Thanks a lot for your suggestions, Jack, including your go-to web sites. It'll take me a little while to assimilate the new data with other info I've compiled, but in the mean time I really appreciate your help!
The biopsy material can be sent to another pathologist (ideally a large, cancer specific institution) for a second opinion. It is the pathologist, not the treating doctor who determines the grade and stage. A second biopsy read MAY help sort things out. Your insurance may be able to help coordinate a second biopsy review - but demand a bladder cancer specialist enter do the second reading.
As I read your comments, there is no muscle layer in the biopsy. Without finding disease-free muscle (or wide, clear margins) under a tumor, muscle invasive cannot be ruled out. Do note that micro invasion is possible even with a clean muscle sample. You mention "nests" in the biopsy report - there are a variety of nesting presentations, and the type of nesting can be important in determining treatment.
Since you are clearly a web researcher, I suggest two sites be reviewed. The first is my go-to first source for information that relates to ME. You will need to compare your situation with the presentations. Caution - only a treating doctor can (or should) be able to explain your situation, the objective findings AND the options available along with the risks and benefits of each.
The second article is based on much of the same information as the first, but is a good check on the conclusions that can be reached by a different group of researchers.
A second opinion as a necessity when there is any doubt or confusion. If questions are not answered is a straight forward manner, it is time to find a new treater; this is especially true if the current treater is a general practice urologist with the typical limited treatment options.
Expert consensus document: Consensus statement on best practice management regarding the use of intravesical immunotherapy with BCG for bladder cancer
It can be a scary time for your husband. He may feel safe with his current doctor and wish to avoid changing doctors. It can be a rough time; the two of you need to be a team battling the disease that is affecting both of you.
What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back...
Unfortunately, so far my husband won’t discuss my findings (and he has done no research), now will he hear of a second opinion. When he had his last visit with his internist, I asked his doc, “just in case” how hard it would it be to get a referral for 2nd opinion, how long it would take. He replied not long at all and asked if we lacked confidence in my husband’s doctor. I said my husband doesn’t, but I do.
The urologist’s approach doesn’t seem sound to me, the more I read.
1. I read that you should resect the tumor by following the curvature of the bladder so you don’t perforate the bladder wall. But the urologist’s op report says he “elected not to instill mitomycin because of the several perforations where fat was visible.” Mitomycin was finally administered the next day, but I believe it was outside the optimal 24 hour window.
2. The urologist’s treatment approach was to start induction BCG 3 weeks after the TURBT. I asked him if he was not going to do the 2nd TURBT at 4 to 6 weeks. He said no. He asked if I really wanted delay my husband’s treatment or to subject my husband to a second resection after such an extensive one. I didn’t know what to say. I know that a 2nd TURBT allows a tumor to be upstaged if warranted (so you can get the appropriate treatment) and that the 2nd TURBT also is more successful in detecting CIS tumors. I didn’t know then that, for BCG to be effective, the tumor burden should be small. Is there a possibility that, without the 2nd TURBT, my husband’s tumor burden could be too large?
3. Also, as I understood the urologist, he’s also contemplating immediately proceeding with a second induction course after the first one (without an intervening TURBT or cystogram) - because the result wouldn’t impact his coice of treatment. “BCG is the gold standard in these cases.” He asked what I would have him do, what treatment is better. At the time I said the only think I knew, “cystectomy” whereupon he and my husband firmly asserted that they are sticking to a bladder sparing approach. Since then I’ve read that, for patients refusing cystectomy, there are other treatments that have outcomes close to those of a radical cystectomy: a) trimodal therapy (TURBT followed by concurrent chemotherapy and radiation) or b) mitomycin delivered in conjunction with hypethermy of the bladder or c) sequential BCG and electromotive mitomycin. I’m afraid that if my husband is unresponsive to the BCG (because of his age or the tumor burden or his DNA or. . .) we will have wasted so much time. I asked the doctor what if there were to be a BCG failure. His only answer is that we’d see when the time comes
4. My husband refuses to talk to me about this. My only hope, so far, is that he may read our dialogues and reconsider the risk he is taking.
Thank you again for helping me!
P.S. To answser sara.anne’s question about going beyond the bladder lining - Per the path report, there is superficial invasion of the lamina propria layer by irregulary shaped nests of tumor cells noted in conjunction with the absence of a microscopically demonstrable intact basemen membrane layer.” But the good news: “There is no definitive microscopic evidence for a myoinvasive tumor component.” So it is T1G2? or T1G3? His urologists insists his risk is intermediate rather than high. This too I don’t understand, given his age and other factors mentioned above.
P.P.S. The op report also noted “there is extensive tumor.”
2 years 5 months ago - 2 years 5 months ago#54211by Alan
I had the same question of my URO. He indicated the past several years that it is either low or high, nothing n between. Also, even if only a small part is high grade it is considered all high grade. You want to attack this cancer! It is treatable and beatable. For a second opinion be sure you have a group or center that does mostly bladder cancer. Too many see mostly prostate cancer which is a different animal.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
You are in a really difficult position if your husband is not willing to go further with this. ANYTHING BEYOND LOW GRADE deserves immediate attention. Has his urologist proposed a treatment plan? If the tumor has gone beyond the bladder lining (ie, T1) a second opinion is certainly indicated. His current doctor's plans may be exactly what is necessary, but in such situations it is important that the right thing be done ASAP.
If you let us know where you are located, some of our members may have some good suggestions for you as to where you might seek a second opinion.
Best of luck to you and your husband
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
My husband us adamant about not wanting to get a second opinion. However, I am not confident in his doctor and am trying to understand my husband’s condition and the best practices as best I can. My first (of lots) questions is how to interpret the pathology report. It says ”Papillary transitional cell carcinoma (CC). Grade 2-3 of 3. Analogous to a high grade urothelial neoplasm per the revised 2003 WHO/ISUP Grading Criteria.”
My understanding is that there is a significant difference in treatment of intermediate risk (T1G2) and high risk (T1G3). Is this correct? Further, his doctor insists he is only intermediate risk despite his being elderly and the cancer’s being multifocal, nested and, per the op report, “extensive”
What does “Grade 2-3 of 3” mean? Am I right to worry?