I have been following the posts here for months, thought I was pretty well informed, but posters like Tall Allen and others are way ahead of me. I am completely confused. Here's why:
Current age 78, excellent health otherwise
Prostatectomy Jan, 2012. Other than gland (3,4) 10% one side, 5% other, T2cNO, all negative.
Jan, 2016 PSA 0.2
Jan 2017 PSA 0.3
Apr-June 2017 salvage radiation
July 2017 PSA 0.46. RO wanted to start Lupron; I declined.
Mar 2018 consult at Johns Hopkins: Leading MO there said to wait before beginning ADT. He offered that they usually don't see mets until PSA of 20 (twenty) or so.
2019 Consult at MSK, where wife being treated for MBladderC by Dr. Jonathan Rosenberg, who referred me to doc on his staff. That MO said I did "the right thing" by refusing ADT at 0.46. Said that doubling time (10 months) is "low risk."
2019 PSA continues to rise, now 2.98. Having PSMA scan Monday, Sep 9 at MSK.
So 2 docs at 2 leading institutions don't seem to be in any hurry to begin ADT, which is at odds with the many posts here, where ADT begins at much lower PSA levels.
Also have read Johns Hopkins pubs estimating outcomes based on Gleason, post-surgery time to recurrence, and doubling time. If I read these correctly, 10 and 15 year favorable survival probability.
I would appreciate any thoughts from the crowd. Many thanks in advance.
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mangeycritter
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ADT, while very effective, comes with a heavy side-effect load. Postponing it for as long as possible also postpones all those life-changing side-effects. Quality of life is just as important as overall survival time..If you wait for a year or two before starting ADT, you will enjoy that time much more without the ADT side-effects and you won't sacrifice too much survival time. You might investigate less aggressive treatments (Provenge, chemo ?) in an effort to slow down PSA doubling time as much as you can..Save the ADT for when your PSA has moved above 20 or 30..
How you view chemo vs. ADT depends a lot on what your Qol definition is. Personally, I'd rather go through a month or so of chemo and suffer those sides than go through 6 months or much longer of ADT. I did ADT for 6 months. I couldn't stand watching my muscles go away, and watching the boobs grow, have a hard time doing simple Jiu-Jitsu stuff, not to mention zero libido. But that is me and I suspect many of us would rather do ADT than chemo.
I took a shot at high dose testosterone. I inject 400 mg of cypionate a week. I started 14 months ago and my PSA is 0.043. Mayo originally gave me 3 months before very poor QoL and lots of pain. That was 2 years ago.
What I'm really doing is a kind of BAT (bipolar androgen therapy). I did ADT (via estrogen patches which have since then been studied) for 6 months, now high testosterone (>3000 ng/dl) for 14+ months. There is always a possibility that I will go low T again but that falls out from my PSA and PSADT and scans and my MO (as of last month she told me to keep doing what I'm doing because it's working and she actually talked me out of radiation. Doesn't think I need it and might not ever. She flat out told me that she doesn't see ADT in my future. When I started the T it was supposedly a "death sentence". When I started estrogen patches, four doctors told me that it wouldn't work to drop my T. On estrogen patches my T was undetectable!. I'm N of 1 but my experience tells me that SOC docs have some work to do. I could go on and on and on. I've changed so many metrics it staggers me. Almost every time I was told no by the SOC docs I've talked to.
I see this post is old. How are you doing and what did you decide on?
Thanks for your reply RSH1. After my original post I sought other opinions. Following Nalacrats, I went to Dr. Burgess at Levine Cancer in Charlotte (he's Nala's MO). His opinion was ADT plus abiraterone. Offered that resistance might occur in 2-3 yrs on ADT alone, or 4 if adding abiraterone. In March, 2020, then went to see Dr. Daniel George at Duke. He said ADT, but could wait 1 yr if I preferred. Decided to proceed, and on May 7, 2020 had Vantas implant at Levine (again per Nalacrats). April T was 486 and PSA was 6. June 30 T was 7 and PSA <0.064. Side effects not too bad so far. Being followed by local MO at FL Cancer Specialists. She originally agreed with Burgess about adding anti-androgen to ADT, but after seeing my response, backed away from adding it. Dr. George did not suggest adding anti-androgen. Somewhere there must be 2 MO's who agree on something. Incidentally, in my earlier consult with Dr. Denmeade at Hopkins, he said would not do ADT until "we have some disease to treat", by which he meant mets detectable on routine scans, not PSMA scan. Now I'm dealing with decision re continuous v intermittent ADT. If I can find the gumption, might even consider no drugs. I had PSMA at MSK---2 thoracic nodes lit up, but small, with all else negative. Again, in phone consult with NCI, doc there said I am not metastatic. Yet again, precise condition depends on whom one asks and when. Subsequent bone & CAT scans clean. This is somewhat rambling, but hope not too bad to follow. I see Dr. George in March. I know Denmeade is studying BAT, and have other reports about super T. Bottom line---still as confused as ever. Thanks again for taking the time to try to help me. mangeycritter
20 or 30 PSA is the trigger point level for ADT then? I re-start ADT Lupron depot Tomorrow. 2nd time. My PSA DT now hit 14.39 and 17.7ng/mL. Side effects yeh no the too well. But got to do this. My PSMA 68Ga results were not good.
I don’t know where you heard that waiting to start ADT so late was a good idea. I’ve been on intermittent ADT and now on estradiol instead for five years and never waited for PSA to exceed 2.5 before getting ctpet scans, starting radiation and going back on ADT, or even better, estradiol!
Food for thought. If I am 78, and reasonable health with good quality of life, how many more years do I want to have that will maintain this QoL? ADT consisting of castrate level T + anti-androgen will significantly affect your QoL and libido (if that is important to you. I personally will ride the wave until it is time to go.
Hello Cmdrdata. I wonder if you would comment after the results of my PSMA scan posted in Treatment Confusion Follow-up. Thanks.
You have to consider age, QOL, and how fast the cancer is growing (PSA doubling time). Considering these things in your situation, I would continue to ride it out as long as possible. Slow growth gives you more time to make the decision. You can always go on ADT later and it will probably be just as effective. Don't sacrifice quality of life unless it's necessary. That's what I would do in your situation.
My opinion is still the same. I'd hold off on ADT. You said you got 2 opinions at leading institutions that said to hold off with ADT. I agree with them.
It might be possible to get radiation just to those mets, I don't know. You could get an opinion from a Radiation Oncologist.
In the end though, it's really up to you if/when you want to start ADT. I would also think you could do it intermittently in your situation. You also might be able to control it with Casodex as some have discussed.
These are things you could discuss with your doctor(s). Do let us know what they say. Thanks.
Your PSA is still low, so don't be in a hurry to start ADT drugs. There are a lot of them some with side effects. So when the time comes you start with those with less side effects i.e. casodex.
I’ve been on re-start if Casodex for 3 weeks. Re-start no side effects yet. Lupron depot injection tomorrow. Got to do what I’ve got to do. More aggressive Med in order soon. PSMA 68Ga scan 8/01 showed Pelvic lymph node AVID Spots and upper lymph nodes. What do you think?
Yes, That’s my plan. Got that question for my MO tomorrow. But I’m wondering how often I get monitored for Low T and Low “0” PSA.
Saying that, My MO did mention more aggressive meds Xtandi and or Zytiga, or newer clinical drugs. But yes I’ve got to get monitored and lab tests, and then a next 68Ga-PSMA-11 PET/CT scan. ~~ 4 months out. Yes,I’m on the 68Ga-PSAM-11 Research Clinical Trials Program with IU School of Medicine, Indianapolis. Ready for action I think.
Met with doc at MSK on sep 20. He recommended intermittent lupron. Start with Firmagon, then 3 month lupron. No other drugs. He said "your disease is very small." Seems to me a pretty boilerplate recommendation. After reading here of so many horror stories about side effects, I'm wary of starting adt. (Head in the sand syndrome). Will send cd of PSMA scan to Dr. Denmeade at JH for his opinion. Would appreciate your thoughts. Thanks
Lupron is a good way to go but if you are concerned about ADT drugs you could start with casodex. The side effects are minimal. Is your doctor thinking radiation after several cycles of Lupron?
Dear Sir ,T_A Knows more than most doctors do .... lean on this knowledge and get answers from our well informed members ..
TA --He is fan of clinical studies...nothing against it ...These have the limits.
Then also big pharma distortion....
We need to integrate age old therapies...
Off label drugs, herbal treatments and Diet....
You do not need clinical studies for this....
Humans have tested these therapies since thousands of years and it is based on empirical scientific lived knowledge, free from smell of money, , though not using specialised medical terms....
Let us together work on these therapies....we do not need any clinical studies....
We the patients are basis of clinical studies....and we handle it thru sharing...
There is no one for all treatment.....cancer has to be treated thru individual targeted approach....
Granted he is the triple blind study guy.He knows much ..Not with nutrients and alt med like I am .. It is Up to us to cure ourselves any way that we feel fit . I do alt med too. Take care ..
"Patients with an increasing PSA level and with no symptomatic or clinical
evidence of cancer after definitive treatment present a therapeutic
dilemma regarding the role of ADT. Som of these patients will ultimately
die of their cancer. Timing of ADT for patients whose only evidence of
cancer is increasing PSA is influenced by PSA velocity (PSADT), patient
and physician anxiety, the short-term and long-term side effects of ADT,
and underlying comorbities of the patient. [......] The panel believes that
the benefit of early ADT is uncertain and must be balanced against the risk
of ADT side effects."
This means the experts do not know what to recommend. You should start with ADT when metastases show on a CT/bone scan. Then you have "symptomatic or clinical evidence of cancer". But the CT/bone scan will be clear in your case.
However, the PSMA PET/CT is much more sensitive and will probably show metastases. Then you are in a dilemma. Either you zap the mets with Cyberknife or start with ADT. Or do both, probably the most effective combination. You can also wait with ADT until a CT/bone scan shows the mets. Maybe you are 85 then and could live seven years without the side effects of ADT.
GP24, I would appreciate your thoughts after seeing my PSMA scan results posted in Treatment Confusion Follow-up. Thank you.
If I were in his situation, I wouldn't go looking for mets with a PSMA pet scan and then getting radiation. I don't see the need for an aggressive approach with side effects when it's probably not going to add to his overall survival. Most likely, he can manage this for the rest of life using ADT only as much as it's needed and going for the best quality of life.
Some of us are having very good results using transdermal estradiol for ADT without it affecting our QoL. Richard Wassersug (the tE2 guru) has published many articles/papers on this subject.
Sure! 17β-Estradiol (E2) is natural occurring hormone in both women and men which serves numerous bodily functions. The gel (or patch) containing E2 that some of us are using to suppress our testosterone (T) levels enters the bloodstream via the skin and avoids the first pass hepatic metabolism which increased CV events in the old (but effective) Diethylstilbestrol (DES). DES was an oral synthetic estrogen prescribed to men with PCa recurrence/metastasis for over 30 years until it was replaced by Lupron due to the many lawsuits stemming from the CV events. Transdermal E2 (tE2) has benefits similar to GnRH agonists such as Lupron; however, is not a very common PCa therapy in America at this time, probably due to its low cost and fear of lawsuits. Fewer sides effects (namely hot flashes/flushes and bone density loss) are major advantages to this therapy.
I have previously posted more information and my history on this forum.
I don't think your MO will recommend E2 therapy for the reasons that I mentioned. Most doctors are going to stick with conventional treatments and be reluctant to give their blessings to 'out of the box' protocols. Estrogen therapy for PCa is an old and proven therapy; however, most doctors today are too young and have had little experience with this form of ADT. I have done much studying on the subject since many of my family members were afflicted with PCa and did quite well on oral estrogen therapy (DES). E2 is the most potent form of the major estrogens and can delay the progression of PCa for many years. That being said, there are folks on this forum who disagree with the use of estrogens for treating advanced PCa since recent research has 'hypothesized' that higher E2 levels may be linked to increased PCa risk. This may be true prior to having primary procedures to eradicate the cancer; however, after recurrence, E2 has shown to have the opposite effect by suppressing T. To the best of my understanding, higher T levels may keep the prostate healthy; however, if a man does develop PCa, T doesn't differentiate between normal/healthy prostate cells and malignant ones and continues to feed the remaining malignant ones. I hope this explanation makes sense. This tE2 regimen appears to be working well for me and I will continue using it until/if things change.
Can’t hurt to ask Dr Nabil ADRA Med/oncologist assistant professor of oncology specializing in Prostate, bladder, upper urinary tract and Lymph node cancers. I believe he(Dr) is open minded when I consulted Aug 20th. We shall see in about 18 hours.
Well Ahk1 the consensus was, it did not go. Reasons why:
My med onc and i were seriously discussing my 68Ga-PSMA-11 PET scan 08/01/2019 results extremely detailed. My treatment method was the 'standard' Lupron inj 90 intervals, plus abiraterone only 250mg daily with Prednisone 5mg twice daily. Standard in my case for a very good reason considering my Cardiovascular history, SCA May 12,2011, I'm on my 2nd implanted ICD/pacemaker since 01/17/2019 and was a terrible persistent AFIB guy. Not so good for oral estrogen therapy (DES). But my good news is:
1. I've been on Abiraterone 250mg + Lupron for the last 11 months and my PSA went from 1.032ng/ml March 2020 to a whopping 0.75ng/mL June 8th. 2: My June 8th CT abs/chest/pelvis and NM total body bone scan CT's were both totally negative. No evidence of cancer anywhere detected.
Oh i had a five hour RF cath cardiac ablation May 6th 2020 and have been AFIB free ever since. 96 days in NSR.
Would I reconsider E2 yeh. My next visit to my MO is Sept 8th about 3 weeks out. Let's see what my PSA and T-levels are on the 8th. All options are on the table so to speak. Learn more about PCa adv treatments - Yeh. Stay tuned or better yet. I'm hoping for a 2nd 68Ga-PSMA-11 PET Scan.
Thank you Break60. Do you know how quickly tE2 works to achieve castrate T levels? I need to use some short term (2-3 months) of ADT to enhance pelvic lymph node RT.
I think it would depend on how much you use. My T level dropped by 350 points in a little over three months; however, I started using only a small amount of gel. If you applied the gel to give you about 2.5 to 3 mg of E2 per day, I believe your T level would drop very quickly.
I Used (4) .1 mg patches changed twice weekly for a month then dropped to 3 after T dropped below 7. So you’re getting .4 mg daily then .3 mg daily after a month. The twice weekly patches are small and translucent, way smaller (1 1/2x 1 inch) than the weekly patches and in my opinion easier to use and stay on. You place them under or above your navel.
What’s your T level now? Have you been on ADT? If you’re getting pelvic lymph node RT you should stay on ADT ( or the patches if you’re RO agrees) for at least 18 months starting before and during and after Radiation .
"If I read these correctly, 10 and 15 year favorable survival probability."
That would bring you to 88 - 93 year old. ADT will make you very aware of your body and your brain. So think before you leap....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/09/2019 12:51 PM DST
In many ways you are a lucky guy to have some time to find out what works. My suggestion is to experiment with things and avoid non-return actions like chemo and radiation which do permanent damage. ADT is also a trap as it will take a year to get out of your system when you stop, so that is one of the last things to try.
Others have posted some very good advice and pointers. My suggestion of what to try would be to (a) eliminate things that can aggravate cancer like sugar and junk food, or blood sugar spikes. (b) try an aggressive raw food and smoothies diet for a few weeks (if it works you can ease off a bit). (c) Test run "temporary" things like estrogen patches, and my favourite (zero side effects) of weekly 25 grams sodium ascorbate via IV, and add one of more capsules of Xtandi the night before for an extra boost in the kill rate if needed. (d) Check mineral levels and take Vit D3 5000iu a day if short of sunshine (imbalances in vital nutrients could be enough to cause your increase).
Do not measure PSA within 3 days of an IV, or you will catch the kill spike (PSA measures the kill) and think things have got worse!
Your numbers are still low enough to do the control just with diet. Don't let anybody rush you into anything. Test and experiment to see what works for you - we are all different. Good luck!
Sometimes all you need is a Bandaid. No one wants a rising PSA and that is especially true if the causative organ is no longer there. If you take the position that PCa is a systemic disease then you can understand it better. This X factor inciter can be managed very effectively...not with a shotgun but with a pee shooter. Most of the provocateurs are out of your body. You can take a mild form of ADT. You need that. I take Finasteride 5 mg per day.
There may be herbals out there like PCSpes which has been revamped and for sale online. Also POMI X10. ADT is ok but maybe not warranted at your stage of PSA or PCa. Its done for a short period and is not the B/S killer some believe it is. Its well tolerated and will suppress your PSA and cancer for many years to come. If you are hormone sensitive it can be a great Rx.
Also psychologically youll feel better when your PSA is steady. I did it for 18 months in 2005 and my PSA has been ok for 14 years. I can always add more when I want to.I still have a functioning prostate so my PSA can rise normally. Its around 3. I am your age plus 2. Suppress T and DHT and your PSA will be controlled.
Adeluca, in response to your PSMA scan result, I really can’t tell what it really meant to the doctors (I am a retired electrical engineer, not a doctor). From your report, it seemed that all were negative except for two nodes, subcarinal and hilar. These are I believe to be lymph nodes in/near the lung area, and they describe the size of it, which are somewhat enlarged. If I were to put myself in your position, I’d ask the Onc for possibly ADT consisting of Lupron+Casodex or Zytiga+prednisone (I prefer the latter). If my PSA drops after some period on this meds, they will give me several years beyond 78 and I am good with that. The above thinking is that my QoL will then be tolerable with some side effect (gynecomastia, libido, and weakness) but still able to do most everything, including bucket list trips etc. Caveat: most Oncs will follow Standard of Care (SOC), thus will not prescribe Zytiga until you are mCRPC. Only Onscs willing to do Research Protocol (RP) May be willing to prescribe it.
I agree with Cmdrdata.. adt can work .. no body wants it ,but it can extend life ..
I would hit it hard with adt and the kitchen sink if it were I.
Don’t believe this nonsense about “Mets not showing up until PSA hits 20 or higher.” It all depends on when they do a scan to go looking for it. Mine showed up with a PSA less than 2 because I had a chance MRI (followed by CT and then PET/CT with Axumin).
As for ADT, you are right to consider the age vs QOL decision. No single answer for everyone posting here. I have been on ADT almost constantly since age 57 and expect it to continue the rest of my life.
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Diagnosed almost 3 years ago
PSMA Scan and HU Altered my Treatment Plan
Median time from BCR to mets to death, without additional treatment.
