward the "magical thinking" route -- and hey, there's nothing wrong with that! I think I would use that approach, too, because that's typically my way of dealing with upsetting things. It all depends on the person, and if your anxiety level will be less if you don't get the scans, then by all means, opt for less anxiety!

Whatever you do, we're here for you. Sorry you have to make such a momentous decision.

Best wishes,
Joyce M

3 (edited by Ron Smith Sun, 08 Feb 2009 04:21:24)

Re: Deciding To Continue To Do Nothing

Irene

I understand exactly what you are thinking as this was my outlook too.  My only word of caution is to be sure that it will not be too late for any treatment once symptoms show.  I realise the treatment will be palliative rather than curative but perhaps your view on the need for treatment will change if symptoms become apparent.

I do not wish to give you my advice but, if it were me, I would be maintaining close contact with my doctors and would want to know, as far as possible, what the cancer was up to.  But, like everything else to do with this cancer, the decisions are and must remain, your own.

Very best wishes

Ron

Re: Deciding To Continue To Do Nothing

Hi Irene,

I do not know your age or life situation, but your health and outlook sound nearly identical to my father. He is 86, has a very large tumor, but other than weight loss, has no symptoms. He tried TACE, but they were only able to access once. We are considering sirspheres.
He has indicated that he doesn't want to be made sick or take the chance of pushing the cancer faster than it is progressing untouched. So, he has ruled out any chemo. This is the most difficult of choices for those close to the decision maker, while it seemed very clear cut to him. He is fully aware that by the time he has symptoms, it may be too late, but says he would rather feel good while he can. I guess you don't live to 86 without considering your own mortality and how you want to go.
I think for him the other consideration was the he didn't want to spend what time he had left managing a treatment schedule and running to doctors.
I spoke with a friend who is an nurse and works occasionally on the oncology floor. Her advice was that under no circumstances would she advise my dad to have chemo. She put it simply that it is not worth it. Those few words made me feel infinitely better about his decision.

Here is a Washington Post article that I read that I found comforting regarding his decision:

http://www.washingtonpost.com/wp-dyn/co … amp;s_pos=


Good luck to you!

Jan

Re: Deciding To Continue To Do Nothing

Irene,

My husband did not know he had CC until 1 week before he passed on at the age of 62. He only started to have symptoms about 2 months before that. We thought he was normal & healthy until then. Never had any real health problems.  Unlike your situation, we did not have to make a decision. It was made for us. by the time we knew what we were fighting, it was so far advanced that the fight was almost over. At first I was angry, thinking that if it had been discovered sooner something could have been done.  After learning more about this cancer & reading on this site, I have come to believe that what happen was for the best. He lived a full life until those last 2 months not even knowing what was coming.  No one can make a decision for you, it is yours to make.  If it were me, after what I have experienced & learned in the past 6 months, I would rather let well enough alone until symptoms present & make a decision as to what to do next at that time.

Every one is different and there are so many things to consider, but you seem to have done your homework and thought things out pretty well already. You appear to be a very self assured, strong person & I know that you will be able to make the decision that is right for you.

I will keep you in my thoughts & prayers and hope for the best out come for you. Remember that we are all here, just a key stroke away, to help & support you all that we can.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Deciding To Continue To Do Nothing

Hi Irene.  I'm glad you posted as I have been wondering about you.

Everyone here would respect your decision as to what to do regarding treatment.  I just want to put my 2 cents worth in.  Although the experts say that chemo is only pallitive, I think that for some people it really does work to keep the tumor at bay for a while.  You just have to decide if its worth it.

Re: Deciding To Continue To Do Nothing

Irene,

I too am glad to hear fromy you and have been thinking about you and hoping you were ok.

The decision is very personel and no one can help you. I am deciding to fight, mainly because it is true that when I think back on my life, it is the things I didnt do that I regret.

I think you make the decisions that are right for you. Listen to that inner voice and 95% of the time, you get to where you need to be.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Deciding To Continue To Do Nothing

Hi Irene,

I guess I am going to be really outspoken.  But in no way is this any type of judgement on your decisions.

Our symptoms are very much alike. My CA19-9 level is 128, normal liver function bloodwork, and I too have been through a failed resection but I did choose to get chemo.  It was nowhere near as bad as I imagined it to be, but everyone's tolerance is different.  With chemo, even with my fatigue, we were able to get into a more "normal" routine.   It is possible to have a happy life even while going through chemo or other types of treatments.  Just not the same happy and routine we knew before.   

Irene, I have had to separate what I wish would be with what actually is.   I wish my body could stay exactly as it is, virtually no symptoms, cancer not progressing.  But I know it won't.   I feel that if I do nothing, it will without a doubt spread to other parts of my body.  I have to do everything I can to extend my life. 

I have chosen to be very aggressive in my treatment with the hope and faith that I will be here longer than if I'm not as aggressive, also with the hope and faith that the physically hard parts will all be worth it.  So far I believe the path I'm on has been worth the hard parts.  Emotionally it would be hard either way.  I have been given the opportunity for another attempt at resection and I am going for it.  Part of what brought me to this decision is, my fear of this cancer is greater than my fear of having surgery again.  Also, like Kris, I do not want to have regrets for the things I didn't do.

I wish for you peace of mind with whatever decision you make.   That is a huge part of the emotional battles we all are waging with this cancer.

- Suzanne

Re: Deciding To Continue To Do Nothing

Hi All --

I want to thank you for your considerate and heartfelt replies. There are different opinions out there, as I expected, and I appreciate all of them.  Especially you, Suzanne -- we started in similar places and I completely understand the decision that you made.
I don't know how I will proceed. I know that on some days, the whole "is today the day I begin to die" thing gets pretty old and I don't see much point to...much of anything, really. But I guess that is to be expected.

Peace and courage to us all,
Irene