How to go keep from going nuts with medical reports

[norme]

Today was Buddy's visit to the radiation onc and we thought he would be having treatment for mets to the left shoulder. The onc was up on another floor talking to the radiologist regarding the x-ray report. In laymen terms, the report say because of the lung cancer the possiblity of metastatic neoplasm cannot be ruled out. But, it could also be a chronic rotator cuff because degeneratiove changes are noted at the AC joint. Needless to say, no radiation and Buddy is going to get another test on Monday. He can't have an MRI which would show a more positive report but the radiation onc doesn't really think it is mets. So much for that. Great if not.....

Then I said to the radiation onc, what about the liver. What does the Ct say about it metting to the right side of the liver now???? I know I was told this or I sure thought that is what the chemo onc told me by phone the other day. He read to me the report then he read it two more times to himself. He said he is taking the CT scan to read a pretty good report...He doesn't see anything about mets into the right of the liver. He said the report shows that there are again seen several low attenuation lesions within the upper liver, consistent with metastases. One of these, in the left lobe, has decreased from 1.7cm to 1.3cm. This was all compared with a scan on 7/15/03. That report talks about a prior study on 4/4/03 and so on....TAlk about confused, the radiation dr again said that he was reading the report as good news. At that point I asked for all Buddy's medical reports and had them within 10 minutes. Brought them home, put them in order from 8/02 to present and intended to take them to the chemo onc on Tuesday and try and get him to explain to me whether Buddy really has liver cancer or not because from day 1 there is always reference to liver CYSTS. Always got the scans done at the local hosp until 7/15/03 when was sent to another place and that is the first talk of the "can't rule out liver mets" and what I said above. Oh to have only been educated in the field of Medicine....

Also in the medical records I found a statement in 7/03 that says "the patient recently was found to have progessive disease in his liver and LUNG. LUNG????

Tomorrow, I am going through these reports and note each statement about what was thought to be liver cysts in the right and left part of the liver (all reports from the sames place) until the new Diagnostics Center's report listed the liver as mets...then I will take it to the chemo onc on Tuesday and try and have all of this explained to Buddy and me....METS OR NOT METS. STAGE 4 OR STAGE IIIB as i also saw reported in the reports up until the liver came into play....oh, how confusing and very hard to understand.

At one point we am feeling good thinking there could very well be a big prob in these reports but then again, maybe I just don't understand medical reports. I sure hope I am right......but can't count to heavy on it....however, I still feel that drs don't always know what all the reports say after a period of time and could be wrong on this call....will ask for a ultra sound on the liver. In these reports, it constantly says an ultra sound would be advised and none was ever done to my knowledge.

Its bedtime- goodnight everyone, please sleep peacefully tonight...I am praying for all of you survivors and families. God Bless

PS you are probably scratching your heads and saying "what does this say", for I am....night

[Tiny]

Norm,

It is absolutely a TRIAL-by-Fire to try to keep up with and understand all the oral AND written reports. I think you are wise to ask for the written reports and to keep them chronologically in a notebook. Sometimes I think the doctors soft-pedal what they tell us face-to-face, and sometimes they make mistakes, just like the rest of us. It's a good idea to take an active role in tracking everything everyone says and writes. I would not only get copies of all scans, tests, etc., I would also ask for each onc's or rad's transcribed chart notes of their vision of what was discussed or decided in ANY visits.

I KNOW this stuff is making you absolutely crazy...who wouldn't it???? I'm praying hard for the BEST outcome concerning all the conflicting information. Go get 'em, Norme. Your Buddy is lucky to have you batting in his corner and deserves only the best.

Much love and many hugs...don't let the bed bugs bite.

[dadstimeon]

Hi Norme,

I know exactly how you feel. What works for me is I have a fantastic oncology doctor who I have complete trust, faith, and confidence in to guide me thru my journey. She is the captain of my Health Care Team and I get all my information from her rather then try to have several people decipher what’s going on. Then with her guidance I make my decisions. I find this a lot easier to deal and cope with and it is also less stressful. Plus what Tiny says I also do. Take care and God Bless.

Rich

[norme]

Goodmorning Tiny and Rich,

I did get all the records and have put them in order by date. I don't think there are any others.

I also have/had a lot of faith in both onc's. They do work together but in different fashions. One does the chemo and the other the radiation however, it is like I had said back about a month or two ago on this board that these drs cannot keep everyone's record intacted in their minds and they too rely on radiologist reports and any other report that comes through and that is what may of happened here....maybe. Switching scan companies from the hosp to a private company because of what one dr forgot to remember that Buddy could not have an MRI was the only reason for the switch and that is where the liver prob goes from cysts to mets??? Of course it could all be correct that there were cysts but now there are mets but won't know until Tuesday. Just seems a little strange that it happened when scan places were changed...

I know drs make mistakes, they certainly aren't God, and they can only do so much. They are not our private dr. They treat hundreds constantly and are in so much demand. What upsets me is,,,,will let that go till i see if the report is right or wrong. I very well could be wrong...what do I really know about lc, - - not much....and what do I know about all of this medical talk on the reports, - - not much.....I just have this funny feeling inside that they could be cysts or I am hoping that they are so bad....

[Rick]

Doctors should not make mistakes at all.

I know drs make mistakes, they certainly aren't God, and they can only do so much

Ask yourself, Would you be saying the same thing about an Airline pilot?

There is no excuse for a doctor to make any mistakes.

[Jenny G.]

Norme,

I agree with how confusing this all is and I can't begin to understand all the medical terms. It's hard to get clear answers sometimes. I think I saw someone post about talking to the actual person that read the scans and getting clarification from them in layman's terms. That sounded like a great idea to me. We are paying for their services and yet I've never talked to any of them. Has anyone else done this?

Jenny

[Guest DianeP]

Hi -

I'm catching up on some of these posts...read your previous one, and this one sounds much better!! I hope and pray for the best for your Buddy.

I think I understood your post, but no where do you mention having a PET scan. Is this something that you have had? My dad was told he had cancer on his liver as well, and it turned out to be a pretty normal benign tumor that was proven by the PET scan. No test is a 100% accurate, but maybe if you get the CT scan and PET you can determine what exactly is happening. But then again, I just might not know enough of your history.

[norme]

Diane -Buddy had a pet test back in 08/02 and they the liver did not light up. They have or should have known that he had cysts since 8/02 in his liver. They showed up on all scans since then but only since 7/03 when the scan was done elsewhere did it talk about mets in the liver...will know more tomorrow.

Jenny - I tried getting in touch with the radiologist back in 07/03 regarding the liver mets. She never got back to me. She works parttime as if that had anything to do with it. That is what I was told after trying twice to get her....

This nightmare will be over tomorrow when we go back to the chemo onc. I am going to insist on a new scan to be done at the hospital where all the previous ones were except for the lastest two....unless he shows me how I am reading all of this wrong......

[norme]

Rick, we all know that everyone can and does make mistakest. Don't like dothe thought but no matter how we say it shouldn't happen, it does....that is what lawyers do often, place suits against the medical profession. Just recently I read where they took the wrong leg off from either a man or a woman.

About airline pilots, I would guess some planes went down because of pilot error too....in fact, just recently they blamed one on pilot error but can't recall where.....

There is none of us who haven't made mistakes in our lifetimes...we can only hope mistakes don't cost lives.....

I sure don't like to think there may be a mistake but it sure looks that way to me, but again, I am not a medical professional and it could all be correct. Will find some of it out tomorrow.

[Snowflake]

Thanks, Norme, for keeping it in perspective! Doctors are HUMAN (even the ones with bad bedside manner). Were it not for having a VERY human primary care physician who loves me to pieces, I probably would not be aware of the monster that was growing inside...

Wish you all the best (and that I could do something about the stress you are going through while waiting...)

Becky

[Connie B]

My Dearest Norme and Buddy,

I sure can understand what your saying but these days I am limited to my ability to share constructive conversation So, rather then try and type out some good advice or swap stories with you, the best I can offer you right now is:

((((((NORME AND BUDDY))))))

A huge warm and loving hug to my dear friends. You and Buddy are always in my thoughts and prayers.

[norme]

Connie,

Thank you for taking the time to post a message to us. I sure do miss you on board. Can't wait till you are back to normal (whatever that is) and post all your wise thoughts to us. God loves you very much Connie and all of us here on board do to....