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I did something REALLY stupid!!! LOL

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

One of the first things my oncologist told me was to stay off the internet...I did good until today but my curosity got the better of me :(

I read the paperwork that I had to give to the technologist that my rad onc filled out when requesting the PET scan and it said "restaging". This has bothered me so I researched it and found this.....

Restaging. This refers to imaging following treatment in two situations. Restaging is part of the evaluation of a patient in whom a disease recurrence is suspected based on signs and/or symptoms. Restaging also includes determining the extent of malignancy following completion of a full course of treatment.

Needless to say I will now worry needlessly until I hear from my doctor next week. The reason I am posting this is in hopes that everyone else will learn from my stupidity. When your doctor says not to research anything pertaining to your cancer on the internet take his advise seriously and DO NOT look for answers on the internet.

It could still turn out to be nothing, that's what I'm holding out for, but I just wanted to remind everyone to listen to their doctors...I wish I had - lol.

Staying strong,
Glenna

lekkerone
Posts: 199
Joined: Jan 2011

I am so sorry you looked and know how hard it is not to. Because I was never staged and didn't really get a diagnosis for sure until after the surgery, I looked up a lot of stuff that ended up not even applying to me but in the process scared myself silly. Yes, it could still turn out to be nothing and I hope you can hold on to that thought.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Doctors hate patients on the internet, for sure. It's sort of like Dagwood Bumstead standing behind the plumber trying to give him advice. We should let the professionals do their jobs.

Still, there is something to be said for expanding our knowledge of what is happening, what is going on. That you discovered some things that might be less than appetizing to your emotional palate does not mean that you have done anything wrong. I think, Glenna, that we are better off with knowledge. I DO suspect that some people go to the weirdest places to get their 'knowledge', but I think we are better for knowing what is happening.

That said, I wish you the very best, my friend.

Take care,

Joe

PBJ Austin
Posts: 347
Joined: Mar 2009

When my sister was first diagnosed with brain cancer I googled everything and I nearly went crazy because nothing I read about her illness was good. Then I found this site and that was the best thing that could have happened. This site also helped me a few months later when I had a lung mass and subsequent lobectomy.

So in hindsight I'm glad I did it because it led me to this site. But otherwise not much good came from it.

Wishing you well Glenna.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Glenna I will be thinking about you on Monday and wishing for the very best. I hope your doctor will get back to you quickly with GOOD news! Anita

catcon49's picture
catcon49
Posts: 398
Joined: Aug 2008

Sorry I haven't posted more, but I'm very involved with planning my oldest daughters wedding. But I would have done the same thing. I look everything up on the internet. Good or bad, I agree with Soccerfreaks, information is power. That doesn't mean everything I find is correct. I dx my husband with ALS. Thankfully it wasn't that. But anyway that's a whole nother can of worms. I don't know why doctors make us wait till MONDAY, is it to ruin our weekend? Because, I think anyone who has had to wait until Monday for cancer test results, surely did not enjoy the weekend. Stay strong and even though it is almost impossible, try to relax. If something is on the PET you will have plenty of time to worry about it after. Wish I could be of more help. Wishing you the best.

c

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

So true, re Monday! I've often wondered that myself. Can't remember how many times "Results next Monday" was a weekend (or holiday) buzz kill for me :).

Take care,

Joe

luv2cut1's picture
luv2cut1
Posts: 288
Joined: Oct 2010

Being one that looks everything up on the internet often to my detriment, I know the anxiety it can cause. The only thing I can add is that sometimes the doctors have to use certain descriptions in order to get scans approved by the insurance company. I don't know your situation, but even if what you read on the internet about restagimg is correct, it may not be what it seems.

Here is to praying for GOOD NEWS!

Myka

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

A couple of times I've had to wait til Tuesday for my results because Monday was a holiday - lol. One day doesn't sound like much but to most of us it's just more unneeded stress.

Thanks everyone for letting me know that I'm not the only one who researches on the internet, even though I know I shouldn't.

Catcon - hope everything is coming along perfectly for your daughter's wedding!!

Myka - I've heard about some doctors having to use certain codes to get things approved for scans but I didn't like the other choices that were listed with restaging...one of them was diagnosis but can't remember the other two. Either way, no sense thinking about it til Monday. I'm sure I will be posting good news!!!!

Kimmiann
Posts: 46
Joined: Feb 2011

Glenna,

Restaging is one of the better dianosis for the oncologist to use to get the insurance company to cover the PET scan.

Kim

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Thank you Kim, I don't have good insurance so maybe this explains the "restaging" on the request. Thanks for easing my mind...I'll know for sure tomorrow...I hope :)

Thanks again,
Glenna

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