I read my medical record...big mistake

[klryder02]

I did a bad thing today.

I got a copy of my medical record yesterday, and read the whole thing today at work (seeing another oncologist next week).

Bad, bad stuff. I know that I am stage four, and I understand what that means, but I feel like I didn't know how bad things are.

I read the oncologists comments after he saw me for the first time, and it basically says that because of how much it has spread, it's not curable.

I have reacted to chemo very, very well, and I tried to keep tellling myself that, but it is hard.

I need some positive thoughts, comments.

Also, should I be worried that I have some type of gallstone, but no one has bothered to mention this to me??

[janb]

I think you'll find many survivors here that will tell you that they were told the same thing. I'm not saying that what the doctor said in your report may not be true but what I'm saying is that I've read many posts from people that were told the bad news and are still here. Hang in there and I'm sure you will be given some positive reinforcement. Best Wishes.....

[meighan]

That sucks, i have read my husbands as well and the word unfortunate came up a few times................ my stomach lurched.Here is the thing though they are written very coldly very scientifically and they do not embody you nor can they look into the future and see a thing they are just a snap shot from that moment.

I would follow up and ask about the gallstone as you should not be in the dark about anything regarding your health but i wouldn't worry too much if it hasn't come up in any of your MD conversations.

Good luck with your second opinion and celebrate the good response you have had to chemo that is good news don't let this take that away from you.

[betsydoglover]

Hi -

I don't post here very often - (age 57 and I figure this board is mostly for younger folks) but I am a Stage IV colorectal survivor. And, your post really struck me.

The absolute worst thing I have ever done was to read my medical records. Not only is the "information" scary, but mostly medical records are fairly dehumanizing (at least when read by a patient), even if you have a great relationship with the doc who wrote them - reading about "the patient" suddenly makes it feel like YOU aren't even a factor anymore. At least that's how I felt. In addition, even though I have had a very positive attitude throughout this whole experience, reading an "official" record that talks about your adenocarcinoma somehow makes it seem more real and more scary.

As I told a doc at NIH when I was evaluated there, there is nothing worse than reading medical stuff written ABOUT you, but equally, it is impossible not to read!

Please try and be positive - sounds like you are doing well so far - just package up those records and put them in the back of a drawer and try not to go back and read them. (Mine are in an envelope with tape on it, so I have to make an extra effort to peruse them again!)

Take care,
Betsy

I did a bad thing today.

I got a copy of my medical record yesterday, and read the whole thing today at work (seeing another oncologist next week).

Bad, bad stuff. I know that I am stage four, and I understand what that means, but I feel like I didn't know how bad things are.

I read the oncologists comments after he saw me for the first time, and it basically says that because of how much it has spread, it's not curable.

I have reacted to chemo very, very well, and I tried to keep tellling myself that, but it is hard.

I need some positive thoughts, comments.

Also, should I be worried that I have some type of gallstone, but no one has bothered to mention this to me??

[rthornton]

Even the good news can sound dehumanzing. Here's a quote from an email I got from my oncologist's assistant, telling me the results of a CT/PET: I finally got your PET/CT scan results and there is no abnormal hypermetabolic activity to suggest recurrent or metastatic disease. Well, later in the note, she told me to go out and celebrate, but the language of a lab report does lack personality, doesn't it? I like it that way, actually. It keeps things unbiased and, hopefully, will not lead to misunderstandings.

I have never read my entire medical record. Now I'm curious to do so ...

[bossan]

Kyle,

Stage IV here, mets to liver and abdomen, incurable, given 2 months, had great progress with chemo, then the cancer fought back. That was 2 years ago and I'm still here, anwry and refusing to accept it. I read all my reports, wife is a medical person so I know what it says, it always creeps me out, but it still doesn't seem real.

I won't let any docs give me a time line and I always ask what has to happen to switch to curative and not palliative care. They all say it is not likely but I don't give up.

I'm always joking during exams, chemo or whatever and my onc once said to me "look. this is really serious" meaning, she thought I wasn't getting her prognosis because I'm always joking and smiling.

Read my story, link on the bottom....hang in there. There are many things that they can do and I know several people who beat cc with chemo only. There are all kinds of miracles.

Love and healing!

[missjv]

HI,
WELL I AM ALSO STAGE 4 AND I CAME TO THE CONCLUSION IT IS WHAT IT IS AND I AM DOING EVERYTHING POSSIBLE AS FAR AS TREATMENTS GO AND THATS ALL I CAN DO. I ALSO SMILE AND JOKE WHEN I GO SEE DOC BECAUSE WHY WALK IN THERE WITH YOUR LIP DRAGGING THE GROUND? MY 1ST DOC TOLD ME I WOULD BE DEAD IN 2 YEARS AND I LAUGHED AT THAT RIGHT TO HER FACE. THERE ARE PEOPLE WHO HAVE BEEN CURED FROM STAGE 4 DISEASE AND THERE ARE MANY LIVING WITH STAGE 4 AS A CHRONIC CONDITION. I KNOW READING YOUR RECORDS MUST HAVE SUCKED BUT JUST BECAUSE DOCS WROTE SOMETHING DOES NOT MEAN IT WILL HAPPEN AND SINCE YOU HAVE HAD A GOOD RESPONSE TO CHEMO THAT IS A GOOD THING. TRY NOT TO WORRY ABOUT WHAT WAS WRITTEN AND THINK ABOUT HOW WELL THE CHEMO IS WORKING.

MISSJV

[pjpeace]

MissJV & Bossam: you guys ROCK! i LOVE your attitudes!!! I'm always joking with my doc's (or leaving them speechless...made a surgeon blush one time...that takes talent)!

yeah i know in the beginning my first surgeon and my oncologist weren't givng me very long. I was talking about that with my onco. the last time i saw him. i'll be seeing my first surgeon next week to give him the good news (had my second surgery somewhere else since it was more complex). i know he felt uber bad that he couldn't get all the tumor out in the beginning. ya know surgeons want to get the whole thing out. but glad he didn't cause it was only a 10% survival rate at that point.

No matter what you read in your reports that's also 'doctor talk' too. i'm sure they have to remain detacted so they don't get emoitionally involved with what's happening to you. not that they don't care but a way of detaching to deal with your treatment. they have to reamin that way to think clear enough to really help you. the best day though was when my onco. came into the room with a HUGE smile on his face though...that's when my CEA went down to <.05!

also, just think of what is written is a snap shot of where you are right now. it doesn't mean that you won't respond to treatment or things won't change. unfortuneatley when i heard from a friend who has a friend who works in a cancer center they dont' get many good stories. but there are us out there who fight back with everything and refuse to give up and end up changing that. i don't want to know about statistics about my survival. i did ask my doc about reccurance and he said 'very high but you're welcome to prove me wrong.' and i thought 'ok now we're talking!' he's gotten to know me well enough that i'm not giving up!!!

with you responding that is an extremely good sign. it shows that the treatment is working. keep up the good work ; ) don't ever give up!!! doc's don't know everything and you don't know what the future holds. you know yourself better than anyone! be stubburn dig your heals in and refuse to give in!

[missjv]

hi,
well i read something today that made me smile it said 40% of stage 4 cancer patients with liver mets are alive 10 years after diagnosis. thats a huge deal compared to statistics from years ago. that info was in people magazine in an article about elizabeth edwards they had a little write up about tony snow in the same section. there are so many new treatments available people are now living with cancer instead of dying from it as compared to years ago.

missjv

[Sweet Peg]

I hate statistics! Most of those Statistics are based on survivorship way back in 1998 or 1999!!! So many new procedures and treatments have come out since then!! You have to remember that each person is different, attitudes count for A LOT and doctor's can't factor in God as that isn't Scientific!! LOL NEVER give up and forget about those medical reports!! That doctor has no idea what God has in mind and he has no idea how positive and how much FIGHT YOU HAVE!! You just remember one thing.......... ALL THINGS ARE POSSIBLE!!!

Hugs Peg

[lamerex4]

Please keep in mind that medical professionals only put the cold, harsh facts in their charting. The primary purpose of charting is to document the medical data pertinent to the patient's condition and treatment. It is written in such a way so that if read in a court of law, their fact-based decisions, recommendations and treatment can be defended. Charting is in no way a commentary on the doctor/patient relationship.

[Bryan S]

Lamerex4 is right. The other reason it seems so dehumanizing is so the person treating you can cope with it. They must seperate themselves from you so they don't go into major depression themselves. Be thankful there are doctors, nurses and pharmacists who feel they need to treat cancer patients but don't be mad that they have to treat you like a piece of meat. If all you do is see people who are affected by this disease it can be pretty hard on a person. Personal involvement makes it very hard.

[Magnolia]

I sneaked a peek at my records too and just seeing words I never thought would apply to me was I shock I didn't need. There are lots of long term survivors of Stage IV CRC. Some are NED and some are not. The important thing is they are surviving. Keep in mind that 100% cure is not the only way to live with this disease. Many people live with recurrances for many, many years. The more time current treatments can buy, the more new and amazing treatments will be developed. There's lots of reason for hope. And now a plug for my favorite book, "The Anatomy of Hope" by Jerome Groopman. I think it was written just for you.