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Advanced Prostate Cancer

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Rising PSA and want to be the best advocate!

Abcsoup73 profile image
7 Replies

Hello all,

I have been following posts here for quite some time, and need a little advice. My father, who is 73, was dx'd with PCA in 2002, PSA 4.2, radical prostatectomy at Mayo, Gleason 3+4, one positive margin. PSA undetectable until winter 2003. Had seven weeks of radiation to the prostate bed at Mayo in early 2004. PSA remained undetectable until 2014. Have been under the care of Dr. Kwon at Mayo since 2014, with monthly Lupron injections, and C-11 choline PET scans and endorectal MRI's. In 2014 scans showed the cancer was around the urethra and a possible groin lymph node. His options were Lupron or trying cryotherapy for the urethra and surgical excision of lymph nodes. Since the cryo would have left him almost completely incontinent, my father decided to forgo the cryo and excision of lymph nodes and chose monthly Lupron as treatment. His PSA had been undetectable up until June 2021. His monthly PSA's over the past six months have been:

June 0.15

July 0.12

August 0.15

September 0.18

October 0.14

November 0.18

December 0.21

His last C-11 Choline Pet scan and MRI were in October, and they thought they saw a bit up uptake in the prostate bed.

We go back again next week for another C-11 choline PET scan, PSA, and meeting with Dr. Kwon. Other than two compression fractures in his lumbar area, hot flashes, and some fatigue, he has tolerated Lupron quite well over the years. He cannot have the prostate bed radiated again, so I'm wondering what the best options are for additional medications when that time presents itself...Zytiga, Xofigo, Provenge, Jevtana, etc.? I've always been his biggest cheerleader and he is the greatest warrior I've ever known in my life. I go to every single appointment with my parents and want to make sure I'm doing all I can to make certain that I'm his biggest advocate. Thank you for your time!

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Abcsoup73
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7 Replies
Bkraus1 profile image
Bkraus1

Sounds like he has done well with Lupron for a very long time. You could consider a PSMA pet scan to see if there is an area that could be radiated. A trial of second generation hormone like zytiga may be an easy option.

Tall_Allen profile image
Tall_Allen

The groin lymph node is what is problematic because it is outside of the prostate drainage area, which means the cancer is systemic. So, it's time for systemic therapy.

Mayo invested a lot of money in the c-11 Choline PET and they continue to offer it to patients even though it is now outmoded. PSMA PET scans are more sensitive and have replaced it. You can use the following locater to find a PSMA PET scan (called "pylarify") near where he lives.

pylarify.com/site-locator

But, frankly, I doubt whether it will change his treatment decision, so he may want to skip PET scans at this point. It may be useful as a baseline scan to replace the C-11 Choline scans.

As for systemic therapies, I would recommend he discuss ADT amplified with either Zytiga, Xtandi, or Erleada (if insurance will cover it). It is possible that he may only require less than a year of such amplification, and can have a break afterwards. Please see my reply today to epfj3333 who is in a similar situation:

healthunlocked.com/advanced...

Even though they found a lymph node metastasis on a C-11 Choline scan, it was not found on a bone scan/CT, so he might still qualify for the "androgen annihilation" trial. His doubling time (11 months if all the data since June is used) is slightly too slow to qualify (≤ 9 months), but that can change with a PSA this month.)

Tall_Allen profile image
Tall_Allen in reply to Tall_Allen

BTW- the other medications you asked about (Xofigo, Provenge and Jevtana) are only for men who are castration resistant, which he is not.

Abcsoup73 profile image
Abcsoup73 in reply to Tall_Allen

Thank you! The website says Mayo has this type of scan. I’ll be asking about it at the appointment this next week!

tango65 profile image
tango65

Since you said a possible groin lymph node , I would request a PSMA PET/CT to see if the node is PSMA positive and if the are distant metastases. PSMA PET/CT are much more sensitive than the Choline PET/CT.

If the node is PSMA positive (PC) you could request a biopsy of the lymph node to do genetic, histological and IHC studies which could be helpful to decide future therapies.

Perhaps the PSMA PET/CT may also help to decide if there is cancer around the urethra, although is not a good technique because the ligand is eliminated by the urine.

You could also considered to get a second opinion in a center of excellence such as Memorial Sloan Kettering in NY. You have time his PSA been oscillating between 0.1 and 0.2 (round numbers) for the last 6 months. It seems that his cancer is pretty stable and it is still responding to ADT.

Assuming there is really cancer around the urethra and there is a lymph node in the groin, I would consider to have Lu 177 PSMA treatment abroad (Europe or India) if financially possible or the trial at the Sloan Kettering Center of radiation and Lu 177 PSMA in for hormone sensitive patients, perhaps he could qualify:

clinicaltrials.gov/ct2/show...

Lu 177 PSMA is a systemic therapy and it would treat the possible cancer around the urethra and the lymph node in the groin if it is a metastasis.

Assuming you are referring to the inguinal node, that would be very unusual for prostate cancer. The choline scan is jumpy and sensitive, with other things that can light it up. perhaps it would be better to get a different scan to confirm a rare inguinal node cancer. Are there any treatments besides radiation and cryo available to the urethra area and prostate bed? That would be a question I would ask. The Lutetium idea is a good one, but liutetium generally is a disappointment

j-o-h-n profile image
j-o-h-n

Greetings Alpha,,,,,,

I know this may be redundant to you post but if you can please complete the following for your dear DAD (voluntary):

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

(Chronia Pola John's)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/07/2022 1:57 PM EST - Today is Greek Orthodox name day for JOHN's.

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