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Update on white patches

11 years 10 months ago #20153 by Jules
Hi Rocky, thanks for your caring and I do now reaLize I have to care for myseLf so I can continue caring for my Mom and my pets and my animaL care business pets too. I just asked my doctor on my Last visit if I am considered Low grade and he said yes. I am now back on seeing the doctor every three months. It was great when I onLy had to go once a year but that is going to be a Longs ways off again.
Thanks again for your concern, JuLie

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11 years 10 months ago #20152 by Jules
Rosemary thanks for your repLy. Just to cLear up some of the things you wrote about. On my third tumor I did have a biopsy which was okay and on the three patches just done on JuLy 31st after the doctor did the cauterizing he said on my next appointment he wouLd do a biopsy again if anything showed up and then maybe start the bcg treatments. About not wanting to go to the hospitaL that was if he wanted to do a turbt. As after the tumor is cut out then it is cauterized and I have had pretty good resuLts with just the cauterizing onLy. Like in my Last posting around 10 years untiL the next tumor came back. I reaLLy appreciate your concern and wiLL do whatever it takes to keep me heaLthy so I can continue with my duties.
Take Care--JuLie

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11 years 10 months ago #20129 by Rockyiss
Hi Jules, I am glad you went so long without a reccur, but if I were you I wouldn,t mess around with this stuff. I also know what it is like to just want to think everything is fine because you are taking care of someone. I just went through chemo treatments with my husband for lymphoma and just didn,t even want to think of myself, but we have to. I am surprised that you don't have a stage or grade. I am ta grade two , five tumors in Feb 2007, one in Feb2008.
But maybe you know what stage and grade you are and just hav'nt mentioned it in your post. Please I am not lecturing just caring , hope all goes well with you. Rocky

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11 years 10 months ago - 11 years 10 months ago #20105 by Rosemary

I went back and re-read this whole thread. My eyes must be open this morning, because when I read the part again about your not wanting the biopsy and asking for the cauterization, I became a little uncomfortable. Not to scare you, but, I am hoping that you and your Doctor have not become complacent about your disease.

If you are the person responsible for taking care of an elderly person and all of those animals, then, you need to be very thorough in taking care of yourself.

Once again, one thing that I have learned from being here at the forum, and from people that I know locally with many and varied Bladder Cancer outcomes,
is don't play around!!

You can't make bladder cancer go away just because you don't have time for it.

I would advise you to go back to the clinic and ask for an NMP22 cytology test.

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 10 months ago #20099 by wsilberstein
For many years the doctor-patient relationship was paternalistic. Doctors gave instructions and patients followed the treatment advice. The current generation of patient doesn't want to be told what to do so much as to make informed decisions. The older generation of doctors has to get used to laying all their cards out on the table.
Low success rates make it difficult to endorse a treatment, but when it's the best treatment out there and the alternative is risking recurrence and progression... so the doctors have to get used to explaining all the risks, benefits, alternatives, and statistics, and some don't do a great job of full disclosure unless you ask questions.
But hiding something? What would be a physician's motivation to hide something? The medical profession's ultimate goal is to successfully treat patients. I can't see how hiding the truth from patients would accomplish that. And the suggestion that the medical community as a whole is hiding something smacks of some sinister conspiracy with an ulterior motive. I'm sure that's not really what you were thinking.
As for myself, I'm TaG3 plus CIS, 7¾ years cancer free without a recurrence. Was it my surgeon's skill, the Mitomycin C treatments, or just good luck? I don't know. And although I've had complications of the Mitomycin C (a urethral stricture) I would still opt for treatment if I had to make the choice over again.

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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11 years 10 months ago #20092 by Patricia
Nope i don't think thats what they're hiding...i think they're hiding the fact that in 35% of the cases tumors are pathologically understaged.
And i'm thinking thats probably a conservative number.
Second Opinion Second Opinion

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