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New Cancer Patients Retain Little Information

12 years 3 days ago #22003 by Patricia
sara.anne...i don't think you should feel weird about this. He has really ask you to be his advocate in a way and obviously trusts your instincts and your research ability. I think you just have to present it in a way that he gets all the pro's and con's and he's part of the decision process. How to present it objectively is a toughie i admit.
But i can tell you (even tho we have pharmacology in common) when i was first diagnosed i sure would have appreciated some help in my research as i was obviously to emotionally involved to even get through some of the papers. I did not initially have the ability to narrow down what applied to me and what didn't. The only think i knew for sure with the few brain cells operating was to get to the top doctors at the top centers for my condition.
I have a great capacity for denial!!!
I think its wonderful that you are doing this...we all need someone knowledgable to bounce off of..........Pat

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12 years 3 days ago #22001 by sara.anne
This topic raises a question which has some urgency for me. I have a good friend (male)who was diagnosed with CLL about 6 years ago. This is a type of leukemia that generally is mostly assymptomatic for years and the current thinking is that no treatment is done until/unless it becomes more active. My friend has been experiencing more and more symptoms over the past few months and has an appointment with a hemotologyst/oncologist next Friday. Has asked me to go with him since a. he is quite hard of hearing and b. I have a sort of medical background (pharmacology).

Here is where I need guidance. When I receive a diagnosis I read everything I can find (ie, bladder cancer) and am very active in my participation and treatment. He has read enough to understand his condition, somewhat, but is not the fanatic about it that I am. I KNOW that I know a lot more about his condition than he does. OK. How do I handle my role at his doc visit? I have asked him how he sees my role and it is primarily to listen and interpret for him. However, from my reading I am aware of some of the pros and cons of various treatments, etc.....Feel a little weird about this.


Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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12 years 4 days ago #21987 by wsilberstein
Although I have no research to back me up, I remember the day I heard I had cancer, and I'd venture to say that we don't even hear half of what the doctors tell us after we hear the word "CANCER."
It's been my experience as a pediatrician that whenever I tell a parent something upsetting, they will often ask me something I just finished explaining to them. Not only do they need reinforcement of the information, but even as they ask and I answer, I can tell that their minds are spinning with the next question and they're only half concentrating on my answer.
That's one of the reasons we need caring and supportive specialists who take the time to talk with us, not at us. The prima donnas who breeze in and out of the room before you can even think won't do.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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12 years 4 days ago - 12 years 4 days ago #21977 by Cynthia
We all know when we are first dxed that trying to understand it all and take it all in is almost impossible. Here is research proving it; moral of this story? Have someone with you to take notes and have a list of questions.

Reporting in the Nov. 20 issue of the Journal of Clinical Oncology, researchers from the Netherlands and Australia found that most people just diagnosed with cancer remembered less than half of what their doctor had told them.


Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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