What next?: I was d/x with stage 4 PCA... - Advanced Prostate...

Advanced Prostate Cancer

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What next?

Squirrel71 profile image
20 Replies

I was d/x with stage 4 PCA in March 2020, Gleason 7 (4+3) with lymph node Mets and a PSA of 172 (see profile). After one month of Casodex I started on Lupron and Erleada (Apalutamide) and had a PSMA/PET scan followed by 6 x 6 GY radiation to my prostate in Dec. 2020. For the past year my PSA has been undetectable (<0.008). My most recent PSA (Feb. 2022) increased to 0.025 and my ALP has also risen but still well within normal range. Does this mean I am no longer hormone sensitive? Is this considered BSR? What would be my next course of action? My MO in Toronto has left the country and I am not comfortable with the remaining choices at the hospital I am currently going to. Can anyone recommend an MO that specializes in prostate cancer in the Toronto area?

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Squirrel71 profile image
Squirrel71
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20 Replies
Tall_Allen profile image
Tall_Allen

Was your pelvic LN area irradiatiated when they did your prostate? Are you still taking Lupron+Erleada? Your PSA is quite low and is nothing to be concerned about.

Squirrel71 profile image
Squirrel71 in reply toTall_Allen

Hi Allen. I was told that they couldn’t irradiate my pelvic LN’s because of my anatomy. I am still taking both Lupron and Erleada. I respect your opinion and feel somewhat relieved by your comment.

Tall_Allen profile image
Tall_Allen in reply toSquirrel71

Thanks for clarifying that. There isn't anything worth doing until your PSA is over 2

I read that you are at Princess Margret -Excellent hospital . When you MO left did they not assign another to you? My husband is at the Odette centre at Sunnybrook and this too is an excellent cancer centre. SOC and beyond for both hospitals.

hopeful1956 profile image
hopeful1956 in reply to

My husband is being treated at Sunnybrook Odette as well. Very caring people there.

My most recent PSA (Feb. 2022) increased to 0.025 and my ALP has also risen but still well within normal range. Does this mean I am no longer hormone sensitive?

No, I think it means you need to stop getting ultrasensitive PSA tests. A PSA of .025 does not mean anything and there is no conclusion you could draw from it. Just have to keep a eye on it and try not to stress about the PSA (Permanent State of Anxiety)

Squirrel71 profile image
Squirrel71 in reply to

Thanks cancerbgone. I’m not stressed but I do like to be prepared. I will know more after my next PSA test.

Magnus1964 profile image
Magnus1964

First, why only one month on casodex? That's not enough time to see if it is working. Second, PSA scores in your range are not significant. Small rises of less than .5 could be due to irritations in the prostate bed. Third, you are not castrate resistant until you have failed more than one ADT drug.

CAMPSOUPS profile image
CAMPSOUPS in reply toMagnus1964

IMHO The Dr. planned on treating with Lupron/Eligard only.Casodex is given for 2 weeks to a month prior to the first Lupron injection to avoid the testosterone flair that can otherwise occur with the first dose of Lupron.

Squirrel71 profile image
Squirrel71 in reply toCAMPSOUPS

Thank you for explaining the reason for the short use of Casodex.

Squirrel71 profile image
Squirrel71 in reply toMagnus1964

I feel somewhat relieved to know that my PSA increase may be of little concern. I was wondering if it does sometimes decrease again even if you don’t do anything differently.

Magnus1964 profile image
Magnus1964 in reply toSquirrel71

Your PSA may go back down on it's own.

Squirrel71 profile image
Squirrel71 in reply toMagnus1964

Thanks Magnus. I will have another PSA test in 3 weeks.

2dee profile image
2dee

You need to find new MO.Insurance generally allows you to seek 2nd opinions.

Do a little research to judge the best choices, in your budget, location, etc..

You should be able to learn far more about YOUR disease and what SOC care is best for you.

Reform a team of physicians you feel comfy with and move on.

2Dee

Squirrel71 profile image
Squirrel71 in reply to2dee

Hi 2dee. I have another MO for a second opinion.

Sam1962 profile image
Sam1962

Dr. Urban Emmenegger. The best.

in reply toSam1962

He is my husband’s MO . He lovesHim

Squirrel71 profile image
Squirrel71 in reply to

Great. He seems like the perfect MO.

Fiddler2004 profile image
Fiddler2004

Congrats on the great numbers.... 🙏

Squirrel71 profile image
Squirrel71 in reply toFiddler2004

Thanks.

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