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3 month check; "at least" 3 tumors.

1 year 2 months ago #54147 by VinceD
Hi Nancy,

Your case sounds very similar to mine. 46 years old, non-smoker. I was diagnosed with CIS back in April and after my TURBT and 6 weeks of BCG, they found what they thought were 3-5 tumors during the cystoscopy check up. I was back in for the second TURBT shortly thereafter. They did find CIS on the back wall of the bladder, but two other spots they checked were only inflammation.

I am now 4 weeks into my BCG/Interferon treatments. On a positive note, I haven't suffered any additional side effects vs. my first BCG treatments. I will finish my second round on October 20th. I have my treatment on Friday mornings so I can work through the week. Friday - Saturday I am out of commission. By Sunday, I can usually make it through most of the day without having to constantly visit the bathroom.

Time will tell how this will work out. I am cautiously optimistic that this is working as I am feeling pretty good here on a Wednesday morning, 5 days since my last treatment. I wish you all the best in your treatments and recovery and I will keep you in my thoughts.

Vince

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1 year 2 months ago #54144 by JoeSmo55
Hi Nancy. I am going in for my 1st post BCG exam the first of December, so read your message as it hits close to home. Had the first surgery for my T1HG tumor (3.5cm) mid June. Then before BCG, a different surgeon went in and took out more small stuff (midAugust) Did you only have the one TURBT before the start of BCG. If so, it is not uncommon to have more cancer removed with the second one - the reason is that in my case, because the tumor was large - they spent all their time on that - and things get missed. If they didn't get it all the first time, then the BCG isn't very effective. I was confident that before I started my BCG, it was all removed. But I am nervous about December. If December turns up more - then I move to the next step - remaining optimistic.

Hang in there, and keep us posted.

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1 year 2 months ago #54136 by Alan
Nancy,

Interfuron has worked for several posters. Keeping the fingers crossed for you!

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.

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1 year 2 months ago #54121 by dtat60
I also had a "bluelight" cystoscopy for my followup TURBT and am thankful. My first TURBT they found papillary tumor 5% HG and on the bluelight they found CIS that was missed on the initial surgery. The hospital was just getting the equipment to do this type of surgery and the product people were there when I did my surgery. I used the Cysview product prior to surgery and the product folks were also in the OR during surgery. Afterwards my Doctor said that he was glad we did because he had missed the CIS first time and it was on the "dome" and had to have someone push down on my stomach in order to get at the spot to cut away. They also got some photos post surgery and the Cysview highlight my CIS just like you see on the web. I feel like without that it have been missed again. He must have gotten it "good" because this time I had a catheter (none first time) and a lot of bleeding and tissue for the next 2-3 days. Good luck with your surgery you will be fine.

Peace and Love,
Dave

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 2 months ago #54118 by Nancycccslp
63 read, no responses.
Thanks for all the support!

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1 year 2 months ago #54108 by Nancycccslp
I had TURBT for TaHG 3 months ago. Did the usual 6 BCG treatments. Yesterday was my first cystoscopy; he stopped when he saw 3 tumors because "we already know you need surgery." I'm scheduled for Oct. 10th.
This is a new doc, I "upped it" when my previous practice said they don't do maintenance. This new practice is the only practice on Long Island to have access to the blue light cystoscopy; he will absolutely be doing that during this surgery to get all possible malignancies out.
I'm only 51, female, I don't smoke or drink. I'm devastated. An immediate recurrence is a bad prognostic indicator, I think.
I am going to push for BCG plus Interferon. This doc is very aggressive so I think we are on the same page.
Keep me in your thoughts.

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