What to do when lower grade recurrence happens?

2 months 2 weeks ago - 2 months 2 weeks ago #61210 by sara.anne
Replied by sara.anne on topic What to do when lower grade recurrence happens?
You and your family have really been on a roller coaster ride, but in the end it looks GOOD.  I would love to decorate your post with a lot of bright colored flags
that would say GET A SECOND OPINION!!!!
Any time something unusual shows up, such as with your father, we need to get a second opinion from someone with real experience in the field.  You truly did the right thing!  Congratulations!

I wouldn't worry too much about the BCG.  Your father had quite a few and got most of the benefit.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 months 2 weeks ago #61209 by Senter
So it's been a while but I've been meaning to update this, and I've finally found the time.

First off, during the TURBT, the urologist decided to open up a bladder diverticulum (that had somehow had its opening blocked), and inside it he found another suspicious growth.

The samples were sent for biopsy, the results were pretty bad. The tumor outside was grade 1, the tumor inside the diverticulum was grade 3, which made us panic, since from my understanding, cancers in the diverticulum can skip muscle invasion and go directly to the next stage, which is super scary.

Our original Uro wanted to continue with BCG and do another 6 round induction.

I insisted we also get a 2nd (and 3rd) opinion and at least entertain the idea of RC.

We eventually went to an uro surgeon, who also performs RC. He made my father do a battery of tests (in preparedness for a very probable RC), and also get the biopsy samples and have a different lab look at them.

The results from the different lab were... different. The G1 tumor was diagnosed to be something non-cancerous (the exact diagnosis escapes me right now, I think some type of Fibroma but I may be misremembering) and the grade 3 inside the diverticulum was diagnosed to be "nephrogenic adenoma", which is a rare benign growth and quite possibly caused by the BCG instillations.

We did another round of TURBT (performed by the new uro that we visited for the potential RC) and additional samples were taken, and the diagnosis remained the same "nephrogenic adenoma".

So we stopped the BCG instillations. Which is a bit worrying, but hopefully the 18 doses (or so) of BCG my father has already done will be sufficient.

Since then we did a bunch more cystoscopies and cytologies in a monthly rate. The cytologies were pretty good (results showed a few "atypical" cells) and cystoscopies showed some red areas, which in subsequent cystoscopies seemed to shrink which indicated they are not something to worry about, and the last one, 2 and a half months ago, was clean, at which point it was decided we go back to the normal 3-month cystoscopy schedule.

So all in all, so far, this has turned out pretty good so far for my father. The BCG instillations were pretty hard on him and he was starting to get persistent prostatitis and bladder infections (which apparently can also be a cause for nephrogenic adenoma), which sent us to the hospital a couple of times a year+ ago (which during the height of COVID was extra chaotic).

He seems much healthier now.

Ideally he would be able to continue the BCG instillations, but I'll take being unable to do more BCG doses over having a high grade recurrence and having to rush to do a RC.

We have another cytology / cystoscopy coming up in a couple of weeks. I'm hoping for good results.

I would like to thank everyone on this forum. I haven't really been posting much, but there were periods where I was under a lot of stress and reading other people's stories and experiences made the whole thing a little less overwhelming.
The following user(s) said Thank You: joea73

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11 months 4 weeks ago - 11 months 4 weeks ago #60759 by Alan
From my perspective your URO is asking and trying all the correct buttons. Papillary tumors are different than CIS which are always high grade. The usual protocol on low grade is watch and wait unless there is a recurrence. Thus, either way, BCG is the most prescribed agent and I believe statistically a slight preference over the chemo cocktails. Everyone still responds differently. For peace of mind as you have opined, a second opinion is probably a good idea. If for nothing else, "fresh eyes". That way you will have 2 minds working toward what agent may be best. Quite frankly, both should be good.

Adding that caregivers are very important! Give yourself a big pat on the back. Also, please post what happens as many will learn and gain knowledge with every post.

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.
The following user(s) said Thank You: Senter

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1 year 6 hours ago #60757 by Senter
2 and a half years ago my father was diagnosed with T1G3 + CIS in his bladder.

He had TURBT and 6 doses of BCG and then went on maintenance.

6 months ago they found a red lesion, did TURBT, but it was benign. (not sure if this is relevant)

Now in his last cystoscopy, his doctor saw a papillary tumor in a completely different spot.

The papillary tumor is not round. It's more like a line / streak, its dimensions seem to be approx 1cm x 1mm (and 1mm height), which to me seems like a weird shape.

My father also had a cytology which was completely negative (not even suspicious or atypical)

He is scheduled for TURBT / Biopsy in 2 days.

Now my questions:

1. Considering the tumor seems small, and cytology was negative, isn't this unlikely to be High Grade?

2. If this is Low Grade, what is the typical treatment response after TURBT?

The doctor, who also thinks this is likely low grade, talked about either restarting BCG regime, or changing the drug to MMC. And I'm a little perplexed.

In my mind BCG has successfully treated my father's original T1G3, and since that hasn't recurred I don't think BCG has failed, so changing drugs to something that is potentially less effective for the high grade tumor seems like a bad idea. It also doesn't feel like a big enough failure to me to warrant completely restarting the BCG treatment (I wouldn't mind this option, but I don't think my father may have trouble handling the side effects of another induction + more aggressive maintenance)

Does anyone have any information of what is usually done in similar situations? I've looked around but I haven't stumbled upon a similar situation as my father's.

We are going to consult other doctors after we have the biopsy results and we know what we're dealing with, but I just want to inform and prepare myself beforehand.

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