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Sorry...very confused, scared, and not sure.

8 years 7 months ago #31514 by Just Dance
eddiek wrote:

Tricia,

Northwestern is in downtown Chicago. Please keep us posted.

Thank you.


Ed K.



Ed,

Okay...thank you. I will keep posting when I hear.

Thanks again.

~Tricia

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8 years 7 months ago #31482 by eddiek
Tricia,

Northwestern is in downtown Chicago. Please keep us posted.

Thank you.


Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver

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8 years 7 months ago #31466 by Just Dance
mmc wrote:

he knew they were NOT benign but couldn't tell if they were malignant. He also mentioned 'they can't decide what they want to be'. (?) Later, it was found that they were not malignant; that is what I know.


Huh?!?!?!?

He knew they were NOT benign but it was later determined they were NOT malignant? Sounds like NOT malignant to me but it also sounds like such a mess that it is very important to follow Pat's advice and get in touch with the other doc o get a second opinion.

If you were NOT malignant, I believe that means it was benign and that you do not have (nor ever had) bladder cancer. That's a good thing! However, you should have another doctor confirm this and then it will be happy days and no more confusion and fear.

Best of luck!
Mike



"Huh?!?!?!?" is right.

Yes...'not benign' and later 'not malignant'...but, let's not forget 'abnormal cells in the lesions after the cystoscopy'. So, cells that were ablated during that time were found to be abnormal, not benign, and not malignant. Confused as I am? Second opinion sounds good--it is just getting in to see someone who will take me.

Well, I asked my Uro directly, "If it is not benign and not malignant, what is it?" He said it is "gone" because he ablated them but we have to keep 'checking' with cystoscopies". :dry: I know what you are saying, Mike; it seems 'benign' would make sense and that is a GREAT thing--until he says 'not benign'.... (?) :S I haven't spoken with one person that says it made sense.... In order to confirm this I have to get in to see another doctor and, as you probably noticed, U of Chicago suggested I keep going to my Uro; although, I am going to see what I can do with Northwestern....

Thanks, Mike. Yep...it is a confusing mess. :S

~Tricia

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8 years 7 months ago #31465 by Just Dance
Patricia wrote:

Trisha ..just hit the link i put in there to a female uro/surgeon at Northwestern.
Don't go into great detail..just tell them you need a second opinion as microscopic blood was found in your urine. You can take your report with you but don't overload them initially.
And just ask if they take Medicaid.
As for Mikes letter you really think your uro would read it? I doubt it.
Pat



I will hit the link. Thank you!

I will not go into great detail when talking with Northwestern. Thank you for the support and advice. I also will check on the Medicaid.

No...I never intended to have my uro read Mike's letter; that never crossed my mind. I think that Mike was actually just 'relaying' the patient's feelings and our take on the situation.... I only meant that I can relate to his letter...not that I was going to use the letter except to encourage myself.

Thanks, Pat!

~Tricia

~Tricia

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8 years 7 months ago #31458 by mmc

he knew they were NOT benign but couldn't tell if they were malignant. He also mentioned 'they can't decide what they want to be'. (?) Later, it was found that they were not malignant; that is what I know.


Huh?!?!?!?

He knew they were NOT benign but it was later determined they were NOT malignant? Sounds like NOT malignant to me but it also sounds like such a mess that it is very important to follow Pat's advice and get in touch with the other doc o get a second opinion.

If you were NOT malignant, I believe that means it was benign and that you do not have (nor ever had) bladder cancer. That's a good thing! However, you should have another doctor confirm this and then it will be happy days and no more confusion and fear.

Best of luck!
Mike

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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8 years 7 months ago #31457 by mmc
My letter to the uro isn't so much really a letter for the uro as it is to get patients to think about what is important.

Bottom line is that your care is what is important and not the uro's feelings.

Hope that clears things up for people. :)

Mike

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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