Colon Cancer Support Group

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

@Graci01 - It's a difficult situation right now the relationship I have with my oncologist is not the best, but on reflection is it him or a reflection the system, I have to wonder these days how much time they have to research things that might help us, do they take their work home with them and carry on doing research on their own time or given how much bad news they often have to give out do they completely leave their work in the office.

I think these days Dr's stick with black and white facts and are not prepared to stray beyond the facts because with black and white facts they have a defensible position, so when my CEA was elevated but still within the normal range they said all was fine, even though when I'd previously had extensive disease my CEA was only just outside the normal range.

Now days I do as much research as I can on my own and don't assume that the Dr's are fully informed about everything, and push them to go and find answers if they can't answer my questions.

I know I do more research too. I understand they go by the standard protocal but it does not work for all patients.

I wish I could have just talked to my Onc! All questions had to go through the Techs?

Early on I researched so things and copied and pasted the info for him and it was not all that long.
I told the tech since I can never see him and ask questions what I had done. I left the paper on his office desk and told one of the techs' and she said "Grace he don't read things I put on his desk"

You are right they stick with the black and white and NO I don't think they research much of anything. (Some may) I did not have much of a ONC! The Mistakes he made with me were more than plenty. (He always had me mixed up with another woman?)

That is not at all comforting! I don't dislike Doctors at all.
I have worked with them and found most to care about what is happening to their patients.

Sorry I was so angry but I still can't say I had a decent Onc.
graci

sorry for the multiple posts, the internet/DS was having a wobble last night

Markarena, those are the same thoughts that come to mind. Just spoke with the on call onc since mine is out of town yesterday about stopping oxy. He tells me that all chemo is a carcinogen, (different answer from my onc), and if he were in my shoes ( he's 40 something), he would take both oxy and 5fu as tolerated ( since I'm not showing extreme symptoms). He said I would more likely chance get hit by a bus crossing the street than getting reccurant malignancy. So when I read your post, it was exactly what I was thinking.

I'm at the joyful stage where I'm looking to chemo again, as my cancer is slowly increasing, although I am still totally symptom free as the cancer is in my abdomen rather than colon, and because of it's location is now inoperable.

So giving I don't tolerate 5FU (I have an allergic reaction to it) very well I am looking at alternatives ... just hope the onc tomorrow doesn't recommend 5FU as I might get a little angry with him, as it would be case of him not reading his notes properly!!

It seems like most who have taken the Oxi have had issues that cannot be reversed. I'm so glad that I didn't take it. One of my nurses whispered to me one day.....'good for you for doing your homework! People have been taking just the 5FU succussfully for years. You will be just fine'. One of the physicians assistants told me pretty much the same thing.

It's so sad to think that some doctors put the $$$ in front of the treatment.

Mark I don't know what it is? I have been embarrassed (when I should have been infuriated)

We take all the time to write out 'EVERYTHING' and what we may be allergic too, all of our symptoms, only to be hit with something so far off the wall when the doctor comes in.
It makes you wonder just what they have read? (if anything?)

I have been in a car accident, received severe whip lash and a brain concussion. To make this short I really needed P/T. My GP could not prescribe it because of numbness on my left arm and two small fingers. No pain and I could move them fine, but I had to see a Neurologist first to make sure my brain was not causing the numbness! OK I made the appointment and filled out everything. (All I wanted to do was start P/T) I even stopped at my Hospital and got all the records and the disc of my brain showing the concussion.

In comes this Neurologists and does all kinds of tests sticking needles in my hand and arm. The next visit he comes in with a big smile and says you have carpel tunnel? Probably from keeping your elbows on your desk?

I was a Nurse, Floor nurse and hardly ever set except to chart.
I was floored at what he said. I finally spoke up and said I am 'HERE' to make sure there is nothing wrong with my brain from a car accident. (I don't usually sit at a desk and have not my entire life)
WOW! He wheeled around in his little stool and I think for the first time looked at all my reports, The brain disc, (Which I am sure he had never looked at)
I said I only want a clear report so I can take P/T, and my arm even numb does not bother me.
Only then did he report to my GP, and said my concussion should totally be clear in a year (or maybe never)
That 'maybe never' meant I could never work again!

HE knew very well (I KNEW) he had not even looked at my file except to see numbness in left arm. He did say I could take P/T, which only helped me up to the 60% area! (I had hoped for at least 80%)

Much more to the story, but goes to show they don't read your files.

I would like to go (if something else happens) and I pray it doesn't and when they give me all the papers to fill out in detail, just say "NO" why should I bother when they won't be read anyway?
We do all that to cover their butts, if something goes wrong.

I wish you the Best Mark!
graci01