Horses or Zebras? When cancer in the prostate isn't prostate cancer

[Deleted member 16042]

This is an uncommon circumstance, but I think it is worth posting.

I've been on a miserable journey. It was a 1 1/2 to 2 year PSA roller coaster peaking at 9.5. Free PSA was never alarming, always low risk no higher than 10%. Select MDX was negative. Accompanied by prostatitis and hyperplasia. Prostate volume 70cc/gm

I saw 2 uros who I didn't trust, and went through the usual uncertainty of diagnosis, what method to pursue for diagnosis, and worry about being cut off from TRT. Through the Inspire prostate forum I found my course of action: 3T MP MRI first, guided biopsy second. And I found Dr Karamanian in Houston who has been great through the whole process.

MRI showed three possible lesions. Dr K said they would be Pirads 4 by the book for most radiologists, but to him they looked somehow different, not obviously PCa. And the entire gland looked "different": like there was some kind of "biological activity" going on. He was right on the money.

I just received the pathology report. The guided 4 needle per lesion plus 12 needle "segmented", total 24 core biopsy shows CLL/SLL (Chronic/Small Lymphocytic Leukemia) in the prostate gland. The areas that showed as more suspicious in the MRI have higher concentration of the CLL cells. There are no prostate cancer cell mutations.... zero.

Thank God I have only one cancer, and not Prostate cancer per se.

I already knew I have stage 1 CLL, and previously found one reference to this kind of infiltration of the prostate with CLL. What this means is I probably need to initiate CLL treatment.

Off to the hematologist oncologist...

 

[DragonBits]

This is an uncommon circumstance, but I think it is worth posting.

I've been on a miserable journey. It was a 1 1/2 to 2 year PSA roller coaster peaking at 9.3. Free PSA was never alarming, always low risk no higher than 10%. Select MDX was negative. Accompanied by prostatitis and hyperplasia. Prostate volume 70cc

I saw 2 uros who I didn't trust, and went through the usual uncertainty of diagnosis, what method to pursue for diagnosis, and worry about being cut off from TRT. Through the Inspire prostate forum I found my course of action: 3T MP MRI first, guided biopsy second. And I found Dr Karamanian in Houston who has been great through the whole process.

MRI showed three possible lesions. Dr K said they would be Pirads 4 by the book for most radiologists, but to him they looked somehow different, not obviously PCa. And the entire gland looked "different": like there was some kind of "biological activity" going on. He was right on the money.

I just received the pathology report. The guided 4 needle per lesion plus 12 needle "segmented", total 24 core biopsy shows CLL/SLL (Chronic/Small Lymphocytic Leukemia) in the prostate gland. The areas that showed as more suspicious in the MRI have higher concentration of the CLL cells. There are no prostate cancer cell mutations.... zero.

Thank God I have only one cancer, and not Prostate cancer per se.

I already knew I have stage 1 CLL, and previously found one reference to this kind of infiltration of the prostate with CLL. What this means is I probably need to initiate CLL treatment.

Off to the hematologist oncologist...

i want to say congratulations on a correct diagnosis, but sad about the spread of this CLL.

No doubt you have heard of the roundup lawsuit that has been settled, which seems to be the same disease as you have. If so, you should check it out.

Roundup Cancer Settlement

Good luck, I continue to puzzle about my own fluctuating psa levels which recently peaked at 4.8 then came back down to 3.7.

 

[Deleted member 16042]

i want to say congratulations on a correct diagnosis, but sad about the spread of this CLL.

No doubt you have heard of the roundup lawsuit that has been settled, which seems to be the same disease as you have. If so, you should check it out.

Roundup Cancer Settlement

Good luck, I continue to puzzle about my own fluctuating psa levels which recently peaked at 4.8 then came back down to 3.7.

Thanks.

I've never had any specific exposure to glyphosate that I know of, but thanks!

A few people responded to my post on another forum. Apparently the chicken or the egg aspect can go the other way... prostate biopsy finds CLL, leads to previously unknown CLL diagnosis.