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Needing some advice

2 years 3 months ago #51900 by Auntmelli
Please please please find another doctor. I went to a doctors and was not comfortable with him. I was fortunate enough to know someone who gave me a recommendation of another urologist. I looked on line to get reviews by patients and went to him. I felt much more secure and comfortable with him. Do your homework you are your own advocate.

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2 years 11 months ago #50322 by Khristabella
I picked up my medical records today so I wanted to give a follow up. I was SHOCKED to find out I had two tumors removed during my surgery, my doctor only advised of one. Both were cancerous and in two different areas of my bladder.

I have also learned during the CT scan at the ER they had also found a mass in my upper right quadrant - no one advised me of this.

I'm blessed I found this site and for the advice you guys have provided me. I'm hoping I can get into the Mayo clinic soon for a second opinion. Thank you again!
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2 years 11 months ago - 2 years 11 months ago #50313 by jeffrx
Just for reference, my TURBT, in which a 3 cm tumor was removed, took a good 2 weeks for me to recover from. I don't think a couple of days is enough to get back to normal activity for most people (I guess it also depends on how much "scraping" was done).

The doctors never know exactly what they will take out until they go in with the cytoscope and then they can't tell you the results until they send it off to a lab. Still, your care seems pretty erratic. I agree with the others that you should go with the more experienced doctors.

Also, the fact that they told you to get a scan at 3 months is hopefully good news (but they should have explained exactly what's happening).

12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks
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2 years 11 months ago #50310 by Khristabella
Thank you very much for your response. I've already reached out to the Mayo Clinic to get an appointment. I really do appreciate the time you took to respond!

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2 years 11 months ago #50305 by wifeofmike
Khristabella,
I agree 100% with the 2 previous posts. Get your records and get yourself to a doctor & facility that specializes in BC. My husband was diagnosed November of 2015. His was aggressive & invasive cancer. He had his bladder removed 12-7-2015. His urologist diagnosed the cancer but from there we went to a cancer center with a doctor who specializes in bladder cancers.
As far as having a PCP. It's always good to have a doctor who can coordinate all your care; a doctor to see for sore throats, vaccines, etc. Depending on your type of health insurance, like if you have an HMO, you'll need to have a PCP.
But whatever you decide to do, please follow the advice you were given in the previous posts.
I checked out the posts in this forum when my husband was just diagnosed because we felt so alone and helpless. After his surgery, I finally posted something. I received so much support and positive feedback. I found a place for information.
I wish you well, Khristabella, please let me know how things are going for you.
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2 years 11 months ago #50302 by sara.anne
So sorry to hear your story. Ed is right....when these things occur in men they automatically think "bladder cancer." If it is a (young) woman, they have lots of other things they suspect.

Don't give up on the entire medical community....there are some wonderful docs out there. But you are absolutely right to pick up your files and find one with a little better patient care facility.

Your urologist should have discussed the entire situation with you. You should have a copy of the pathology report. It is SCARY to be told you have cancer!!

As Ed mentioned, the Mayo Clinic in Phoenix is a good place. In addition, one of the experts in bladder cancer, Dr. Donald Lamm, is now in private practice in Phoenix
http://www.bcgoncology.com/

I realize that it is a bit of a drive to Phoenix, but you do deserve the very best!!

Good luck to you

Sara Anne

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