Negative Biopsy, but Still Concerned....

Hello everyone,

This is my first post, but I have been reading all the posts on this site over the past month as I navigated my way through an elevated PSA and then a biopsy, which came back negative. First, let me thank you all for sharing your valuable insights and information on this forum. It was a big comfort to me during a time when I was very stressed and didn't feel comfortable talking with anyone else.

Now, back to the main reason for my post. As noted above, my biopsy came back negative, which should be cause for great relief, but it isn't. I continue to be concerned that they simply missed it. Am I crazy?

A little background: My father was diagnosed with PCa when he was 63. He had a full radical prostatectomy and he is still alive and well at age 85. My sister died of breast cancer when she was 45. So, I have a history of cancer and, specifically, PCa.

I am 54 and I had my annual physical in December. As part of my physical, I had my PSA test. It came back at 5.2, more than two times my score from last December (which was 2.3). I was referred to a urological oncologist, who ordered another PSA and a "free" PSA test. Interestingly, the PSA came back lower at 3.3, but the level of "free" PSA was less than 9%.

I plugged all this in to one of the predictor programs at the Sloan Kettering website, and it said I have more than a 75% chance of having PCa.

But, my biopsy was negative. I should be happy -- and I am -- but I can't help but feel like the biopsy simply missed the PCa. I understand there is a 40% false negative rate. I am concerned about simply waiting another year to see where things stand.

What do you guys think? Am I crazy?

Rich,
I would say no, that you are not crazy. Given the history of cancer in your family it would be normal to worry. Having said that, your father is still alive at 85 with PCa so that is great. I am sure your Dr. will continue to monitor your PSA and if needed have another biopsy. In the meantime please celebrate the fact no cancer was found and live life fully.
Michael

I know exactly how you feel and it is normal. I went through 10 years of increasing psa and 13 negative biopsies. If your psa continues to increase get either a color Doppler ultrasound or a 3 T
MRI to ease your concerns. No need to go through anxiety for years with today's technology.

Rich54 said...
Hello everyone,

This is my first post, but I have been reading all the posts on this site over the past month as I navigated my way through an elevated PSA and then a biopsy, which came back negative. First, let me thank you all for sharing your valuable insights and information on this forum. It was a big comfort to me during a time when I was very stressed and didn't feel comfortable talking with anyone else.

Now, back to the main reason for my post. As noted above, my biopsy came back negative, which should be cause for great relief, but it isn't. I continue to be concerned that they simply missed it. Am I crazy?

A little background: My father was diagnosed with PCa when he was 63. He had a full radical prostatectomy and he is still alive and well at age 85. My sister died of breast cancer when she was 45. So, I have a history of cancer and, specifically, PCa.

I am 54 and I had my annual physical in December. As part of my physical, I had my PSA test. It came back at 5.2, more than two times my score from last December (which was 2.3). I was referred to a urological oncologist, who ordered another PSA and a "free" PSA test. Interestingly, the PSA came back lower at 3.3, but the level of "free" PSA was less than 9%.

I plugged all this in to one of the predictor programs at the Sloan Kettering website, and it said I have more than a 75% chance of having PCa.

But, my biopsy was negative. I should be happy -- and I am -- but I can't help but feel like the biopsy simply missed the PCa. I understand there is a 40% false negative rate. I am concerned about simply waiting another year to see where things stand.

What do you guys think? Am I crazy?

Hi Rich,

As the others have said, you are NOT crazy to be concerned. You would be crazy if you were NOT concerned.

Yes, it is possible that the biopsy could have missed a tumor(s). There is a percentage (I think it's closer to 30 than 40%, but I could be wrong) of biopsies that are false negatives. A standard 12 core biopsy only samples around 1/1000 of the prostate.

As for Free PSA, red flags begin to rise when the percentage is down around 10%. It is not necessarly an indicator of PC, but it suggests that it is possible.

With your dad having PC, you are twice as likely than normal to get it. If any other direct relatives had PC, your chances go threefold, etc.

You should certainly keep a very frequent watch on your PSA. The difference in readings you described could be partly explained if they came from two different labs.

A saturation biopsy (up to 40 cores) might be a good idea for the future -- or some of the other tests that John T mentioned.

Good luck!!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Firm erections now briefly happening in early mornings, 2 years post-op.

The single digit Free PSA is worrisome, although the negative Biopsy is certainly encouraging. Do you have a copy of the Biopsy Pathology Report, what does it say about any findings of ASAP or High Grade PIN, if anything? I would suggest that you obtain a copy for your records, if you have not already done so.

I would suggest that you discuss the possibility of a PCA3 urine test which is substantially more Prostate Cancer (PCa) specific than is Total PSA and can be used to help evaluate the significance of the low Free PSA result.

This is considerably less invasive than a saturation Biopsy and cheaper and POSSIBLY more diagnostically defining than further imaging, AT THIS POINT, and a logical next step in evaluating the need for another Biopsy or additional diagnostic Imaging at your PSA level. in my informed layman's opinion. Good luck! - [email protected] (aka) az4peaks

Rich, Our stats are similar, early 50's, psa around 5, free psa around 10%. But what you learn over time is that two people with similar stats can have completely different cancers. One can be Low grade never needing treatment, the other can be very aggressive.  My first biopsy had one core positive out of 12, 2nd biopsy all 12 negative. But I know I still have PCa.  I am not rushing into treatment until I really know the amount and severity. A MRI guided biopsy has a much much greater chance of finding the cancer over the standard TRUS.  Since PCa is slow growing you have time to research and educate yourself as much as possible.  Reading other posts on this forum is a great start.  Best of luck and live each day to the fullest.