Mom just had TURB and I have questions

Thanks for your replies.  I am a little confused about re-TURB.  I wasn't with my mom when she went to the doc so I wasn't able to ask all of these questions although the nurse said I could call in with questions today.  I just want to get all my ducks in a row.

As for re-TURB.  Is that something that is done regardless of what they see during a scope?  The doc didn't mention re-TURB he just wants her to have 6 BCG treatments, wait six weeks, and then scope her to see if there is anything new.  Can anyone direct me to any articles on re-TURB.  I am a little disappointed that the doc didn't mention this as an option.  I was hoping he would lay out several treatment options and then recommend the best approach, but he really didn't do that and my mom is not one to ask many questions.  

I did have her ask about the possibility of residual tumor and he said definitivley that he is not concerned about that.  How can he be so sure with this type of cancer?  

Kim

Hi Kim:
I have TAG3 bladder cancer, was diagnosed last November, have had two TURBTS (6 tumors in all), Mitomycin after second TURBT followed by 6 weeks of BCG. As I am an Army wife, I have medical care at Walter Reed Army Hospital in D.C. - we live 100 miles (and a traffic filled Beltway) from the Hospital. When I received my BCG I was placed on a gurney (listened to my IPOD) for the two hours after the instillation. After elminating the first time was released. For the first three times I could have made it home which is due to traffic anywhere from 2 to 4 hours drive. But we did stay at a hotel each week (bleach, cranberry juice and water in tow) about 30 miles from Walter Reed. Let me tell you that weeks 4 - 6 this was a necessity for me but may not be for your Mom.

It makes sense to do whatever makes your Mom feel comfortable with her healthcare. I first started out at DeWitt Army Hospital (much closer to home) but was not comfortable with the doctor or my care. I have an Oncologist now at Walter Reed who studied at MD Anderson and the drive is worth it for me. I could have had the BCG instillations closer to home but decided to keep my medical care at one place, that worked for me. But in closing, I think you should give your Mom all the information you have collected from others going through the same thing as she and then let her make the decision.

Take care,
Sandra

Rosie,

It's T1 G3. My first pathology was Ta G1. My second pathology was T1 G3. My new doctor still thinks that I am Ta G1, but I'm not. He told me that I was, but he didn't read through all the notes. That's why it's good to keep up with your own stuff. Especially when you change doctors in the middle of the stream....

Your friend,
Rosemary

Kim. I had my BCG instillations at the place most experienced in the treatmentwent and where I feltlt the most confident. It was worth me going 2 1/2 hours away and staying in a hotel. There are sometimes problems with BCG installation with those that are not as experienced. Beleive me, it does make an difference on who is instilling that cathetar for the BCG instillation as far as comfort an pain. Also the institutions proper temperature storage of the BCG. I used maitake d fraction along with my BCG treatments afer reading the very credible research on it. I have recommended it to others with similiar results. I had little side effects from the 21 instillations I had. Don't panic with your mother having papillary bladder cancer as it is much more treatable and predictable han any other type. Rosemary, you were a T1 G3? You have stated before being a TA G2. That is quite a differnce in treatment and prognosis. Which is it? Rosie

Yes my report from Sloan had the grade and stage on the path report...i would call the doctors nurse and request it from her. I would also think they could recommend someone in NJ for your mom....don't they have a branch there? How far is the commute for you to Sloan? High grade papillary can go any direction...i'll let the superficial bladder people answer this one as to how she will feel after the treatments. Pat

Kim,

If the docs' are recommending BCG's then one could suppose that it is Stage T1. I would really try to get that in writing, though.

My cancer was predominately low grade with high grade focal areas. I was staged T1, G3. T2 would be muscle invasive but not all the way through the muscle.

BCG's are a very standard procedure in most Urology clinics. The nurses administer the treatment and it takes about 15 minutes, once you are prepped and the Dr has examined the Urine for any signs of infection. . Then after the 15 minute instillation, they boot you out and you go home to hold in the chemo for 2 hours. You have to dedicate a bathroom and use bleach after each void for the next 6 hours. I'm guessing that your Mom would be more comfortable doing this at home. I'm 54 years old, and I know that I would rather be at home to deal with these issues.

Anyway, I'm glad that this is behind her. I had T1, G3 tumors removed 14 months ago, with no recurrance as of yet. I have had 9 BCG's altogether. I am doing fine, so far.

If you have any questions, please feel free to ask. I would definitely try to pin the docs down on that Stage. It is important information.

Your friend,
Rosemary