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Is Surgery the Only Path

7 months 2 weeks ago #55148 by sara.anne
I would love to have a discussion of this paper with you.....but it would require several hours of discussion and much liquid libations!! We could start with the definitions of PUNLMP and non-invasive low grade...But without our discussion, it is interesting that out of their patient samples, only 53 were classified as PUNLMP while 625 were classified as non-invasive low grade. The odds are that it is cancer.

I do understand your reluctance to any surgery. My dear friend died as a result of cataract surgery (long story) which has made me, no matter how many other friends I know who have had successful cataract surgery, very afraid of it.
It is only natural.

You will do fine, you know.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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The following user(s) said Thank You: guitsolo

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7 months 2 weeks ago #55147 by guitsolo
Thank you for that very thoughtful and insightful response. Everything you said makes sense to me. I wasn't fearful of surgery until I lost my high school best friend last year. He had a routine colonoscopy that resulted in a blood clot that caused a stroke and death. There is a reason we have to sign off on all of those presurgery documents.

As far as where I read about my biopsy possibly not being classified as cancer, it was here:

http://www.jcancer.org/v08p2885.htm
PUNLMP was created as category of neither benign nor intrinsically malignant neoplasm in the 2004 WHO/ISUP classification system [8]. Accordingly, PUNLMP should not be regarded as cancer, which has psychosocial and financial significance. However, several previous studies showed that PUNLMPs could recur in a substantial proportion of patients [9, 14-18, 20-22]. Notably, some studies also represented that PUNLMPs had a low, but definitive risk of progression to a higher grade or stage lesions [14-16, 18]. Subsequently, the criticisms evolved that PUNLMP should be qualified as a carcinoma and that all PUC should be categorized as two groups (LG and HG) [4, 8]. In addition, several studies demonstrated that a low level of agreement in the histologic distinction, or no significant prognostic differences between PUNLMP and noninvasive LGPUC [14-16, 22].

Sounds very controversial!

I didn't have much doubt that I would do the surgical biopsy, but I'm trying to cover all my bases.

Thanks again,

HS

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7 months 2 weeks ago #55146 by sara.anne
Well, you do have a few questions here!!! Will try to answer ....please remember that we are not doctors, and are just giving you a layman's opinion, but from someone who has heard a lot about bladder cancer.

Your initial biopsy report indicates that as you noted the diagnosis from the sample presented was low grade papillary urothelial bladder cancer. Papillary means that it grows sort of like a mushroom up from the bladder lining. Urothelial cells line the bladder and this is the most common type of bladder cancer. The pathology does say that no muscle tissue was observed in the sample, which means that the pathologist was unable to tell if the tumor extended into the muscle or not. The cystitis cystica indicates that there were areas of irritation also present. The COMMENT section is pretty standard...the reading was double checked by another pathologist...routine procedure. All of this is probably what you already know.

As you probably also know one of the "dirty little secrets" of low grade bladder cancer is that it DOES tend to come back and it can come back as a high grade form. Any time a tumor is seen it does need to be removed and biopsied. For the urologist to suggest anything else would be gross malpractice. Why are you afraid of a TURB?
You have done that before...it is really minor surgery, done with twilight anesthesia and usually as an outpatient. I do understand that it is a bit more uncomfortable for males, but no big deal. And it is absolutely essential to be sure that the cancer has not progressed.

To get specific about your questions:
Is a PAPILLARY UROTHELIAL NEOPLASM, LOW GRADE, NONINVASIVE biopsy really cancer?
I don't know where you read that this is not really cancer. It IS really cancer and has the potential to become high grade as well as to spread (low grade means that is isn't spreading rapidly...not that it is not growing.) It is not now invasive but if left long enough it certainly can be.

Is the papillary lesion in my prostatic urethra likely to be the same biopsy as my bladder was?
Only a biopsy will tell.

Is the risk that the papillary lesion is going to be something harmful to me any higher than going under anesthesia for a surgical procedure?
Absolutely. And the anesthesia used for a TURB is NOT the type used for an appendectomy! It is just enough to put you under so that you do not feel the small cuts made for the biopsy.

Are there any blood, urine or semen test markers that are indicators of Urology cancer?
There are several urine tests for cancerous cells in the urine. The one most mentioned in the FISH test. However, these are useful only in conjunction with pathology and are not entirely accurate, sometimes giving false positive results.

In summary, you do need to have the TURB and also be scrupulous about keeping your 3 month appointments so that any recurrence can be handled immediately before it can become worse.

There are lots of us living full lives with this disease and you will too!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 months 2 weeks ago #55145 by guitsolo
So happy there is a support group to ask some questions.

During a routine physical in 2013, my PSA blood test of 4.8 triggered a notification to repeat the test 3 months later. My next PSA result was 4.7 and a Urologist contact me to recommend a prostate biopsy. The prostate biopsy resulted in a Gleason score of 3 + 4 and treatment was recommended. Being asymptomatic, I decided against treatment because I was more afraid of treatment than the prostate cancer. I have been getting regular PSA blood tests as shown below. I got a second prostate biopsy in November of 2016 and the result was a Gleason score of 3 + 3. However, during that prostate biopsy, my Urologist spotted something on my bladder.

A cystoscopy was recommended to take a better look at my bladder. My urologist said it looked like a bladder tumor and should be biopsied using a surgical TURBT procedure. The TURBT was done in November 2016. The pathology report shows:

FINAL PATHOLOGIC DIAGNOSIS
BLADDER TUMOR, TRANSURETHRAL RESECTION:
-PAPILLARY UROTHELIAL NEOPLASM, LOW GRADE, NONINVASIVE, PLEASE SEE
COMMENT.
-BACKGROUND PROLIFERATIVE CYSTITIS CYSTICA.
-MUSCULARIS PROPRIA NOT IDENTIFIED

The COMMENT just shows that another Dr. also reviewed my case and concurs with the biopsy.

Follow up cystoscopies have been done every 3-4 months. My bladder has looked good. However, during the December 2017 cystoscopy, my Urologist saw a papillary lesion in my prostatic urethra. He recommended a surgical biopsy that was scheduled for January 2018. He said that the lesions are common and usually nothing to worry about. But, in patients that have had bladder cancer, it should be biopsied. I had reservations about doing the surgery because I was more afraid of the surgery than the papillary lesion. Turned out that I was too sick the day of the surgery and it would not have happened anyway. I canceled the surgery and ask my Urologist to look again at my next scheduled cystoscopy which happened a few days ago. He saw the same lesion and has the same concern that it should be biopsied. I have the same reluctance to go through the surgery. I’ve asked if there are any other tests or non-invasive procedures that can be done, and the answer was no.

My wife and I have a telephone consultation with him in a few days and I’m still on the fence about whether I want to go through with the biopsy surgery. My follow up from the bladder tumor biopsy until now has been almost 18 months.

So, all of this is the outcome of a slightly elevated PSA blood test back in 2013! With no symptoms, I would have no idea about any problems with my bladder or prostate.

The questions that I have:

Is a PAPILLARY UROTHELIAL NEOPLASM, LOW GRADE, NONINVASIVE biopsy really cancer? Some of my research showed that this type of biopsy was added to grading to prevent using the term cancer that has so many negative implications financially and psychologically.

Is the papillary lesion in my prostatic urethra likely to be the same biopsy as my bladder was?

Is the risk that the papillary lesion is going to be something harmful to me any higher than going under anesthesia for a surgical procedure?

Are there any blood, urine or semen test markers that are indicators of Urology cancer?

Sincere Thanks in advance for any words of wisdom.

Harold Sexton

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