Re-Occuring BC

Hi,
Rosie is referring to the latest news, which has the US adapting European guidelines for non-invasive bladder cancer, namely an instillation of chemo post-TUR, re-TUR for high grade tumors and BCG for high grade tumors using maintenance therapy for CIS.
www.medicalnewstoday.com/medicalnews.php?newsid=74465 Report On Proposed Guidelines On Bladder Cancer For Non Muscle Invasive Disease

WebCafe's page on superficial blc has more info:
blcwebcafe.org/superficialblca.asp and about intravesical chemotherapy:
blcwebcafe.org/intravesicalchemo.asp

The BCG info is here: blcwebcafe.org/bcg.asp

There is a lot to learn and the territory is fraught with complications. But please don't despair as this can be a very survivable diagnosis, especially low grade tumors. Recurrence is a big problem...the instillations give short term benefit (up to 2 yrs delay at best), but many find this worth it.

All the best to you,
Wendy

Linda, I highly recommend you ask your urologist about chemical treatment just after TURB by Mitomycin or" Was it done? If not, why not try it before the BCG routine? You can even give him some of the comments and stats from this sight. I have no confidence in BCG keeping low grade papillary from recurring based on my experience of 21 BCG treamtnes and the long term tests sighted on bladder cancer web cafe. Rosie Ambs

Linda,

Hey. ROSEMARY here. I know it's confusing. ;D

You should be fine to go to work the day after your BCG. The only reason I even took my BCG day off from work, was because you have to bleach the toilet for 6 hours with each void.

Take care and let us know if we can answer questions, or help further.

Your BC friend,
Rosemary

Mystic Linda, I finally noticed your name is Linda but your screen name Mystic. If you have read this board you will see that the newest treatment has to do with 1 instillation of some chemical preventative just after TURB. Most in the United States that received a chemical preventative immediately after TURB is Mitomycin. Wendy said many in Europe instill another chemical Epicurem or something like that. I have had 4 recurrences of papillary low grade blc but would have probably had a lot more surgeries if I had not done watchful waiting when a new papillary growth appeared. It seems these low grade papillaries are not very threatening to become aggressive nor invade but do recur often, so I let mine slow grow before removal. If you are within the first two years of this bladder cancer journey, you are still learning the growth pattern of you papillaries. If I understand your posts correctly, you have had some recurrences but also some new growths that were removed. Just pay attention to the type and the grade and you will then get a more predictable history. For instance, I had a TURB done after a couple of spots were seen during a cystoscopy. After the TURB, I got a copy of the operating room and the physician report. The physician report stated that one spot disintegrated when it was touched by the instrument/ The other spot was too small for a sample to send to pathology. So I went through a surgery that told me nothing except possibly to not act so quickly for treatment. Does your pathology report tell of each growth removed and it's grade? Do you have all written reports so you can put together the pieces of the puzzle for your particular blc history? I recommend all do. Rosie Ambs

Mystic, you are getting replies from two different woman with a name. I am Rosie Ambs who asked about your type and grade of bladder cancer, sugeries and pathology. Both Rosemary and I have had BCG treatments but have had different experiences as to the side effects. I had very minor urgency and a bit of burning if I didn't drink enough water after BCG treatments. Unfortunately, Rosemary has had , terrible and long lasting side effects but stated in her last post to you and all "I think I was his first patient in 8 years to have any sort of aberation in side effects. I doubt you'll have any thing to worry about with side effects."

This Rosie, however, still wonders if you had one instillation of mitomycin immeidately after TURB to prevent recurreces before having to go the BCG route with a low grade papillary. Rosie Ambs

Linda,

I agree with the treatment protocol. My protocol for treatment, however, was to hold the BCG for 2 hours. I wonder why the difference.....?

If you have any questions or problems about BCG's please feel free to ask. My Doctor tells me that the norm is to have a little cystitis and basically no problems. I think I was his first patient in 8 years to have any sort of aberation in side effects. I doubt you'll have any thing to worry about with side effects.

Please let us know how you do, and if you have any questions.

Your BC friend,
Rosemary