Recur after 2 years \"all clear\"

15 years 8 months ago #19212 by Nix
Replied by Nix on topic Recur after 2 years \"all clear\"
They also told me it was not hereditary, but my brother had BC 4 yrs ago and had to have his bladder out immediately. He is doing great - a poster child for a Neo Bladder. Mine was dx'ed two years later. They say it is still not hereditary, we both had the same enviromental backgrounds - parents smoked - we smoked - however, I quit 18 yrs ago - steel town for 60 yrs. So far I have been able to hang on to my bladder, probably because I was aware of my brothers so I was very aggressive with everything from the get-go!

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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15 years 8 months ago #19198 by PeterK
Replied by PeterK on topic Recur after 2 years \"all clear\"
Sorry to hear about your recurrance. We all live with the possibility of recurrance. Your pathologogy report hopefully will give a better indication of what needs to be done. I had a CAT scan of my kidneys, liver, etc and a bone scan prior to my R/C. I don't know if these scans would be necessary, in your case, but they gave me peace of mind as they came up clean. However, you might want check with your urologist.

Good luck,

Peter

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15 years 8 months ago #19193 by timb
Replied by timb on topic Recur after 2 years \"all clear\"
Pemquid

you remind me of my days in papilloma purgatory! I had cystoscopies and recurrences for 14 years before my cystectomy and can really relate to the total letdown of thinking you're in the clear and then being back to square one. i think i had some 30 or 40 resections.like snakes and ladders. i also lost my dad to BC so i can relate to that. interestingly they told me that BC wasn't hereditary which i found hard to believe. your situation is a drag but by finding this site you've already shown that you have the mind to tip the odds in your own favour. all the best and here's hoping for an even bigger gap than the two years. it happens.

tim

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15 years 8 months ago #19192 by pemquid
Replied by pemquid on topic Recur after 2 years \"all clear\"
I'm back home already, feeling a little groggy. Procedure went well, just a bit of discomfort and cramping. Tumors were so small that the uro just took biopsy sample and then did fulguration of both. He also did fulguration on a blood vessel that seemed to be feeding one of the tumors, since he said these vessels can sometimes feed new tumors as well. Since there's been now 3 tumors (one orginal small one 2 years ago and now these 2 little ones, and all in different places) uro is recommending BCG, but says we'll wait and see what the pathology report says. I asked about any other testing that might be needed now that I've had the recurrence, and he mentioned possibly doing urine cytology and kidney evaluation (x-ray?), but again he wants to see what pathology report says. I did have cytology done at the time of the first tumor, but that was negative, as I understand it usually is for low grade tumors. Should I be asking about any other testing?

He mentioned a BCG protocol from the Southwest Oncology Group, which I need to look up. Anyone familiar with that, or using it? He also mentioned a figure of 30 treatments total, I think over 3 years (?) starting with 6 weeks in a row. As I'm still working full-time, I hope I can manage OK with those 6 weeks. But, I have plenty of sick time and my work is flexible, so I can work at home sometimes if I'm under the weather. :(

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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15 years 8 months ago #19184 by Cageygal
Replied by Cageygal on topic Recur after 2 years \"all clear\"
I know how disappointed you must be - but like you said, you ARE one of the 'lucky' ones!!! My husband was just recently diagnosed with T1, high grade BC, and we are just beginning the journey. It is encouraging to read the blogs and forums - there are so many of you with strength and courage!! My husband is handling it incredibly well, I'M the one who needs the support!!

I wish you the best, and hope that the office procedure is alot easier for you!

Please let us know the outcome.

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15 years 8 months ago #19183 by Betsy Mae
Replied by Betsy Mae on topic Recur after 2 years \"all clear\"
Good luck!

Betsy Mae

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