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Hi i\'m new...and i\'m scared

9 years 10 months ago #23607 by Melodie
Brooke,

Bless your heart! I will add you to my prayer list. I was diagnosed with bladder cancer at age 56 two years ago. Later, my dear daughter, at age 21 was scared that she too might have it...I think and hope it was only sympathy pains. In an effort to help her feel better, I had her GYN do an ultra sound of that area and we everything appeared OK...she hasn't had any symtoms since then. I can hardly imagine someone so young as you are having to deal with such news but want to say, you are doing a terrific job of making inquiries and researching...and that is a hugh step in working this concern. Hugs, Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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9 years 11 months ago #23418 by GKLINE
I am coming to this party very late but I do have some experience in being proactive. I am quite amazed that professionals respond so poorly when a patient asks for information. I am sure that the litigious nature of the profession has cut us off from getting the information of bedside manor from our doctor. For this reason you must be willing to take the bull by the horns and ask for everything. If you get a gut feeling, follow it. I have had a great experience through all of this until I needed certain info for my AFLAC application. Suddenly, I couldn't get the reports. After repeated calls, I visited my doctor and he told me that I needed to know that the cancer was AGGRESSIVE and RARE. This was never even hinted at before. (but since I now had the reports in hand he knew I waould read this info)
Go for it! and don't take any pat answers. Just like this fight against cancer must be fought hard. So must the fight for information.
You have great support from people on this site, who have fought the hard fight against cancer. They will support you and gladly give advice that was hard learned. We are behind you every step.

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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9 years 11 months ago #22985 by Stephany
Rocky gives good advice! Breathe, and hug your family.

And get your tissue biopsies from the old uro, and take them somewhere else, where you will be respected as a knowledgeable consumer that you are.

Stephany in Iowa

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9 years 11 months ago #22981 by Rockyiss
Hi Brooke, Nothing like hearing the c word to get you heart beating fast, right. You will be fine, the fibromyalgia is different from the bc, I also have it and bc. I had a ct scan that said I had no tumors, three days later the uro went in and found five tumors , sooo go figure how great ct scans are. My brother had a tumor taken out four times 11 years ago ,no other treatment. He was in his early fortys. He wasn't scoped again until a couple of weeks ago and no tumors,no bladder cancer. See someone else , get the results (Copies) of all test and biopsies, get a copy of your records from the first uro.
Enjoy the holidays with your baby and remember to breathhhh !!!! Rocky

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10 years 4 days ago #22849 by Mel09
Hi Brooke,

I cannot even imagine what you are going through right now, but you have definitely come to the right place. There are a lot of very knowledgeable people here that can offer lots of wonderful advice. Say what's on your mind, no matter how scary or strange....we have all been there either as survivors or caregivers. You are not alone.

xoxo

Melissa

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10 years 5 days ago #22823 by dhqdizz
Sorry i mean just at Anderson...I was reading about the clinical trials, they have ones for early stage bladder cancer that people have already been treated for and the clinical trial is for prevention. But they aren't taking anyone anymore.

http://www.clinicaltrialssearch.org/fenretinide_to_prevent_cancer_recurrence_in_treating_patients_with_bladder_cancer.html

I've never had HPV...my husband is the only one that I've been with for the past 3 years.
I've only had one weird PAP and it was just a bacteria/yeast infection and that was right before i found out about the cancer.

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