Several of us on this site have had the same diagnosis : CIS with no muscle involvement and had had BCG/ 6 to start then maintenance follow up. So far we seem to be doing well. I am 6 1/2 yrs cancer free, Sara Anne and Joey are about the same time cancer free.
BCG is the first treatment of choice for CIS
I hope everyone is doing great. I want to update on my husband. Two weeks ago, we drove to MD Anderson and saw Dr. Kamat. Dr. Kamat performed another cysto. and patho confirmed CIS without muscle invasion. Since my husband's bladder capacity is only 40%, we are thinking to go back to MD to have radical cystectomy. But, when we saw our new urologist in town, he convinces my husband to try BCG first. He will have his first treatment in July,11. Now, we just pray that BCG will work It has been a lot of crying, confusion, stress....
Thanks alot for all supports, opinions and encouragements!
Sara Anne, can I pm you a question? and how do I do it?
5 years 3 months ago - 5 years 3 months ago#46359by Alan
As Warren said (and I am no doctor) aspirin should probably be discontinued as bleeding can be a by product. On the biopsy. I too had clots passed which in all probability is your situation after it. My URO warned me about this and it still surprised me. The MD Anderson site: http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/genitourinary/index.html
You can self refer yourself. The site has a lot of info. There are several hotels nearby with one, JC Rotary House right on campus. I have several aquaintances with BC that have seen Dr. Kamat or Grossman. I also have heard good things about Dr. Denney. Basically the whole department is highly rated. They are my backup should I need more extensive therapy. As it a long way from your area, you may still be able to pinpoint someone at the Kansas Med Hospital that Sarah Anne had linked.
As an aside I have linked a good site about different diversions in case that is in your future: http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
About a week or more after a TURB the clots that form at the site of the biopsies start to be shed. I always had a little bleeding, internal itching, and burning. A few years ago my cardiologist put me on aspirin 81 mg. I stopped for the biopsies but was told I could restart afterwards. Aspirin interferes with platelet function thus preventing clots which is why it is used to help prevent heart attacks. The FDA recently concluded that there wasn't sufficient evidence to recommend aspirin as a preventive. I'll have to talk to my cardiologist about that. In any event, while on the aspirin I developed severe post biopsy bleeding and clots which obstructed my bladder. I catheterized myself a few times until I could no longer get the catheter to pass and then took myself to the hospital where I was admitted for continuous bladder irrigation. I couldn't call bleeding "normal" but it does happen and until it is fully resolved your husband needs to discontinue the aspirin.
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...
Thanks Alan, Warren and Sara Anne for your inputs!
This morning (10 days after cystoscopy) my husband urinate with bright blood and passing couple of blood clots. It was very scary. He drank alot of water then 3 hours later the urine was clear. I wonder is it normal? By the way, he was taking baby ASA daily for the last 3-4 day.
We're thinking to drive to MD Anderson Cancer Center and seesking for second opinion, also my husband determine to have cystectomy and not messing around with BCG. So, do you know any Doctor at MD Anderson Cancer Center that does a good job with this type of surgery. Thank you!