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Has Anyone Experienced This...??

5 years 3 months ago #45196 by josie
Thank you for your kind words and understanding. Still waiting for the results. Hope I hear something soon, but who knows??.... Have a blessed day.

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5 years 3 months ago #45195 by josie
Thanks for your response. I live in Las Vegas/Henderson NV.

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5 years 3 months ago #45193 by sara.anne
Josie, unfortunately, medical issues don't take the summer off!! I would have thought that your uro would have someone covering for her!!

If you let us know where you live, perhaps someone will have a suggestion as to a urology practice they could recommend. And, BEWARE, just because a place has "Cancer Center" in their name does not mean that they are a qualified place. There are some "for-profit" places that a. would not accept your insurance, thank goodness, and b. tend to put economics above patient care. You want to find a urologist who does specialize in bladder cancer, not prostate!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 3 months ago #45192 by Joey
Hi Josie, after I had my first surgery to remove the tumor I had 6 BCG treatments. My first follow up visit showed it had returned (or was there from the begining). I did not however have any visible signs of blood. That was just over 5 years ago and with additional BCG treatments I am now going every year for my cysto. After the cancer returned I was shocked and also scared, however so far in the long run it was just another hurdle to jump. I am doing very well now. That recurrence 5 years ago is now a distant memory.

Joey

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5 years 3 months ago #45186 by CatherineH
Hello Josie... Of course you don't sound harsh, and you are absolutely right. It is hard for someone who hasn't been where we have been to understand the fear and worry, as much as they may try to be empathetic. I know my own family and friends want to change the subject quickly if I ever mention that I fear my cancer could come back. Those who care about us have a hard time facing that as well and don't know how to channel it but just want to assure us that it's not going to happen. If only it were that easy...

We understand your concern here because many of us live with those same fears lurking around in our heads. I have found that I think about it less and less with time, but then my scheduled checkups bring back the nerves leading up to the appointments.

I do hope your test results from today come back quickly. Please let us know...

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 3 months ago #45185 by josie
Yes, she did do a culture 2X and put me on the same meds twice. When I questioned her the second time, she said the strain of bacteria I have responds best to that particular antibiotic (nitrofur-macr 100mg). Then how come it didn't work?? She responds, perhaps I needed to take it for a longer period of time. When that didn't work she referred me to my uro. Called urologist this morning and I just got back from having a urinalysis done at a local diagnostics center. Found out my dr. takes the summer off to be with her children hence, the Sept. cystoscopy appointment. I will be looking for a new doctor (ASAP). This will be my 3rd attempt at trying to find decent care. Unfortunately, with my Insurance I don't have too many choices. It does not cover any Cancer treatment centers, so will have to wait for next year to change my insurance coverage. (My job only allows a change of coverage once a year and I missed the cutoff). Hopefully, I will find a competent doctor in the meantime.

Because this is how my cancer started the first time (with recurrent infections that would not go away) it makes me very, very scared.

Thanks for responding. It feels good to get things off your chest with people who understand what you are feeling. My family is compassionate and worry about me, but I really don't think you understand something until you go through it yourself. I hope I don't sound harsh.

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