Second MRI - Likely extracapsular extension

[SierraSix]

I've been busy doing all the planning for my SBRT treatments, scheduled for Nov 29th, I am currently signed up for 5 SBRT + 18 months of lupron. We did a second MRI today as part of the planning session(s) and it looks like they found a "likely" extracapsular extension. I don't think that was in the first MRI report. This sounds concerning. I have a Gleason 4+5 but originally DX as localized, PSMA Pet scan was clear (Sept '22)

Does it change the status of my cancer?

Is it still localized?

How would this affect the treatment plan?

Can we still cure this?

I have not yet talked to my Dr., as we just got the report on the patient portal. I'm sure I'll talk to him tomorrow but curious if anyone can provide more clarity.

Thanks

Mark

[Yearofthecow]

IMHO, I think the PSMA would have more weighting than the MRI

Likely EPE is much more subject to interpretation, and if you are having SBRT, I would assume they would treat a little beyond the prostate capsule to be on the safe side

It would be interesting to see what your physician thinks

All the best

[Tall_Allen]

It doesn't change a thing. You were high risk (localized) before and you are high risk (localized) now. It is still curable with whole pelvic radiation and an extra boost to known sites and 2 years of hormone therapy. Consider this clinical trial:

clinicaltrials.gov/ct2/show...

SpaceOAR would be a bad idea though.

[SierraSix in reply to Tall_Allen]

ok...that is somewhat comforting. I sort of had that thinking. To late for SpaceOar. IT was already done. hopefully we can adjust..etc Hopefully Dr Kishan will be able to solve this one

[SierraSix]

Just a follow up from the Dr. He said it does not change anything. No gross extension. Continue as planned. @Tall_Allen, I will review that clinical trial over the weekend. Also thanks to everyone for your help. I'm still new to this club so I'm still learning and getting use to managing this type of information.

[Ducttape]

Hey Mark! hang in there. I am about 6 months past HDR (they did use SpaceOAR) and then 5 weeks of EBRT,. full pelvic radiation and the targeted prostate and seminal vesicle.

I also started with Cipro about 3 months or so before they dove in to main treatments. (as I understand to help starve off small or remote cancer buggers; mainly to compare an initial Bone Scan/CT where there were some "blips on the radar" to follow up bone and CT scans to determine of they were mets or injuries (old athletic injuries - it was old injuries( a few fastballs to the ribs and some blind sided tackles take their toll So the CIPRO it wasn't so much to lower PSA drastically.

My adventure was interesting in that my first Uro doc did a standard 12 core needle biopsy and only uncovered three areas - all rated gleason 3+3. gave me a a five minute lowdown of the three options Watching, RP and Radiation and said "you choose". My choice was to head out of the office, grab a beverage and think and do more research on my own. Found a center of excellance (MD Anderson in Arizona) . they took a look at the MRI and the prior biopsy info -- bascially said they suspect the prior Biopsy and MRI were not read correctly. (prior doc indicated that I had some "congestion" in Seminal vescile, not cancer - wrong!..........

have your biopsy and info read by John Hopkins would be a great recommendation just to have a second set of eyes.

TA is spot on saying you have high risk before and after. It can be "cured". Keep optimistic and power on.

SO to youR question on the treatment plan - SBRT and Lupron. The WORST part of the radiation process was finding how to keep my bladder full enough as a baseline for radiation treatment (the trail run of the EBRT to model all the parts and deliniate bladder and prostate walls). the radation is easy - no pain. Some post procedure urinary pain for a few days after the first HDR procedure-- but the PA/Nurse said pick up an OTC medicine called AZO - worked great - although peeing orange for a few days was different ;

LUPRON -- the devil in disguise. I have been on for about 15 months and the Medical Oncologist says at least 2 years. (Dang! the RO thought I might be able to go 12 months plus a few.) so expect to be on it for a bit. the side effects for me have been the hot flashes (which my wife says EVERY man should have to go on Lupron so they feel how menopause is for women -- however I have not had the extra urge to binge watch Hallmark Christmas movies or eat a pine of ice cream and cry when they show Subura commericals with puppies... but wow, emotions can swing wildly ever now and then. Stay positive, march on!)

HOWEVER, my wife reminded me that right after my lupron injections I get super active and find any project I can, so she suggest that you have a honey-do list at hand!

The complete loss of sexual appetite and ED is more surprising, but others have warned about it and I anticipated that -- but when it is real, it is a bummer. (Generic Cialis has worked off and on.) Yes, going from Sausage and Grapes to twigs and raisins truly sucks!

I do find that if I do not keep active, the weight gain sneaks up on you. Muscle loss is notable as well, if I just stop walking or riding a bike for several days.

All in all - the diagnosis of major Cancer is a slap to the head; the processes are not bad; the Hormone therapy is a bummer, but know that they have eyes on it.

you can live with it, or stress about it and lose

And my only fear now is my Mom will greet me at the heavenly gates and give me a D on my grammar and spelling !

Party on,

Ducttape Tom

[SierraSix in reply to Ducttape]

Thanks Tom for the insights, I plan to march on and keep learning from all those who have proceeded me. Amor Fati!