need advice

First of all, as Sara mentioned we are not medical professionals. I have been running a local bladder cancer support group for a few years and I have met bladder cancer patients in different stages. Also, I try to understand many aspects of bladder cancers and their treatment. But my knowledge is limited to only my experience, other patients' experience, seminars, textbooks, and mainly from reading research papers available in the internet and watching lots of youtube. I also know that the doctor knows the best. They just do not spend enough time to answer all the questions we all have. I think this forum is filling the void. Anyway, please read it just as some patient thinking and not as medical advice. Your doctor will be the one to advise.

Though tumors are small, there were four tumors. That will put into a category called intermediate risk. If it was only one tumor, then it is defined as low risk. Anyone with CIS, or HG, are high-risk non-muscle invasive (NMIBC). Low risk, intermediate-risk, and high risk indicate how risky it is to progress to muscle-invasive. It is not based upon so-called theory but rather it is based upon a very large study done a while ago and the result indicated that high-risk NMBIC patients showed a higher possibility of progression to the muscle layer. That is why BCG treatment is recommended as the first line treatment for high-risk NMBIC patients The treatment for high risk NMIBC patients are shown at the far right in the algorithm chart. You had multifocal (multiple tumors) at the initial diagnosis. Your treatment in the middle line of the treatment algorithm chart. I do not know whether you had intravesical chemotherapy (mitomycin) right after the initial TURBT or not. The treatment should have been BCG or Intravesical chemotherapy induction therapy + 1 year of maintenance therapy according to the algorithm.
Please note that this algorithm is a guideline for urologists. An individual urologist has his or her clinical data and experience, so the urologist will decide or will give the patient options for the treatment. I wonder if you and your original urologist had discussed the treatment options when after the urologist found that you had low grade but multiple tumors. The recurrence does not mean that cancer came back from the same spot. As I stated before, Intravesical chemotherapy immediately after your first TURBT could have reduced the number of recurrences. Anyway, that's the past and we cannot change it. So, what we need to focus on deciding what will be the best course of treatment to prevent future recurrences and especially avoiding progression. If cancer shows up on different places on the bladder surface, it may mean that they were there but it is possible that they were too small and could not be seen by cystoscopy. It may mean that there can be tumors in other parts of the bladder even today.

It is noted that your tumors are TaLG and they rarely progress to connective tissue and into the muscle layer as documented in many studies. So, it is very unlikely you will die from bladder cancer according to statistics. But,
as recurrences happened and especially they are happening earlier and the guidelines from the urological association (the algorithm chart was from Canadian Urological Association but both US and Canada have very similar guidelines) recommends BCG or Intravesical chemotherapy for intermediate-risk NMIBC, which is your situation, I think the recommendation by the current urologist seems to be reasonable.

It is noted that BCG and Intravesical chemotherapy have their own side effects. It is something you may wan to discuss with the urologist. Please note that BCG and Intravesical chemotherapy are administered into your bladder, so the side effects are usually limited to local to the bladder. Since the algorithm recommends only 1 year of maintenance compared to 3 years of maintenance for high-risk NMIBC patients, you have a better chance to complete BCG treatment than high-risk NMIBC patients statistically speaking.

BCG and Intravesical chemotherapy use a different mechanisms to kill bladder cancers, but it will cover the entire surface of the bladder, it should kill bladder cancers on the entire surface of the bladder even small cancers that your urologist could not see by cystoscopy, thus it should prevent a future recurrence. I do not have statistics what will be the probability of your having recurrence if you have BCG or Intravesical chemotherapy for similar to you case. This is something you may want to ask.

Best wishes

Hi Joe, 6 1/2 years ago I had 4 small tumors removed from my bladder, all somewhere around 0.7 x 0.4 x 0.2 cm.
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They were all non invasive and non cis which I think means flat tumor, which is good. The dr I had at the time did not do a bcg, and I trusted her and was so anxious at the time I just accepted that everything was going to be ok, just needed to follow up with cystoscopies.
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This dr left the medical staff, and I got a new dr, Then 2 1/2 years later it recurred, then 1 1/2 years, then 1 year, then 10 months, and then 6 months. All single and mm small. Now 3 months later the cystoscopy showed 2 small tumors which he removed and cauterized the area. They seem to be recurring more quickly and now this dr recommends doing a bcg. It looks like something I’m thinking I should do. Hopefully it will help, but perhaps it will come back afterward, but I’m thinking I should try to do everything I can. What do you think?

Have you had just one tumor in the beginning? How big was it? If it was < 3 cm and only one. That makes difference in determining how a urologist deals with your treatment. Listening to what you said, I believe your tumor was TaLG, which is good because it is very rare to progress beyond the basement membrane to the connective tissue. The attached chart is the algorithm which most urologists use to determine the treatment for non-muscle-invasive bladder cancer. If your first tumor was single and < 3 cm and TaLG, your treatment is the most left side of the chart. You had 1 recurrence in 1.25 year. It is not too bad. TaLG is known to have high recurrence rate. A case in point, below is the result of TaLG recurrence and the treatment by Memorial Sloan-Kettering Cancer Cener in New York. Please note that the study included TaLG > 3cm and mutiple TaLGs.
They did not use BCG or Intravesical chemotherapy. Just TURBT, Fuguration ( remove mm size in the office not in OR like TURBT) and cystoscopy. If you notice, one patient had 19 recurrence within 8 years. Still they did not use BCG or Intravesical chemotherapy.

The result of study
Of the 215 patients 143 (67%) had at least 1 recurrence (positive cystoscopy). With a median followup of 8 years tumor recurrences averaged 6.2 (range 1 to 19) requiring 0.34 transurethral resections per year or 1 transurethral resection every 3 years, or 0.61 fulgurations or 1 fulguration approximately every 2 years. There were 17 patients (8%) who had progression in grade or stage and 1 patient (0.5%) died of bladder cancer. Patients most likely to have recurrence had multiple tumors, low grade (TaLG) carcinoma or tumor at first followup cystoscopy.

Conclusions
Surveillance cystoscopy at 6-month intervals coupled with outpatient fulguration controls recurrent tumors and reduces the therapeutic burden for patients diagnosed with low grade papillary bladder tumors.

The link to the study www.sciencedirect.com/science/article/abs/pii/S002253470701419X#!


The cause of recurring NMIBC.

One theory is that when your urologist first removed the tumor, some cancer cells fell on to other places in the bladder. The other theory is field change or also called field cancerization, by that it means that the entire wall of bladder have been exposed carcinogen over many years so it has become easier for cancer to grow. I wonder if your urologist administered intravesical chemotherapy - usually mitomycin right after the first time the cancer was removed. It is known to reduce future recurrences by 8-10%.The intravesical chemotherapy is supposed kill the caner cells which were implanted from the surgery to remove the original cancer (TURBT). My urologist at a local clinic did not do it. If I had gone to a large cancer center, I might have got it.

i think i'm going to have it done. thank you so much for replying

I had a mm small cancer tumor removed from my bladder 6 years ago. The dr i had at the time told me i did not need BCG so I didn't question her. Since then (she is no longer my dr) I have had a recurrance 6 times, all mm small. I'm thinking I should have it done now, but at this point 6 years later I don't know what to do. Is anyone in a similar situation? So much anxiety at this point. Linda