NEWLY DIAGNOSED PC

Papun,

Slow down, take a breath. Did your Doctor give you a copy of the Pathology report?
If so, on the report it will list each core that was taken and what was found in that core.
All prostate cancer is a "carcinoma", the individual core pathology will state what type of carcinoma was found in the core. This will most typically say it is "adenocarcinoma" and will give a numeric Gleason score comprised of two numbers.

If you were to look at my Pathology report it says each positive core was adenocarcinoma, but on the right side of the report in big bold letters underneath Diagnosis it simply says "CARCINOMA".

You may be getting confused on what is being said and what you are hearing.

If your PSA level was only .5 I don't know why your Dr. would have done a biopsy, unless there was something else going on. You may have misheard and your PSA was actually 5 or 9, which would justify a biopsy.

If you have not gotten a physical copy of the Pathology report I recommend you do so and read the actual result so you know what the results are.

Second thing to do is to get a second opinion from Dr. Epstein at John Hopkins.

.

Undecidedtx said...
Papun,

Slow down, take a breath. Did your Doctor give you a copy of the Pathology report?
If so, on the report it will list each core that was taken and what was found in that core.
All prostate cancer is a "carcinoma", the individual core pathology will state what type of carcinoma was found in the core. This will most typically say it is "adenocarcinoma" and will give a numeric Gleason score comprised of two numbers.

If you were to look at my Pathology report it says each positive core was adenocarcinoma, but on the right side of the report in big bold letters underneath Diagnosis it simply says "CARCINOMA".

You may be getting confused on what is being said and what you are hearing.

If your PSA level was only .5 I don't know why your Dr. would have done a biopsy, unless there was something else going on. You may have misheard and your PSA was actually 5 or 9, which would justify a biopsy.

If you have not gotten a physical copy of the Pathology report I recommend you do so and read the actual result so you know what the results are.

Second thing to do is to get a second opinion from Dr. Epstein at John Hopkins.

Undecidedtx,

I do have the pathology report in front of me. I'm trying to download it to the page but don't find a way to do it.

I went to see the doctor at the end of March 'cause I was not feeling well and had a little issue urinating. The doctor ordered some blood work, including a PSA.

My original PSA in March was 4.6 and my primary Doctor said for my age it was super high (I was 42 ). So he told me to go see a Urologist.
When I was able to go see the Urologist in April he performed a Digital Rectal Exam (DRE) and told me that my prostate was huge for my age. He told me, it was the size of a small apple and he felt a nodule on the right side. Right there he told me he had to do a biopsy! He also ordered a new PSA to make sure the previous number (4.6) was correct.
He gave me ciprofloxacin to help with a little infection. He also told me he was going to give me a couple of weeks to allow the CYPRO to work.
The new PSA came at .9 (???)
Bottom line is he performed the biopsy and it says the following:
DIAGNOSIS
***INTERIM REPORT PENDING EXPERT CONSULTATION FROM DR EPSTEIN 06/04/18***

A - left lateral base, prostate biopsy
- CARCINOMA, SEE COMMENT
B - left lateral MID, prostate biopsy
- CARCINOMA, SEE COMMENT
C - left lateral APEX, prostate biopsy
- CARCINOMA, SEE COMMENT
D- SAME
E - SAME all the way to letter "L"

COMMENT: The carcinoma is present in all core fragments from parts A through part L and occupies 100% of biopsy
POSITIVE: pan-keratin, CK 8- 18, CK 20, P63, P40, Ki-67, SYNAPTOPHYSIN
NEGATIVE: TTF-1, PSA, CHROMOGRANIN, CD45, CD20

They say the reason I do not have a Gleason Score is because this is different than "adenocarcinoma"

Tall Allen said...
PAPUN-

Thanks for that info.

Synaptophysin is usually a marker for neuroendocrine pc, but the lack of chromogranin suggests other types. The cytokeratins, p40 and p63, but with the negative PSA may suggest urothelial cell carcinoma. I'm glad you're having Dr Epstein look at it.

Thanks for all of your help Allen!

Very good data, above, Papun....even from Saipan.

For RO, Cleveland Clinic and Dr. John Greskovich is as good as they come in Florida. I have the names of several good MO's down here, also.

As always, Tall Allen offers fine advise. Investigating those clinical trials should yield lots of valuable data.

Good luck. If you want to talk directly, click on my little envelope to the left.

"Dr Masel is telling me radiation or chemotherapy might help bring it down a bit to be able to operate, but having something so bad in me is scary because It might start getting out at any time."

If you are worried, then you should begin systemic therapy (not surgery) immediately. Hormone therapy stops many kinds of cancer in its tracks and will shrink the prostate quickly. That plus chemo may stop it from progressing any further than it is now. Surgery may or may not be a good option. "Cutting it out" for virulent cancer types may leave some behind - radiation using a wider field may be able to destroy more of it.

I may have some further comments after you post Dr Epstein's analysis.

TA and GARYI... Here's the pathology report.

DR EPSTEIN, M.D., DIRECTOR, ANDRES MATOSO, M.D. , TAMARA LOTAN, M.D.

PROSTATE:

A-L ADAMANTINOMA-LIKE PRIMITIVE NEUROECTODERMAL TUMOR (PNET) EWING SARCOMA, INVOLVING 100% OF ALL CORES. SEE NOTE.

NOTE. Submitted immunohistochemical stains demonstratethe following results:
Tumor is positive for pancytokeratin, CK8-18, P40 AND P63ARE POSITIVE. CK20 STAIN SCATTERED CELLS WITH PARANUCLEAR DOTS. PSA, CD45, CD20 AND TTF1 ARE NEGATIVE. SYNAPTOPHYSIN IS POSITIVE. CHROMOGRANIN IS NEGATIVE. Ki67 STAINS AROUND 40% CELLS.

IMMUNOHISTOCHEMICAL STAINS PERFORMED IN THE JOHNS HOPKINS IMMUNOPATHOLOGY LABORATORY DEMONSTRATE THE FOLLOWING RESULTS: TUMOR IS POSITIVE FOR NKX2.2, SM311, CD99, P63, P40 AND FOCAL FOR CK903. GATA3, PSA, P501S, NKX3.1, MYOGENIN AND DESMIN ARE NEGATIVE. AE1/AE3 IS FOCAL POSITIVE. FISH EWSR1 REARRAGEMENT IS POSITIVE.

BECAUSE CK20 WAS POSITIVE IN A DOT-LIKE FASHION ALONG WITH POSITIVITY FOR SM311 (SEEN IN MERKEL CELL CARCINOMA) AND CD99 AND NKX2.2 WAS POSITIVE (SEEN IN EWINGS/PNET), FISH WAS PERFORMED TO DIFFERENTIATE BETWEEN THESE TWO ENTITIES.

INTERPHASE FISH WAS PERFORMED ON PARAFFIN EMBEDDED SPECIMEN. SIGNALS WERE ENUMERATED MANUALLY WITHIN AN AREA OF INVASIVE TUMOR INDICATED BY A PATHOLOGIST. TWO SCORERS ANALYZED A TOTAL OF 100 NUCLEI FOLLOWING FLUORESCENCE IN SITU HYBRIDIZATION (FISH) WITH A DUAL COLOR PROBE SET FOR A LOCUS ON 22q12 (ABBOTT MOLECULAR). FOR 100 NUCLEI, THE NORMAL CUTOFF IS <15% FOR REARRANGEMENT OF THE EWSR1 GENE REGION. 70% OF OF NUCLEI HAVE A SPLIT EWSR1 SIGNAL. THIS RESULT IS POSITIVE AND INDICATES A REARRANGEMENT INVOLVING THE EWSR1 GENE REGION IN 70% OF NUCLEI.\

Adamantinoma-like PNET/ Ewing tumors have diffuse keratin positivity, P63 staining, and nest formation with prominent dismoplasia and can be mistaken for poorly differentiated carcinoma. Am J Surg Pathol 2015; 39: 1267-74.0

Looking forward for your input!

Papun,

Thank you for posting your pathology report. You have an unusual case, and my only suggestions are:

First, you really, really need to be at one of the top research centers. You don't have a run of the mill case, so your treatment may well be very different from the norm. Don't decide what to do until you have actually talked to experts with "MD" after their name about what is needed.

Second, because of how unusual your pathology is, make sure you ask what experience your treatment team has with this kind of diagnosis. And, if there is any literature about it that is comprehensible to the lay person.

It looks like you've got a tough row to hoe ahead. Find the experts. Listen to them. Don't listen to those who try to tell you that your case isn't any different from hundreds of others. It's not.

180 is very large, but yes it can be that large. A few years ago a man on the forum had something like 240 as the size.

Given the Epstein pathology information I would be getting to top grade medical oncologists experienced with the tough cases. One of the best in the south is Dr. Oliver Sartor at the Tulane University Medical Center in New Orleans. I would contact his office and have Epstein's report sent to him for his assessment.

Further, TA has given great information that you can immediately start ADT and slow this down while you decide on a treatment. With the volume of PCa, my urologist would dismiss surgery as the probability of needing salvage radiation would be too great. That is a situation you want to avoid. Have you run any of the nomograms to get direction on treatment methods and there probability of success? My docs showed them to me when they explained the PCa. This could help you.

Also in my reading I visited some actual case studies. In each instance the prostate was very large and consistent with your prostate size. In one case the PSA was 1.45, also consistent with your very low PSA. As TA has referred, the treatment methods all included various combinations of chemotherapy. Some used surgery and some used radiation to de-bulk the prostate area. Do you have any results of the bone scans or CT scans?

Not to alarm you, but your reference to a time bomb is fitting. Not that the tumor will explode, but that this type of cancer is extremely rare and generally aggressive according to the information I have been reading.

JNF,
Wao! Thanks for all the valuable information, definitely will follow the great advice!

garyi said...
PAPUN.....JNF is giving you excellent advise. Getting to MDA in Houston could serve you well. They do phone consultations for exceptional cases. Sadly, there are no PCa medical oncologist specialists down here that I know of.

You have a unique and aggressive cancer. Speed is of the essence. Good luck.

Thanks Garyi,

I'm calling MD ANDERSON on Monday to see if I could get information or maybe they might be able to do the consultation over the phone. I was looking at their Proton therapy for prostate cancer and that might be a good solution to shrink it before surgery.
Definitely they have to get it out as the results of the CT and BONE SCAN indicate that it's (or might be) still contain within the organ.
Wednesday the 27th. is my appointment with Dr. Gonzalgo, so I believe between him and MD Anderson I should be able to determine the best path.
Thanks for all the great advice and moral support to all of you guys! This site and its members are truly a blessing!