Since July 2022 I have been on Lupron after a 9 month break. During the entire time my testosterone remained < 20. My PSA remained nearly constant at 0.30.
10/17/22 0.286
1/20/23 0.321
4/24/23 0.294
If PSA has gone even by small amount, my MO would have ordered PSMA CT scan. Is it advisable to have the scan now because PSA has not decreased significantly. Or should I wait for the PSA to go up?
I have a 3 month Lupron scheduled for July 31.
Don't wait. Have pelvic LNs irradiated now.
Why are you saying I shouldn't wait and get pelvic lymph nodes to be irradiated? In 2018, metastatic prostate cancer was found in multiple pelvic and abdominal lymph nodes. Since then I have been on intermittent Lupron. PSA always decreased rapidly to <0.1 while on Lupron and increased during the break never higher than 1.1. I thinking is that if PSA increases by July, then I should have PSMA CT scan and decide on appropriate treatment depending on the result of the scan.
Abdominal lymph nodes? Where exactly? The dimensions have been expanded:
redjournal.org/article/S036...
If not for salvage radiation, why are you eager to have a PSMA PET scan?
Aren't retroperitoneal, upper and lower retrocaval nodes abdominal? The PSMA CT scan was suggested by my MO. He also said if the scan identifies a single lymph node radiation can be used. Let me ask your opinion on when should I consider adding androgen receptor to Lupron. Should I wait for the PSA level rise above a threshold with T remaining <20. What happens if my PSA hovers around 0.3 as it has been doing since October 2022?
Discuss dimensions of salvage radiation with your RO in light of the new guidelines.
I don't know of any benefit in playing whack-a-mole with individual LN metastases.
I do know of a benefit of 3 years of Lupron+2 years of abiraterone.
Discus having SBRT radiation of the mass attached to the prostate, the pelvic lymph nodes and 2 years ADT with 2 years of abiraterone.
Dac, there is merit to what Allen writes. Plus, age and existing co-morbidity factors enter into the treatment equation. While I disagree with some methodology in SOC, I acknowledge that it is the best outcome in palliative treatment of this bastard disease. I went metastatic in the Spring of 2004 with at least two bone lesions in my spine.
The reason whack a mole radiation fails is primarily on his mutant cells travel through the body. As explained to me by Dr. Robert Amato; a Professor and Researcher of Genitourinary Disease who was considered a world class expert. He explained to me the term “micro-metastasis”. Very small, unseen cancer cells leave the prostate capsule traveling by the the vascular and lymphatic system eventually gathering to mass and multiple within the body.
His research showed depending on the initial scope of disease (minimum tumor burden) and strength of body to withstand the introduction of infusion and ingestion of chemotherapy agents was key. He told me that the cure for cancer was found in 1978. The problem was that the treatment killed you faster than the cancer...... so he spent a lifetime researching what chemotherapy doses and agents worked the best for systemic treatment. And systemic treatment is needed. That is why what Allen writes about works the best today as a SOC.....
I was fortunate to be one of nine in his clinical trial 19 years ago that had complete remission. Now, some say antidotal, but he told me “cured” in 2010. Stopping Lupron and adding testosterone a year later..... Dr A left us in 2019 from Gliobastoma. I am still being studied by Professors and Researchers at the medical school quarterly. I have been told that it is an ongoing debate among the scholars...... we will see...... until then, I am enjoy for life at 76.
As I write this I am well aware that scope of metastatic disease is important..... some are like me are diagnosed very early, most in this group are initially diagnosed as metastatic; after the disease has gained a strong foothold in one’s body. Everyone is different!
I had Brachytherapy and IMRT as my primary treatment in 2003. My PSA never really came down. Dr A explained that due to micro-metastasis, I was really metastatic before my first primary treatment and that it mattered not my primary treatment, whether prostatectomy or radiation therapy.
Regardless, we are where we are - in the hands of our Creator, our positive attitude, and the knowledge and skill of our physicians.
As an aside, it pains me to see those (even those who shared their thoughts since 2016) with a different method, be it nutritional or alternative medicine booted from this group - even those with advanced degrees as opposed to those who do not have metastatic prostate cancer - just doing their best to live. Reflecting, no one in the Advanced Prostate Cancer Usenet group in 2005 poo-pooed the Brit who was convinced that drinking his own urine was key or the good Mathematics and Statistics Professor from the University of Chicago and his study of testosterone. We all read with interest and dealt with advanced prostate cancer in our own ways..... my gosh we are all adults capable of deciding which is the best course for us..... take it our leave and move on.... (okay, I am off my soapbox and off topic) in the end your treatment path is your business.
I wish you the best in fighting this bastard disease.
Gourd Dancer
great words gourd
To Mr. gourd_dancer,
Now that you finished with your soap box, can I borrow it? I need it in order to compete in the derby with my "our gang" pals ....Alfalfa, Spanky, Buckwheat, Porky, Darla, Froggy, Butch, Woim, and Waldo... If I should win I'll treat you to the winning loving cup brimming with chocolate chip ice cream. Thank you....Wish me - "break a leg".............
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/25/2023 7:56 PM DST
it’s yours my friend. And no doubt you are slated to win. I am partial to Blue Bell ice cream; however any brand would work. In fact, a “Good Humor” bar in your honor would be the best prize! Take care my Friend.
Thanks, the "Good Humor" definitely is an honor.....
Old joke, but I gotta tell it.....
When Prince Phillip was proposing to Queen Elizabeth he said "I offer you my honor."
The Queen replied "I honor your offer."
So all during the honeymoon it was honor and offer, honor and offer, honor and offer.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/27/2023 11:40 AM DST
Dac another option is converting over to orgavix from lupron as it works immediately and when getting off test returns within 1-2 weeks. Like gourd says we have to do what’s best for us as each individual is different n science 🧬 doesn’t have the answers yet, though they’re getting close especially w chemo n now close to getting vaccines approved… At 82, whatever your doing thus far has been right on…😊😇😎
Here is a podcast that could help...PSADT it key not PSA value alone. Take a listen...
healthunlocked.com/active-s...
Also, check out this podcast as well at these Min breaks. I dont know if you had nerve sparing surgery which could mean you have benign cells remaining; youtu.be/UwvsIaGwxmU
Min 06:35; Benign margins...a new concept I had not heard of but was myself confronted with.
Min 09:50; Prostate bed MRI to determine if a 'suspicious mass' was 'left behind,' meaning again normal prostate tissue remains after the surgery.
Min 23:30; Ultrasound done to determine if prostate material was 'left behind' after surgery.
Also, this is not good news; check out this podcast for uPSA (ultra low) values...at your PSA level the probability of no progression is low...BUT is the PSA coming from cancer or from prostate cells left behind...
healthunlocked.com/active-s...
I did not flinch and got sRT (salvage radiation) at 0.13 ng/dL...but I have always wondered...what if I had waited one/ two/ three months to see if the PSA continued to rise...who knows. I choose aggressive treatment as my Decipher was thru the roof; 0.97 out o f 1.00...another thing you need to consider...what 'flavor' of PCa do you have? Gleason alone wont tell you what you need to know in order to determine now aggressive you should be in treatment...my opinion...check this out in the UCSF podcast as well...Rick
Min 09:10; Decipher score used to determine if ADT plus sRT would be the SOC...low Decipher would not require ADT plus sRT...
If you dont have a Decipher you can still get one; your tumor is stored by Law for some years...here is a good podcast on this test; its pretty solid...Rick
Update on my situation and request opinion
Update and question
What's Next?
Updating my husband's journey, hoping it helps others - any words of encouragement are welcome, but please only positive comments 
