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Diagnosed myself

1 year 11 months ago #56165 by ripme
Just ignore me :-)

I thought I was posting to the Caribbean Cooking Channel

Have a good day
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1 year 11 months ago #56162 by sara.anne
Don't really understand your post. I DO understand that you are worried and upset.

First, if your kidney/ureter were removed, A BIOPSY WAS DONE. Every hospital that has a surgical dept. has a tumor board that reviews the results of ALL surgeries. Any hospital that doesn't would be shut down FAST. So you need to contact your operating team and obtain the biopsy/pathology report. It DOES exist.

If you are self-diagnosing using on-line stuff (even from our web site!) I am sure that your diagnosis is way off. If you are concerned you see a real doctor. Then you can deal with reality (even IF you have bladder cancer and IF you ar terminal.)

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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1 year 11 months ago #56161 by dtat60
I feel you, Ripme!

IMO trust of your doctors is an essential factor and we all are basically in the same situation. If you happen to live in a area close to a NCI recognized medical facility it makes the choices much easier and after all ease of treatment is a major factor in our medical decisions. I have chosen to use my local facilities versus traveling to a world recognized facility simply because of the logistical and financial impact. But always have that in mind as a option just in case.

In your case I would definitely consider a "center of excellence" and get another opinion before accepting a terminal diagnosis.

For me the good news is that most treatment protocols are developed and established in those major research treatment facilities through actual statistical results involving large numbers.

I have recently been diagnosed with non-Hodgkin lymphoma as I concurrently am fighting bladder cancer. It might or might not be a factor with my treatments going forward. The treatments I am taking for NHL do affect my bladder and not sure how yet. From my experience a lot is just simply unknown and the focus is on treating each disease in a very specific and segregated manner.

In a perfect world I would hope their would be a round table discussion involving different specialists to come up with a plan of action going forward. Maybe that is just a TV point of view but I do think that is more likely in a major facility.

Best of luck. So far I have been pleasantly surprised by my chemo treatments. Not as bad as I imagined. They have come a long way in treating and managing the side effects of cancer treatment. You might be surprised but will never know otherwise. I wish you the very best regardless.

Peace and Love

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
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1 year 11 months ago #56160 by Cynthia
Ripme, I am sorry you have to be here but welcome to our community. TV would have us believe that doctors are prepared for difficult conversations but in reality some just are not. Having said that it is always a good idea to seek a second opinion when one receives a serious diagnosis of any kind. There are what we call centers of excellence for bladder cancer all over the US please let us know what state you are in and we will give you suggestions. As far as life expectancy that would be impossible for us or really anyone who is not a doctor and familiar with your exact situation. This would be another reason to seek a second opinion. As far as not having further treatment that is always a very personal decision, but you owe it to yourself to know what all of your options are.

Keep us updated.

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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