I appreciate all the responses. I've learned a lot from them. I would like him to get a second opinion. He meets with the doctor next week to see the pathology report. He was going to a local hospital to get the BCG rather than driving the distance back to the specialist. So the story I tell myself is somone might have mixed something wrong. That might not be the case, maybe the cancer has come back full force. When I get the facts I'll report back. I again appreciate the responses, it's hard to ask the doctor the right questions when you are not informed or have an good understanding of the cancer and treatment. You hear so often the cure is worse than disease. The BCG hasn't been easy for him.
I am as relative newcomer, and have just started BCG myself, but something doesn't sound quite right. The usual protocol for BCG is 6 weekly instillations, followed up by 3 weeks maintenance, usually at reduced dose (at 3 month, 6 month, then every 6 months out to 3 years, or more) This is the protocol developed by Dr. Lamm, and sometimes also called the SW Oncology Group (SWOG) protocol. As others have said here, this BCG protocol is generally used for higher grade tumors, or in cases where there has been recurrence of low grade tumors; it's also used for CIS (carcinoma in situ).
It doesn't quite sound right that your Dad would have a single BCG instillation, followed by 6 more. The latest thinking on low grade initial papillary tumors is a single dose of a chemotherapeutic agent such as mitomycin after the tumor is removed, but not BCG. (Although I will say my own urologist did not do this when I had my first tumor 2 years ago, and has now started me on BCG for a recurrence -- 2 small tumors, low grade and non-invasive.) Is it possible your Dad has CIS? BCG might be used for that right away. I don't know much about CIS, but I believe it can look like a flat red inflamed area ("burned"). Another thought about the "burning" of his bladder could be an incorrectly mixed BCG (or other chemo) solution, where he got way too high a concentration. However, I believe some people can have a very strong reaction to even a normal dose of BCG, and if that's the case, the same therapeutic effect can be achieved by reducing the concentration way down (to even as low as 10%), but they won't (shouldn't) do any instillations so long as there is any infection of major irritation.
It definitely sounds as though you need more information, and certainly a second opinion. Best wishes to your Dad and your family.
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.
I would certainly agree with the others to get a second opinion as to what might be wrong. There is nothing, to my knowledge, in a BCG instillation that could cause "burning". It could,perhaps, cause an irritation, but not severe enough to warrant a bladder removal. Is your Dad's URO experienced enough in BC treatment to make such a drastic decision? Again, get a second opinion!
Good luck, Tommy
first of all BCG is used only in high grade tumors so something is not quite right about the pathology of this. Do you have his path report...has he had a TURB in a hospital setting? refer to this page
You definately need a second opinion very quickly. If you tell us where you are located we can recommend someone in your vicinity that is very experienced with bladder cancer.
11 years 2 weeks ago - 11 years 2 weeks ago#20272by Rosemary
I highly recommend that you get a copy of all pathology reports. Based on what you are telling us, I am thinking that a "Grade 0" Bladder cancer would not require BCG treatments. So, either I'm confused, or you're not clear on some of the facts.
Also, I have never heard of BCG "burning" a bladder. I can tell you that it DOES burn during treatment, but this is a subjective experience and usually clears up within the day. I've never heard of what you are describing.
Is there any way to get a copy of the pathology reports???
Oh, and get a second opinion!!
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
11 years 2 weeks ago - 11 years 2 weeks ago#20267by Gene Beane
I would get him to another Surgeon for a SECOND OPINION.
Everyone here can tell you of many specialists all over the U.S. He really needs to have first rate second opinion. My husband went to the Cleveland Clinic, this is the type facility you need.
Others who have had bcg will chime in I am sure, I have never heard of it burning the bladder, there are many here who have had this treatment, over and over... I wish you well on your fathers fight to get well once again.
Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet