Scary PSA results: I was diagnosed in... - Advanced Prostate...

Advanced Prostate Cancer

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Scary PSA results

7OaksTom profile image
28 Replies

I was diagnosed in October 2023 with Gleason 4+5=9. Tissue came from TURP. PSA was 11.8. PSMA Pet was negative for METS.

Started ADT on November 9. Did 28 sessions of IMRT from Feb 12, 2024, to Mar 21, 2024. Nadir was .8 on Mar 26 and then the last two have been 1.5 and 3.1.

RO said 2.8 was the "something more needs to be done marker" I am seeing MO next week. What questions should I be asking?

I am 78 and in better than average health. Father died from PCa at age 79 in 1999.

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7OaksTom profile image
7OaksTom
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28 Replies
WisdomSeeking profile image
WisdomSeeking

You wrote in previous post that MO was hesitant about adding abiraterone due to liver enzyme issue. Ask if you can add Xtandi/Erleada/Nubeqa.

God_Loves_Me profile image
God_Loves_Me

What's your genetic testing results ?

7OaksTom profile image
7OaksTom in reply toGod_Loves_Me

Only genetic testing has been for gene mutations. I have the ATM gene.

God_Loves_Me profile image
God_Loves_Me in reply to7OaksTom

What is the testosterone ?

7OaksTom profile image
7OaksTom in reply toGod_Loves_Me

The most recent tests:

Feb 27, 2024 16 ng/dL

Jan 23, 2024 4 ng/dL

Dec 7, 2023 13 ng/dL

Jun 12, 2012 483.8 ng/dL

God_Loves_Me profile image
God_Loves_Me in reply to7OaksTom

T level is pretty good

Mhma profile image
Mhma in reply to7OaksTom

my husband has the ATM gene and the biopsies also showed a high mutation burden - they tried Keytruda immunotherapy and it has kept the cancer at bay with an undetectable PSA for over 2 years. Might be worth talking with your Dr about immunotherapy.

Jewelrylady profile image
Jewelrylady in reply toMhma

Did they add the keytruda right away or was he castrate resistant when this started? How were side effects.

Mhma profile image
Mhma in reply toJewelrylady

He had been treated with doxatel, radiation, eligard and xtandi. - when those treatments failed (they kept it under control for 5 years or so) the Drs did genetic testing and thought he would be a good candidate for immunotherapy. There were no real side effects for several months and his PSA levels went down to undetectable. Unfortunately he was one of the very few who had the side effect of his immune system also attacking his pancreas. He is now a diabetic but that is very manageable.

God_Loves_Me profile image
God_Loves_Me

I would ask the following questions

What are actionable treatments for ATM Gene?

Can I try "Xtandi/Erleada/Nubeqa"?

What is my testosterone? If there is any above-average range, then ask for ADT.

Can I do a PSMA PET Scan? PSMA Pet scan does not show anything when It is smaller than 5mm

God_Loves_Me profile image
God_Loves_Me in reply toGod_Loves_Me

Say Yes if your MO suggest any clinical trials.

God_Loves_Me profile image
God_Loves_Me in reply toGod_Loves_Me

Agree with Tall_Allen :

Then it might be a bounce due to cancer cells dying. You have to just keep monitoring -- it's too soon after radiation to react:

Please ignore my questions and request for PSMA Pet Scan as well.

Tall_Allen profile image
Tall_Allen

Did you miss your ADT shot recently? For high risk PCa treated with IMRT, you should have 2 years of ADT.

7OaksTom profile image
7OaksTom in reply toTall_Allen

I have not missed any of my Eligard shots. The last one was March 29. Next one is June 29.

Tall_Allen profile image
Tall_Allen in reply to7OaksTom

Then it might be a bounce due to cancer cells dying. You have to just keep monitoring -- it's too soon after radiation to react:

prostatecancer.news/2018/03...

Docker53 profile image
Docker53 in reply toTall_Allen

Good Morning, my husband's PSA has gone up over the past 2 months. He is on abirtaterone with Prednisone for 2 1/2 months. He had tagarted radiation in his spine and collar bone. Would this make his PSA results go up after completing radiation 6 weeks ago. His next blood work is June 10th. We are praying it's down. Currently at 64 as of a month ago.

Tall_Allen profile image
Tall_Allen in reply toDocker53

I hope it goes down.

vintage42 profile image
vintage42

"... October 2023 with Gleason 4+5=9.... PSA was 11.8. PSMA Pet was negative for METS. Started ADT on November 9. Did 28 sessions of IMRT from Feb 12, 2024, to Mar 21, 2024. Nadir was .8 on Mar 26 and then the last two have been 1.5 and 3.1...."

Your nadir was not very low for ADT plus radiation. And while the PSA often bounces for awhile after radiation, your bounce is too quick and high. Ask your MO what he thinks went wrong.

Perhaps your cancer was radio-resistant (I think mine was as I have recurrence). Or perhaps there are now mets outside the radiated area that are causing the PSA (when my PSA rose, it was due to pelvic node mets). Maybe the PSA doubling will justify another PSMA PET scan to see where the cancer is now. If in nodes, they can be radiated (mine were).

I expect the MO will recommend escalating the ADT to doublet or triplet therapy.

EdBar profile image
EdBar

Get another PSMA done, something is festering somewhere, perhaps a round of SBRT can knock it out.

Ed

quietcorner profile image
quietcorner

My partner is in a similar situation after finishing treatment Dec 2023, last ADT shot same time. His PSA wasn't as high as yours, but it hadn't gone down to a respectable nadir, either. After his March 2024 tests T 350 PSA 1.6, he was told 1) wait, too soon to tell, the c-cells are still dying, and 2) wait until the 6-month PSA test results, which will be June. 6-month is going to be far more accurate.

It is encouraging that your T was 16 only 2 months after the Eligard shot, whereas his was 350 at 3 months after the Eligard shot.

Mgtd profile image
Mgtd in reply toquietcorner

Hoping for good results on your June 6 doctor’s visit. That “PSA Anxiety” always gets to me a couple of days before the blood work. I guess it is just a natural part of this disease. I do my best to hide it from my wife. No need to have both of us worrying.

If you remember correctly your partner and I are on a similar time schedule and treatment plan. I will get my PSA and T done early this coming week and meet with RO after that. Between my MO and RO I have been having my PSA checked every 3 months for the last year.

No T testing once it hit 233 two months after stopping ADT. However this time the RO ordered a T test which is strange or perhaps the RN who placed the order just made a mistake in placing the order.

I am coming up on my one year anniversary of the radiation to prostrate and pelvic area so hopefully she will have some definitive thoughts on how the radiation and 6 months of ADT (2 prior and 4 post radiation) worked or is working.

turkeyjoe1 profile image
turkeyjoe1

You had a PSA test 5 days after IMRT? You should have waited 3 months for 1st test. There is alot of things still happening in there. To soon to test. Sounds like just a bounce. Best wishes

Teacherdude72 profile image
Teacherdude72

My G9 PCA was diagnosed in fall 2015. After initial treatments four years ago PSA was up to 4. Eligard failed and started monthly Lupron with Nubeqa. PSA dropped to less than 0.02. Now on sixth month of holiday from treatments and all good I am 76 now.

janebob99 profile image
janebob99

Time to do another PSMA-PET scan.

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

Scary PSA results - They're always scary. Your dear Dad was being treated in the late 90's which now is like being treated in another planet. Your his age now, but there are tons more of Pca arrows in the medical community's quivers....You'll be around for a very long time......

Strange feelings for me..... My dear Dad passed at the age of 66 and I'm still kicking at the age of 87, which means I'm 21 years older then my Dad. WoW!

Good Luck, Good Health and Good Humor.

j-o-h-n

Jac_J profile image
Jac_J

Well. You are a lucky man to be so healthy at your age. A very low PSA result also if you look at what other ppl here deal with.

Don’t sweat it. Keep healthy and put things in perspective.

cancerfox profile image
cancerfox

When I was diagnosed with PC my PSA was 7.5 and Gleason score was 9. They immediately started me on 13 months of Eligard, 25 IMRT sessions, and LD Brachytherapy. My PSA so far since then has been around .05. You may not have done enough yet. 🦊

7OaksTom profile image
7OaksTom

Update: Again, finish IMRT on Mar 21. PSA was 11.8 on 10/10/23.

PSMA PET on 6/20/24 CONCLUSION:

1. New lateral left eighth rib expansile irregular sclerosis exhibiting moderate radiotracer binding consistent with a metastasis.

2. Two tiny intrathoracic lymph nodes exhibiting mild radiotracer binding could represent metastases.

3. Decreased size of posteriorly exophytic right lobe prostate gland lesion without radiotracer binding.

4. Small region of mild radiotracer binding within the central prostate gland could represent urethral excretion or recurrent/residual disease.

5. Other findings as described.

PSMA-RADS Assessment: PSMA SCORE 5.

MO wants to start me on Xtandi (copay $3,285 per month at Kaiser) keep Eligard and then add Talazoparib . I asked about chemo and she said not yet. Should I be pressing her on chemo?

Should I be asking for radiation for the eighth rib met and the intrathoracic lymph nodes?

Regarding the co-pay, does anyone have VA health and know what the co-pay is for xtandi?

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