I thought I had done my research and may have got it right despite my ignorance but the more I read answers here the dumber and less sure about things I feeI. DX 7/19 Gleason 7(3+4) PSA 110 at start of treatment, dropped from 156 prior to Lupron which I started 10/19 and Zytiga 11/19. Ended 44 EBRT 79Gy 3/20. CT Scan show LN involvement and Bone Scan was clean, both done in 7/19 MRI in 1/20 showed LN smaller (normal size) and an attempted LN biopsy also 1/20 was stopped because no LN could be found and the reason for the pelvic MRI. Insurance refused Pet Scans and Dr's said no point paying out of pocket because it would not change treatment. I feel fine 56 years old, no side effects that I can think of, urinary issues improved if anything, very active (Cycling , walking, running, yoga, calisthenics, weights when health club reopens and is safe) eat mostly vegetable diet but some lean protein, maybe a little too many sweets during and after rides for energy but that's about it. My Dr said I will be on meds until 10/21 and then all meds stopped and see what happens. Is that right ? Is that a vacation? Intermittent ADT? Or because it is my first round of treatment? My 2nd opinion Dr at SCCA said plan on staying on ADT the rest of my life but also never mentioned castrate resistance in the 1 hr out of pocket session. So I am a little confused as I can't change the past but want to be prepared for the future. Any insight would be appreciated.
Why does this game plan sound off ? - Advanced Prostate...
Why does this game plan sound off ?
TreeDown...You are already doing many things right....such as plant-based ,anti inflammatory diet, very good amount of physical activity and above all empowering yourself with authentic information.
I see intermittent ADT in your future ...best of luck !
You have made my point. I will pull out Pathology and reply. PSA .1 sorry meant to mention that. Hospital is not a Ctr of Excellence and nobody specializing in PCa, 2nd opinion was Ctr of Excellence and he agreed with my MO and RO treatment plan. They radiated pelvic and lower abdomen nodes. The cancer is Adenocarcinoma. Gene testing done on tumor, no BRCA and I will post that as well in next reply with Pathology report second opinion confirmed pathology.
Your doctor who wants to take you off your adjuvant hormonal meds (Zytiga and Lupron) after 2 years is right. You have to see if your therapy was curative (I assume your pelvic lymph nodes were irradiated? In that case, a PET scan would serve no purpose).
You probably consulted with a medical oncologist (MO) at SCCA rather than a radiation oncologist (RO). MOs are not experts in curative treatment with radiation. They are experts in treating men who are no longer candidates for curative treatment. That's why he gave you that biased info. I'm sorry you paid out-of-pocket for it.
This is not intermittent ADT (iADT is not adjuvant to radiation and is not done with curative intent - it's just cycling on-and-off to give those men periodic breaks)
Thank you for the clear explanation and your assumptions are correct. That statement came from my RO and yes my 2nd opinion was with a MO and now I am sorry I paid Out of Pocket for it as well because it has caused some confusion and a little anxiety. I wish I had found this forum in August 2019. However, the thing that I keep seeing is Stage 4 is not curable and I have not seen anything saying I am anything but. So is that wrong and Stage 4 can be cured but normally isn't? Or is there a chance I am not Stage 4 and the curative treatment may in fact be curative?
Stage IV encompasses several situations - T4, N1, M1 -are all thrown into "Stage IV." It is a pretty useless classification. Stick with the TNM staging, and the NCCN risk stratifications. N1M0 may be curable, M1 is not curable as far as anyone knows.
Pathology report says, Right Side Prostatic Adenocarcinoma Acinar Type Grade 2 (Gleason 3+4 about 40% pattern 4) 6 of 8 cores % involve 61% Perineural Invasion: Identified. Left Side Prostatic Adenocarcinoma Acinar Type Grade 2 (Gleason 3+4 about 30% pattern 4) 4 of 4 cores, % involve 80%, Perineural Invasion: Identified
Gene testing: Somatic PTEN Germline BRIP!Tumor Mutational Burden 41st Percentile Stable
Tree: What is your latest PSA? If it's >0.5-2.0 you could get a Ga-68 PSMA scan at UCLA for about $2800 OOP, and be better able to determine LN involvement, and whether you are M0/M1. If M1 with <3 mets, i.e., oligometastatic, it's still considered curable by treating mets directly with SBRT.
I am not a fan intermittent ADT therapy. If a drug is working why stop it unless your PSA begins to rise while still on it.
That’s what my mo tells me.
Sounds like even drs don’t always agree? You are living right. Maybe a vacation will be due to you .... ? Good luck ..
I will take what I can get I actually looked forward to just Lupron and Zytiga around day 30 of RT. Thanks
Rt grinds on us as time goes on. And it’s effects take time to recover from . I did 8 weeks imrt and towards the end and for a year later I had Chronic .fatigue. But I had some bad urology going on with tubes and a foley . I went down hard. Stay as active as possible and get plenty of oxygen in the blood . Good luck
Cure? You're barking up the wrong tree... No such thing... As Teyve sings in Fiddler on the Roof. Remission, Remission, Remission........ Don't fret you'll be around for a very very long time.... lots of rings around your tree.....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 05/01/2020 2:20 PM DST
You replies always bring a smile, when I understand them
We ‘ ve got a lot of misery and pain involved with this process . John brings the light. Your tree ain’t down yet brother. This is a test of endurance and will .. We must put our reasons for living in front of the torture of treatments . Keep your eye on recovering well and feeling better. It takes time.. It’s predict that it’s going to many years until they call “ Timber”! For you .. try to find daily happiness as a habit down this rocky road . The further from treatments the better you’ll feel.😎🌵
I hear that, Getting cancer was a transforming experience and not all bad and in many ways good, for me. Thanks for always cheerful insights.
My fave is “ if I were a rich man” dadadadadadadada ,😂
j-o-h-n I wanted you to know that as I read your comment I belted out "REMISSION,REMISSION! REMISSION!
That an unforgettable movie .. He’s a charmer .. I’ve been here for over three years. Due to j-o-h-n and few others . We joke through it all . Be well
Well it's a Tradition, Tradition....
youtube.com/watch?v=6nwj8nA...
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 05/01/2020 4:41 PM DST
There are some similarities in OUR condition, so this might help you figure a few things out.
In May of 2017, I got my Dx - G9, T3B, PSA over 300 and Node positive.
You are in a situation where the possibility of cure can still be mentioned, but certainly NOT guaranteed.
MY path was full radiation to the prostate (the max)plus regional (node) treatment at about 50% of the max.
They added ADT because my case is regional/local spread. The time allocated to ADT was supposed to be slightly more than 2 years (and perhaps permanent - unless the numbers / tests / stats suggested otherwise)
I did 16 months of Lupron. I'm on an ADT holiday, which I hope to be permanent. I've been on withdrawal for nearly 18 months, so I am back to my 'new normal'.
My 'T' is within the lower/normal ranges and my PSA is approaching 1.0.
Time will tell if I'm done with treatment, BUT I feel good now.
I'm all set for the golf season - covid or not - FORE !!!!!!!!!!!!!!!
That do see similiarities, so you were expecting 24 months but stopped at 16 ?
Golf is open in Az . Social distancing isn’t hard on the greens .
Closed here until Tuesday but using the paths for walking and cycling 5.1 miles
Feeling good is everything. Good for you RonnyBaby! Fooouurrrr! 🏌🏼♂️
Tree, never loose sight of cure. It can happen, although very, very rare. There are too many variables in scope of our disease.
I write this because in 2004 at age 57, I was T4N0M1b. And it might have been, T4N1M1b, but I don’t know for sure as I never biopsied lymph nodes. After my initial six month trial, I was able to stop Lupron in February 2010. In 2011, I started low dose testosterone therapy in an effort to bring back T. In 2016, I had my 17th nuclear bone scan and companion abdominal CT scan. I have been <0.1 PSA every quarter since. I stopped using the remission word as my research medical oncologist convinced me that the cure word was more appropriate. I have never had any of the “silver bullets” developed since 2004.
I have lost track with the eight other complete responses in the trial cohort. I just know that I am one of the patients referred to in his research papers of Robert J. Amato, D.O.
It is easy for some to cry antidotal, however, I can say with zero doubt, “I am cured.” Stay positive and never give up hope. I sincerely wish you the best.
Gourd Dancer
Thank you for responding. That is a great outcome. How was the decision to stop Lupron after only 6 months decided? Did you have other treatments or only the Lupron?
After six years. During my office visit in February 2010. The conversation went like this:
Dr A, I think that we are there. Let’s stop the Lupron injections.
Me, Dr. A won’t my PSA rise?
Dr A, I don’t think do, but we won’t know for sure unless you stop. The upside is that you are cured. The downside is that re-start Lupron. Everything to gain and nothing to lose. You will feel better with testosterone.
I have taken nothing for the treatment of PCa since.
After a year, T did not come back (I was <5.0)
In January 2011, our conversation went like this:
Dr. A, you testosterone did not recover on its own, let’s jumpstart it with low dose of testosterone.
Me, Dr. A won’t my cancer be fed by the testosterone?
Dr. A, Once again, I can’t find any cancer in your body. You are cured. However, if PSA rises, then we will stop the Androgel (4mg twice a week) and you will get an injection of Lupron.
In January 2011, our conversation went like this:
Dr A, Stop the Androgel. Let’s see if T recovered.
In April 2011, our conversation went like this:
Dr. A, Your T did not recover. Start the Androgel again.
I have been on Androgel ever since.
In November 2016, I had my last set of scans. All negative.
In 2004, I enrolled in a six month clinical trial. The trial is posted in other posts by me in this group or simply Google, Gourd Dancer metastatic prostate cancer to view other posts.
Gourd Dancer
I'm guessing that a doctor that prescribes T therapy to a prostate cancer patient (cured or not) is a rare find. Most would just go by the book and refuse. You got lucky in more ways than one. I've been off ADT for three years and my PSA seems to have stabilized but I am feeling my age (70). My T did come back but hasn't been checked in a while. I wonder if T supplementation would do me any good.
Every PSA, and I have had almost 130 of them, has T at the same time. For PCa patients, these two values are linked.
GD
I've had them both tested only when I asked for T to be tested too. Guess I need to speak up.
I have had to ask in the past and was told it's not that important. My last draw was the first time the MO added it on his own but that might be the 2nd time since DX. One was for baseline
Tree, if testosterone is not important, then why bother with a baseline? I don’t mean to be flippant, but I had a research medical oncologist explain why he does what he does in treating metastatic prostate cancer. Community oncologists may not know what to do with the numbers or are not current in various trials across the country. I will share the benefit of my knowledge gained since 2004. I do know that there is a direct correlation between the risk of death and testosterone levels achieved during ADT. Lowering the testosterone level as much as possible should be the goal and the level achieved affects patient survival.
Maybe, some simply do not want to know........... My goal from the outset of treatment was to achieve <5.0. Some medical oncologists want a <20.0; some <50.0; some do not see value in knowing. Not everyone takes to time to read past clinical trials.
IMO, another way at looking at the number, if testosterone is not dropping, then what in my treatment plan needs to be changed......... maybe the scope of disease precludes knowing T levels......
Gourd Dancer
I have learned that as well, and always was aware I need to advocate for myself. In that vein my Dr normally does what I ask and I learned the value if that early on. Currently my T is 17 but I had been off Zytiga for about 6 weeks at that time. PSA is .1 but not sure if I hit nadir yet but my next test in 5/6.
Does a biopsy of a recurrent LN will help in anything ?
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