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Dr communication is not gaurenteed

11 years 5 months ago #26397 by mmc
Just so people know. You don't have to wait for your doctor to get the test results.

Every time I have had to go for a scan or xray, I leave with a CD of it in my hand. When lab work is done, I have it faxed to me in addition to going to the doctor. I don't need a doctor to read me a report. I need the doctor to tell me what this or that may mean in terms of my health and my options.

Most of the time, the report will describe things in detail and that way the conversation becomes one of the doctor explaining what those details mean.

That is such a terrible story Holly. Sorry to think how often something like that happens.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 5 months ago #26395 by Patricia
Bad test reports often go unreported.......gee..really?

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11 years 6 months ago #25564 by mznoregrets

It is difficult enough to know our lives are forever changed by a bladder cancer dx, let alone have to suddenly know how to get quality medical care to survive it. Personally I have learned a few things from bad experiences and I try to be wiser. Many here have shared their "learning" experiences which have also helped me to see the writing on the wall at times. I am grateful for the lessons and my hope is that we can readily recognize and avoid similar pitfalls in our care. Be assertive and and trust your gut feelings in being your own advocate - it will serve you well.
God Bless, Holly

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11 years 6 months ago #25556 by alsimons
I can tell you horror stories about my involvement with doctors since learning I had BC. Look around there are good doctors out there. Don't settle for second best.


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11 years 6 months ago #25553 by Rockyiss
Hi Holly, The first uro I saw told me I had a polyp and he needed to take it out. He never told me that there was a very good chance that it was cancer. when he did the turb he took out five tumors stage ta grade two. He told me I had cancer when I was in the process of waking up. He also gave me mytominicin whith out my consent or knowledge.
When I ask him why, when he first scoped me he didn,t tell me that I more than likely had bladder cancer, he said people tend to get upset to hear they might have cancer and if the turb is neg. they get upset that he worried them. I said "as opposed to how upset I am upon waking up from the turb and hearing that I do !"
I told him he took away my choices, I would have gone straight to John Hopkins if I even thought I had cancer !! He said that he took out five tumors and some of the wall to make sure that he got it all. The path report said he didn't get any of the wall of the bladder. I also told him someday he is going to have a lawsuit on his hands if he keeps giving out chemo without a patients knowledge. Long story short I went straight to John Hopkins and now see Dr. Schoengberg.
What a shame this family lost that time with their Mom. The Drs. didn't tell my brother or his wife that time was short for them also. Rocky

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11 years 6 months ago #25549 by lisaloo
Hi Holly
I cannot believe what this lady and her family have been through its barely human.I know sometimes our doctors think they know best.Aarghhh why do I always try and give people a get out ?This is truely awful why did they put this poor lady through such dreadful surgery when they knew the prognosis.
I feel so much respect for my doctors and their honesty and feel so sorry this has happened and feel sad that you recommended people to the family you trusted and respected and they let you down.
Take care and send the ladies family my love and best wishes too
Lisa xxx

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