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PATH REVIEW FROM MSK REREAD IDENTIFIES FOCAL" EPE" EXTRAPROSTATIC EXTENSION.

JWS13 profile image
16 Replies

I just got the path review from Sloan Kettering : IT SAID:

"In Part 4 (left posterior) they did identify FOCAL EXTRAPROSTATIC EXTENSION.."

(They now agreed with UCSF )

I don't know what that means except it may be out of the capsule..I don't know if "focal" makes it better and maybe not out of capsule?

Scheduled for SBRT w UCLA 1/12/ -do I seek another treatment? (i.e brachy,hifu, )....

This pretty well shook me up...

All thoughts, info, or whatever would be real helpful now...thanks

Tall Allen ..do you have some direction here...IS the "Focal " rather than Non-focal helpful?

Gleason 7 (4 +3) PSA 6.1

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Tall_Allen profile image
Tall_Allen

The only thing that would be helpful is an opinion from Epstein. Did you get that?

JWS13 profile image
JWS13 in reply toTall_Allen

I am not quite sure what I am asking Epstein to do...Both UCSF and MSK have found EPE? I assume Epstein would find the same? what I want to know is where they found it next to the adipose tissue ..is that considered "metastasized " or still just on the border of the Prostate? (and does that make much of a difference as to sbrt treatment(will it be able to still cover that area and the "EPE" with radiation given Kishan uses a 4mm margin ..)As you know the border is not well defined and surrounding it is the adipose (fatty tissue (ffa's) and MSK puts the "EPE" at the left posterior of the Border is the cancer. The path review doesn't explicitly say it has broken through the border? I just want to know what danger I am in? did it breakthrough? would the review report definitely note "breakthrough" if it had? how fast will it spread in this area? and what treatment will effectively take this cancer out and what collateral damage am I facing? Can my scheduled SBRT do the job and radiate the border where "EPE" is as well w/o risking more dangerous side effects? will Epstein answer these questions as well? Thanks Allen...thoughts? (sorry so many questions...worried...)

Allen , would you happen to know three of the best Radiation or Medical Oncologist at Cedars-Sinai, (not just 3 who see many patients but 3 of the "top in the field" ? would really appreciate it..thanks

Tall_Allen profile image
Tall_Allen in reply toJWS13

The EPE is not a metastasis but increases the risk that it has metastasized. It puts you at stage T3a, which is "high risk.". High risk patients usually get 2 years of adjuvant ADT (! year with brachy boost therapy), but I'm not sure you need that much, given the focal nature of your EPE and your otherwise intermediate risk characteristics - see what Kishan says. You should ask for and get a PSMA PET/CT to assure that you don't have any distant metastases.

What an RO does is contour around the prostate - including any EPE - and add a safety margin on top of the contour. That is true for any kind of prostate radiation, SBRT or IMRT. Kishan at UCLA uses a Viewray MRIdian Linac, which checks the position of the prostate+margin in a process called "gating." He also has a VMAT linac that checks the position with a CT and X-rays based on 3 gold fiducials that are placed in the prostate. He uses a smaller margin when he treats with the MRIdian linac. Toxicity increases with margin size.

Side effects are usually irritative and temporary. Mine (urinary frequency, hesitancy, getting up more at night to pee) lasted for about 2 weeks. The EPE will not affect side effects. It will preclude use of SpaceOAR, which IMO has minimal benefit anyway.

At Cedars, Howard Sandler is the best.

You are also a good candidate for brachy boost therapy. Mitch Kamrava at Cedars is an expert at that.

JWS13 profile image
JWS13 in reply toTall_Allen

WOW>>>You are a gift...Had PSMA PET prior to biopsy in august 2022 -NO SPREAD OUT OF THE CAPSULE- Are you sure it will preclude Spaceoar as I want all the protection I can get...

Allen ...thanks ..you really take the time to give accurate,clear and informative defined responses.

Tall_Allen profile image
Tall_Allen in reply toJWS13

SpaceOAR would be dangerous- it can trap the cancer at the EPE and press it against the rectum, protecting the cancer from the radiation. That's what happened to a friend of mine --it caused him no end of trouble and pain.

As I said, it does little:

prostatecancer.news/2017/01...

It is totally unnecessary if you are using MRIdian, where one of the benefits is it precludes any invasive procedures.

JWS13 profile image
JWS13 in reply toTall_Allen

Thanks ..can't have mridian as it uses an MRI -have defibrillator.. what if Kishan is using CT & X-RAYS can that protect rectum...can't do ADT -have cardiac condition -does that decrease enormously the chance for cure or increase the chance for recurrence or both?

Tall_Allen profile image
Tall_Allen in reply toJWS13

VMAT with fiducials is excellent (it's what I had). As I said, discuss ADT with Kishan- he wrote the book.

JWS13 profile image
JWS13 in reply toTall_Allen

terrific...best..jws

janebob99 profile image
janebob99 in reply toTall_Allen

Hello, Tall_Allen. I have T3a, with EPE. I don't understand your comment about how a a spaceOAR could "trap cancer at the EPE and press it against the rectum". Has this been medically confirmed as a mechanism? Thanks

Tall_Allen profile image
Tall_Allen in reply tojanebob99

Yes- it should never be given to high risk patients.

janebob99 profile image
janebob99 in reply toTall_Allen

Thanks !

Yearofthecow profile image
Yearofthecow

I think your questions need to be directed where you are having your treatment done, and if this changes the treatment plan.

From my understanding if you want to determine spread, PSMA would be the best tool for that.

All the best

John

JWS13 profile image
JWS13 in reply toYearofthecow

Had Psma Pet and no spread out of the capsule 6 months ago...2 months before biopsy . That's what is so frustrating as the only thing PSMA doesn't pick up is something like .02 ml so the EPE must be microscopic and that is my concern that it could be missed because I can't have an MRI (pacemaker) . MSK RO is out of the country and unavailable to talk, have appts. today with both RO's in LA . However it's not like their going to go out of the way to explain details of EPE , they are going to say generally SBRT treatment "SHOULD" cover it...we'll see today if I get some detailing and some explanations to clear up where near the capsule it is, if I had a PSMA Pet and no spread , than where in the left posterior is it? and how do you plan to get it without even knowing it existed before I got the reread by UCSF....

thanks John

wagscure259 profile image
wagscure259

I would humbly recommend an opinion from Dr Epstein. His authoritative opinion would allay any doubts I would ever have and that peace of mind I would get would be invaluable. Just my two cents worth. Best to you

JWS13 profile image
JWS13 in reply towagscure259

not concerned on the reread of gleason score...both msk and ucsf have read path and agreed gleason 7...concerned only about ECE which UCSF found, I notified MSK , they re-reviewed and agreed there is focal ECE there....so I doubt Epstein is going to counter this..

thanks

JWS13 profile image
JWS13

Thanks Fast,

Had Psma Pet and no spread out of the capsule 6 months ago...2 months before biopsy . That's what is so frustrating as the only thing PSMA doesn't pick up is something like .02 ml so the EPE must be microscopic and that is my concern that it could be missed because it was not on the PSMA and I can't have an MRI (pacemaker) . MSK RO is out of the country and unavailable to talk, have appts. today with both RO's in LA . However it's not like their going to go out of the way to explain details of EPE , they are going to say generally SBRT treatment "SHOULD" cover it...we'll see today if I get some detailing and some explanations to clear up where near the capsule it is, if I had a PSMA Pet and it showed no spread and no EPE, than where in the left posterior is it? and how do you plan to get it without even knowing it existed before I got the reread by UCSF.... Fast , you are correct UCSF did find the "EPE on path review adjacent to adipose tissue and did not identify it on path as "metastatic" . You are correct that I have to find out if the border bed of fat tissue (adipose tissue) surrounding the prostate is not considered to be a metastatic "jump" by the cells. In fact , this "EPE" may have been there all the time and never moved .Fast, you say EPE is treatable , SBRT has a 4mm cap on its radiation and then maybe 1 mm spillover (Dr. Kishan) and I have to find out if the adipose border is less than 5 mms so it can be treated. (is that what you meant by treatable. You have been very helpful...thanks JWS

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