I'm posting with the hope that some of you might have advice/experience about my husband's current status. Brief history: RP 2014 (pre-surgery PSA 11 Gleason 4 + 3). Following surgery radiation + Lupron. When PSA started climbing again, he was in Dr. Aggarwal's Androgen Annihilation trial for 1 year (Degarelix + Abiraterone + Apalutamide + Prednison). He stayed non-detectable for 1 year post trial and now, but PSA has been on the rise. The last PSMA scan found 1 small avid lesion on his pelvic bone for which he had SBRT. Monthly ultra sensitive tests show PSA has been steadily on the rise. Currently 1.88 (November .78, December .73, Jan 80, Feb .9, March .1.1, April 1.2, May 1.3, June 1.88). He is currently undergoing no treatment and is in very good health otherwise.
Here's the question: Dr. Aggarwal proposes to wait until the PSA is at 3 - 5, have another PSMA scan and then decide if more SBRT is warranted and/or ADT. He advises since number is still low (even though rising) we watch and wait. I'm very nervous about this. Although we have much confidence in him, his advice seems contrary to much I've read on this site. Any feedback and/or advise would be much appreciated. My husband dreads going back on hormone therapy, as he did not tolerate it well. Right now he feels great (exercising, eating well etc.), so I have to be the one to always be so negative, but I'm very worried that we're not doing the right thing. Thanks so much in advance
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I'm not a doctor but from what I know it looks like a good plan.. Sounds like he has a low tumor burden and PSA so no need to rush the restart of ADT although I'm guessing he'll need to at some point. Might be a good time to get genetic sequencing done to see if there are any "actionable" mutations. For example, if they find a BRCA or ATM mutation, he might be able to go on a PARP inhibitor down the road.
Thank you. He had genetic testing done early on and nothing actionable was noted. I’ll ask about it again to see if there is anything further indicated/available.
Welcome! He’s been at this one year longer than I have.Most men dislike adt! I do , but I’ve been on it 7 yrs . No pc no PSA over 6 yrs. Still, no dr says drop the adt to me.. Lupron and another tak-I’m
Still on hit me hard until an orchiectomy 2017 let me drop the Lupron shots. Now my problems are with osteo and sarcopenia.. no t hypogonadism .. im pc free Thsnk God! Personally , I would get him on adt . It could help? But I’m not a dr . .. others will advise you well.This web cite with all of the acronyms can be tmi into ally. It’s easy to overload. Soon you’ll know more and process with care .
Thank you - wow, 7 years is a long time. I’m glad you’ve had such good results. You’re correct about it being overwhelming. So many different points of view and the consequences of the wrong choices are so grave.
Thank you for being here . A good wife can save the days . True that! Who are we going to follow. I followed a naturalpathic oncologist and a APC specialist that made the correct calls for me so far . There is no one path or one fix for us all . We each accept or rejects certain things differently . Tailor your healing to your needs and likes . I say don’t follow others , make your own path . If I had listened to naysayers I would not be here today . My uro gave me 36 months max . I’m at over 7 yrs . I’m not bragging . I’m just saying that we need to do much more than the bare minimums that the docs to us . They don’t take into account diet or nutrition . I’ve done ayahuasca twice magic mushrooms a few time both with spiritual healing effects and high Thc everyday the entire time . I think pc doesn’t like high Thc . I’ve come to luv it! . I’m way off of the reservation compared to most fine fellows here .. You do you . Save him .The only thing agreed upon is that Exercise helps everything . Pc hates oxygen. You can put this down for many years . Some have for decades . It is a fight for life and quality of life . We trade off to walk the earth . You’ve got this ! Ask questions here . You’ve got this!! Ask questions here and you’ll get many answers .Thank God for our wife’s partners and care Akers . Good luck ! Scott
Hello! I think 1/3 of members are wifes . This is love . Some guys are a bit macho and don’t like to share details . It’s pretty common . Stoic . Really respect advocates for others .. Thanks ! Everyone has a strong opinion about c. Only those going through it really know how it feels . I can relate .. Please keep yourself up and strong to lead him through it! I think that I’ve aged in dog yrs these past seven ? It’s all tuff on our loved ones too! Follow a professional then add whatever natural stuff you want to it! He has to want to also . Doctors can make mistakes . Informed , you’ll get what’s best for him . A year from now you’ll give support to other newbies . Take it as it comes . Pleas3 don’t take any negative speak from anyone to heart . You have support here . Take care .. once you know more it will get better . ❤️🙏
Thank you, TA. I think the idea of delaying the ADT is to delay him ultimately becoming castrate resistant. As long as the PSMA scans show few lesions, he seems to think there is benefit to playing whack-a-mole and delay ADT. I don’t understand why he is not more concerned about the micro-metastases. It seems like that is the question to pursue.
"Thank you, TA. I think the idea of delaying the ADT is to delay him ultimately becoming castrate resistant." That doesn't work. In fact, the opposite works. Many clinical trials have proved that intensive hormone therapy delays time to castration resistance. I don't know if whack-a-mole has any survival benefit - no one knows (and if a recent trial on breast cancer is any guide, there is no benefit). But we do know for a fact that early systemic therapy delays progression and increases survival.
Were the clinical trials, that proved early HT delays time to castration resistance and increases survival, conducted in a context where diagnosis occurred by virtue of PSMA pets scans, as opposed to conventional imaging, and does that matter? Thanks.
They were based on bone scan/CT, but no, it doesn't matter. What we learned is that by systemically reducing the cancer load, it delays progression more than any effect on evolutionary pressure.
Thanks. Dr. Aggarwal is not the only oncologist taking this approach. I wonder if what was learned in the clinical trials you reference is relevant to men diagnosed later in the game and, therefore, with a higher cancer load and that men diagnosed with a PSMA, with a psa of .5 and one or two small lesions, may be better off saving the HT to reduce the cancer load when there is more load to be reduced. In the meantime, MDT is attempted.
No evidence for that. In fact, all the evidence says the opposite. STAMPEDE proved that abiraterone delays progression and increases survival regardless of the tumor load:
Other trials looking at early use of hormone therapy in other situations found the same thing.
The TROG 03.04 RADAR trial examined the duration of hormone therapy in high-risk men treated with radiation. They found that, after 10 years of follow-up, men treated with 18 months of ADT survived longer, and reached castration resistance later compared to men treated with 6 months of ADT.
The TOAD trial looked at starting ADT at the first sign of recurrence vs. waiting for metastases to be detected. Men treated earlier reached castration resistance later.
Maha Hussain reported the results of a randomized clinical trial comparing intermittent vs continuous ADT in recurrent men with metastases. She found that:
Time to castration resistance was not different for the two protocols .
Taken together, all these major randomized clinical trials show that the best way to use ADT in the oligometastatic setting is to use it early and heavily. Reducing the number of cancer cells as quickly and effectively as possible, even reducing those cells that haven't begun to measurably contribute to PSA, extends survival. The effect of evolutionary selection pressure allowing castration-resistant cells to survive is dwarfed by the reduction in sheer numbers.
Agree that bicalutamide treatment , a non steroidal androgen blocker that is not ADT, but is an alternative to it, works for many for years delaying progression and castrate resistance. Did so for me and many others for some years.
Your husband is certainly being seen by a real pro - a Genitourinary Oncology Professor and Researcher. It is route I went when first DX’d with metastatic prostate cancer in 2004. However, I can not understand why your husband would not continue with quarterly Lupron or Eligard injections after the trial. However, I am not a Doctor, much less a specialist on advanced prostate cancer.
Although my six month clinical trial called for ADT during the two year period, I continued on with ADT. In fact, Doctor Amato had to convince me to stop ADT in 2010. My fear was that PSA would rise. His solution was that it did, we would simply restart ADT and move on to some of the new silver bullets being developed.
I am a realist and came to grip that had a serious disease and Lupron held the bastard at bay. I never worried about side effects as they are easily managed. When my 2003 primary treatment failed in 2004, all the numbers reflected that I had 2-4 years; maybe five years to live. Sobering.
In 2004, my Professor and Researcher told me that regardless of which primary treatment I had in 2003 (Gleason 3+4), it was too late as micro-metastasis had already occurred before original DX.
My only suggestion is to research micro-metastasis and then discuss with your pro. BTW, I had 26 nuclear bone scans with tissue CT scans to mark and follow my disease. I have had over 120 PSA always looking at T. Today I continue with quarterly PSA and T tests, by my choice. I have been undetectable since 2005 and remain so today,
Recognize that men are all different in terms of scope of disease and and existing co-morbidity issues. However, your guy is a real pro, if he has modified managing your husband disease, ask yourself, it is because of the desire of your husband or the treatment plan of your medical oncologist?
I am 75 years of age and started the metastatic journey 18 years ago. Sure I gave up some “quality of life” factors, however, I have had a rich and disease free life in return. I wish your guy the best in treating this terrible disease. My watchword is to kill all the little bastards......
My husband had severe hot flashes and joint pain. I think the doctor is also concerned about eventual castrate resistance so he is willing to delay as long as PSA is low (even though rising).
Six years after the clinical trial, he could find no cancer in my body. Downside to stopping Lupron in 2010, if PSA rose from undetectable, then re-start Lupron injections. And any one the new silver billets developed...... I just put my faith and trust in a man who spent his career in academia and research. He held clinic, sure, but his time was spent in the Lab and Classroom otherwise.
Thank you so much gourd_dancer. It sounds like your situations are somewhat similar. It’s so encouraging to hear how well you’ve done over so many years. I’m also encouraged to hear that you’ve been able to live well after so long on Lupron. Any particular advice about managing the side effects? We know how important exercise is and we go to the gym together. Other than that and eating a clean diet, do you have other suggestions that have worked for you?
Never worried about hot flashes as they happen. I did not take any medication to alleviate. Gained a lot of weight, but didn’t worry about. I started this journey at 188. Along about 2009, I approached 300. Today I am at 227 and working on that...... through a change in diet. Last January I was 260 and had been at that weight. Cut out starches and pork. Eat meat - beef or chicken, but always with two cooked vegetables. Breakfast is two eggs and, vegetables and fruit. Black coffee .... cut out milk and milk products. Before COVID, I had a Personal Trainer. Weight dropped to 235.
2017 (PSA 51), I had RP, EBT & started Lupron for 2.5 yrs. Maintained <0.1 PSA. Went off Lupron because my wife thought I was getting too grumpy! Actually I think it was because I just didn't agree with her all of the time! Otherwise, I had mild side effects.
After 1.5 yrs. & T rose to 240, PSA rose to 0.4. Axumin Scan showed lesion, only on T-ll. Had it CyberKniffed. 3 months later PSA shot to 7.3 (T went to 330), mets. on T-4, T-8 and throughout skeleton. Went back on Lupron & added Apalutamide, Xgeva. After 1 mon. PSA 0.7, T 42. Side effects mild!
Be very cautious, would, be my advice! 20/20 hindsight may or may not indicate that I should have stayed on Lupron?
Wow - thank you for sharing your story. What an awful day that must have been when you received the 7.3 PSA result! I’m very glad to hear that the Lupron & Apalutamide has brought it back down with out many side effects. Your situation is exactly what I’m worried about so I’ll make sure he sees it. Take good care and thank you.
Yes, the day was pretty traumatic because I quickly went from an Oligometastatic diagnosis to far reaching metastasis. Granted, subsequently, I also had the better PSMA PET SCAN, which showed more of the small lesions that may have not showed up earlier but the PSA showed that there was an incredible increase, also.
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Otherwise, I had mild side effects. 
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