The Reluctant Doctor - Cancer: Lung Message Board

feetofclay · 10-31-2007, 08:54 AM

I posted a message sometime ago about the joint pain my husband was having in his thumb. The pain has now progressed to both shoulders and some pain in his back and he is having difficulty in swallowing. We went to the doctor and basically had to insist on a bone scan. His oncologist seems to not always give us the entire truth. I have not figured out rather it is to spare us or rather I am just assuming the worse. The doctor has already informed us that he can not receive any further treatments because his body just can not take it. We also asked for a PET scan several months ago, but the doctor said it would not benefit us in knowing. My husbands cancer had spread to his lymph nodes when he underwent surgery. He has stage 3b NCLS. They did not remove all the cancers cells at time of surgery. I am really beginning to wonder if the surgery should have ever happened.

On the visit prior to this one he had a CT Scan, the doctor said that everything looked OK and he basically left it there. Then I asked him about the spot and enlarged lymph node they saw before and he said, "yes that is still there and we noticed something odd with your Liver but I am not going to worry about that is could just be scar tissue."

If I had not asked the questions he would never give us the entire story. Am I just crazy or what? Or is this doctor just trying to paint a rosey picture and has an idea that things are not right?

HELLASRULES · 11-01-2007, 08:50 AM

Hi FeetofClay
I don't think most oncologists tell you the whole story. They are mostly concerned with the "main" disease and anything that is immediatly life-threatening....at least that's what I see with mine.
This is why I always ask for a copy of the radiologists reports on the ct scans, and ask about by blood counts etc. Some people don't want to know, then there are people like us, who do.
It's a patients right to have copies of ALL his records, so start asking for the reports. Doctors may not like it, but it's the law.
Faith

Janmarie2 · 11-01-2007, 12:46 PM

I am with Faith on that one ALWAYS ask for a copy of any tests, Blood tests, Xray or CT reports etc,as you do have a right to have them. Then keep them in a folder at home and feel free to ask the doctors about things you see on them that you do not understand. If you have a doctor that tends to pull the " well I do not have the test results in front of me" excuse to avoid a question and for some reason will not pull them up on the computer then pull out your home file and show him the results!

carol1961 · 11-01-2007, 05:32 PM

I found the same thing w/ my mom...the "need to know factor"...after first 2 cycles of treatment...i called seperately to the Dr....as he told us that "things were moving in the right direction"...my mom is one who does not want to know all the answers....she was elated...but my sis and i could read the body language and the tone...he did not seem as elated as my mom was after....when i spoke to him privately...he told me he was hoping for a better response...as her left lung was still partially collapsed from the tumor....that was the first time we had heard that her lung was ever partially collapsed...that taught me to keep asking and clarifying...to us...that is an important piece of info...but it was small in the larger plan for him...