Thank you Nancy for your kind words and for sharing your thoughts and treatment experience. As with so many here it is encouraging to see you also had positive results. I hope you and your brother remain cancer free!
I also tend to think as you do re: having the TURBT for all tumors. After all, isn't the entire purpose to remove all cancerous tissue as well as have enough for staging/grading? I do plan to address this, and numrous other questions once I see my urologist next week.
So much yet to learn, discuss and heal. Thank you again for your reply..Very nice to meet you!
First let my extend my sympathy at the loss of your son. That has to be so difficult.
I also smoked and lived in a steel company town, during the years that the environment wasn't in our vocabulary.
Six years ago when I was dx'd, I was told smoking is the cause of bladder cancer, however after finding this sight, I can tell you there are a lot of people that never smoked. I quit 17 yrs. before my bladder cancer, but I am sure that was the result of smoking and environment. Doesn't really matter, we have to deal with what is on our plate right now.
Your BCG schedule does differ from mine. My doctor went by Dr Lamm's schedule. Once a week for six weeks, then after three months a cysto (to ck bladder) and BCG once a wk for three weeks. I did 24 BCG's and other people on this site did 30.
As for the genetic possibility, my brother was dx'd two years before me, but we both were previous smokers and had the same environment growing up. (he is 8 years out cancer free)
I am not a doctor, but having been on this site for 6 years, I would say you have to have a TURB to remove tumors, esp. to make sure all of the tumor has been removed and for the patient's comfort!
I have continued to come here many time to read posts and learn more about how bladder cancer affects so many of us. Although I have not always felt up to posting, your interactions here are so very helpful.
To refresh, I've had 2 TURBTS (Jan/2012 and May/2012) with DX of Low Grade tumors.
My first uro put off BCG due to other acute health issues (gall bladder disease/surgery) I finally got a second opinion last October and have felt more comfortable with my new urologist. He ordered a scope and there was recurrence of 3 small tumors which were removed during my
cystescopy. He first informed me the treatment would be with the chemo drug Tiotepa, but later decided to use BCG. I recently completed 4 Weeks of BCG with a maintenance plan of one treatment per month for one year. I noticed this was a lesser protocol than the Dr Lamm recommendation that many of you have mentioned.
Last Friday I had my 3 mo scope and again, recurrence of one small tumor which was removed during the procedure. I did not have the opportunity to speak with my Dr and plan to contact him today, but he informed my husband of his findings and mentioned that I should continue the monthly maintenance of BCG until next scope in March- adding that I many require a different drug treatment if the there is another recurrence. He also mentioned my high susceptibility could be related to genetic factors and toxins.
( I am a former smoker but have been COMPLETELY tobacco free for 5 mo...I also live in an industrial community)
SO, again, I find myself confused/frightened and would like to know if it's customary for these tumors to be removed without TURBT? Has anyone here had multiple recurrences and could these recurrences be related to my former use of tobacco?
I don't want to over react, but feel that there must be a more suitable approach, yet am not sure if this situation warrants a 3rd opinion.
I am doing all I can on my own nutritionally as well as avoidance of exposure to additional environmental toxins. Avoidance of stress is difficult as I continue to grieve the loss of my son.