Misinformation --- So Cruel.....

[Danielle30]

I know there is nothing I can do, but I am just venting.

So, mom had a CT scan back on 1/12. We had been waiting on the results which were due at her next onc appt on 1/22.

Then on 1/19 we go in for her daily radiation. The radiation tech tells mom that there is good news and she wants to give my mom a good report. Then this tech proceeds to show my mom 2 xrays of her primary tumor, her orignial, and her newest one that shows her tumor is shrinking. The tech told her it has gone form 7cm x 4cm to 2cm x 2cm.

Needless to say we were elated. Mom was so excited to see it working. The family was ready to have a party over this news (understand it is the first news we have gotten since her dx). We were genuinely excited.

So on 1/22 we go to the onc for the CT results, expecting good news. You can imagine our surprise when the onc tells us there has been no improvement at all and she now also sees possible mets on the liver. We were stunned. We tell the onc what happened in radiation and she says she doesnt know why were were told that as it is incorrect and she'll check into it. We left there devestated.

1/24 mom has chemo scheduled, my dad goes with her determined to get to the bottom of this. While mom was in chemo dad was all over the cancer center trying to find out what is going on. Turns out the radiation tech was wrong and never should have been telling my mom anything to begin with.

Has anyone had something like this happen to them?

I just find this to be so cruel to do this to my mom and our family. I feel like we were given hope and then it was ripped out from under us.

I realize there is nothing I can do now, I think I just needed to vent this out.

Thanks for listening.....

-Danielle

[Kasey]

Oh Danielle, what a blow!!!!! I could just cry for your family. You know how we all complain about waiting for results????? Well, I think this is a GOOD example of why we do ~~ so mistakes aren't made. IMO whoever that tech was should be GONE and fast. First of all, sharing such info is covered by those privacy rules.....you know the stuff we all sign in blood 100 times. And besides that.......sharing results does NOT fall under the realm of a tech's duties. That tech WAY overstepped.

I hope you all can pick up those shattered pieces of yourselves and get on the business of fighting lc. Hope you find out what was done about this and come and share it with all of us.

((((Danielle))),

Kasey

PS: And I'm not so sure when you say there is nothing you can. I would surely make LOTS of noise and attempt to do SOMETHING!

[Susan_Xu]

It happened to my dad's case too. He was told by a doctor in the CT office that the tumor is gone totally. We were so excited although a little bit doubt at the result. However the next day when we met the oncologist and was told the tumor is still there, but much small than before.

If time could go back, I would devote all my life and efforts on the cancer treatment.

Susan

[Nick C]

That sucks.

I try to remember that this is their job, and I know I've booted things at work...and nothing makes medical people any different. They are fallable. The problem is I make a mistake...potentially people lose $$$ medical people make mistakes...the consequences are worse.

But that doesn't change the fact that you should be upset...it truly sucks!

Sorry.

[trish2418]

I'm so sorry this happened to your family. There's really no excuse whatsoever. Take care.

Trish

[bware21]

Hey Danielle,

It makes you mad, doesn't it? And that's an understatement.

Had a similar thing happen to us when an assistant oncologist told us my PET scan was showing limited SCLC ... only to be told later (after we'd told the kids the good news) that he'd made a mistake. These are the kinds of mistakes that I find unforgiveable, but they *do* happen, and with more frequency than people realize.

Stay strong, and let it go when you're ready.

Bill

[TamHol]

Keep this experience in your hip pocket and be sure to check the name on the xrays the next time!!!! Or just flat out refuse the tech's information! Good God Almighty ......... what a stupid thing for the tech to do .... It's one thing to deliver news they are not qualified to pass on. But to completely the wrong person ............. I think I'd be looking for an appauligy! In person!

[needhope]

That's just plain inexcusable. I am mad for you.

Whoever the tech is should have to face some consequences. I can sympathize because I know how antsy and on-edge I feel around my dad's test time.

Rochelle

[wyogirl]

Danielle,

A similar thing happened with my dad. After chemo, surgery on mets in the liver, and surgery on primary tumor in the lung (at the time the dr thought he had 2 cancers - lung and liver), my dad was told instead of having stage IV lung cancer, they were going to reclassify it as stage I (i don't remember a or . My mom would be able to give you all these details. Anyway, they basically said he was NED. My dad told me that it felt like the weight of the world had been lifted off of his shoulders. So after one whole long, wonderful month, at his next appt, he was told that not only was he not NED, he had MORE mets in the liver, and he also ended up with more tumors in his lungs. Talk about devestating. He thought he had a chance to beat it, and came to find out that it was just as bad, if not worse, than it was before he had 2 major surgeries.

Oh Danielle, I so understand how angry you are. I used the same word as you to describe it......cruel. To offer someone hope just to have it taken away is beyond wrong. I truly do understand. I am still angry to this day, and my dad has been gone for almost a year now. I am so sorry you have to face yet another cruelty of this disease. It is so very hard to watch a beloved parent go through this. If you ever need to talk to someone, feel free to pm me.

Best wishes and prayers to you and your family.

p.s. sorry this wasn't a very uplifting post......

[Nushka]

I am sorry this happened to you. There is no excuse for this kind of thing and the tech should be warned.

Nina

[Bev'sSister]

My neice is a radiation tech..and we really rag her to tell us something when my sister's results come in, but she tells us she will lose her job if she does. The radiologist is the only one that can read the results accurately. I know it was awful for you to go through this, and I am sure the tech did not mean to upset you, but she should have never told you anything.

[ztweb]

Oh Danielle,

I am so, so sorry about this. You have every right to vent and be frustrated!

Jen

[Connie B]

ANY TECH is NOT suppose to give out information. That Tech may be fired, or should be. That's a BIG NO NO!!!

[marym]

That is just awful. Technicians are not to provide any medical information pertsining to the patients condition. I feel certain that individual would be fired at 99.9% of medical organizations.

Having said that, the way I was told I had lung cancer was when I went for a bronchosopy and the secretary looking over my form asked how long since I was diagnosed with LC? I told her I thought I was here today for a test to determine if I had LC. Then I proceeded to sob for hours...it was the first time the words were said to me and I was there alone as well.

While I think what happenned is terrible, I know the technicians, nurses, doctors, etc that I have encountered have been so great. I can forgive the one who messes up - I mean I know she didn't want to cause me grief.

Anyway, I hope things look up for your Mom.

Mary

[Danielle30]

Thanks everyone for all your replies and imput. I appreciate those who shared a similar experience and am sorry for what you went through. I am just stunned to find out this happens as often as it does, what a shame.

As for the tech who did this, my mom wont turn her in, she says the tech is a "nice girl just trying to help" and doesnt want her to get in trouble.

It's just another exapmle to me of the kind heart my mom has. Mom says she feels better and believes she is better despite of what any scan says. So we're just going to feed off her positive attitude and go forward hoping future scans WILL show improvement.

I've learned getting angry doesnt help my mom, nor does it make her better. So I just have to let it go...

Thanks for all of the support

-Danielle

[Flowergirlie]

I think your mom has the right attitude, even though it is so very difficult to think it is all better and then find out it isn't. We had a situation as well but it was the doctor just not telling us ALL OF THE INFORMATION, and I was equally upset to know that he knew my husband was extensive instead of limited and didn't tell us for over a month. I finally found out matter of factly from the nurse.

I think that ultimately everyone wants to be able to present good or positive news to someone with cancer and I am sure her intentions were not ill-willed. She should probably be gently told that she gave misinformation so that she will not do this again because as you know, it is devastating. Maybe you can stop this from happening to someone else.