ADT stop or not: So this is for my... - Advanced Prostate...

Advanced Prostate Cancer

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ADT stop or not

sandystarfish profile image
35 Replies

So this is for my husband (62)Diagnosed in 2019. Gleeson 7 (3+4) . RALP in sept 2019 & psa down to 0.05 at first check . Clear margins Rose to 0.09 in feb2020 & then 0.23 in may 2020. PSMA Pet scan showed cancer in the prostrate bed & a suspicious spot on T3. 37 sessions of the whole pelvic area accompanied with a 3 month shot of lupron. PSA is 0.04 . Oncologist actually told him he could go off Lupron at the last shot but he has decided to continue the whole 36 months . Reading the forums it seems its not advisable? . We have to decide next July if a remains well. I thought we had conquered the beast it seems not :(. Why do folk say PC is easily curable when it is apparent its not. Oh hubby is not an exercise fiend , walks everyday 5km & loves his food though curcumin is part of his regime. We are south asian & in S .east Asia . Not huge red meat eaters . Besides Lupron , he takes hypertension meds & just started statins .

35 Replies
DarkEnergy profile image

Hi, your case is similar to my diagnosis, to say advanced prostate cancer is easily curable - is not reality, so don't know where you got this nonsense.

"Why do folk say PC is easily curable when it is apparent its not."

Where and what are you reading, this is not "real" knowledge, please provide links to this information?

Our cancer is unique to our biology, like fingerprints, this is why treatments vary amongst us. I've been fighting PCa for awhile, would say, being treated by Dana-Farber, Boston MA does provide an healthcare advantage.

Nevertheless, my cancer has been manageable, others just didn't have a chance...

sandystarfish profile image
sandystarfish in reply to DarkEnergy

Oh no links but whenever i mention that my MR has PC folk say aha thats not so bad blah blah … it could be a lot worse. Well the care we are getting seems adequate so far & if it gets worse I plan to head to India where scans, generics & even new treatments are accessible easily .

DarkEnergy profile image
DarkEnergy in reply to sandystarfish

Ah, can you provide information that the Indian diagnostics results provide best actionable results?

In other words, the PCa test results are best in world and will provide 100% cancer remission?

Teacherdude72 profile image
Teacherdude72 in reply to sandystarfish

Some times when I am told that prostate cancer is a good cancer I offer to let them have it if a male and if female I suggest that they should get breast cancer because statistics are the same.

HENRYLEMON profile image
HENRYLEMON in reply to Teacherdude72

Men can suffer from breast cancer …there is no good cancer

Teacherdude72 profile image
Teacherdude72 in reply to HENRYLEMON

We are on the same page. I say that too but after they stick their foot in their mouth.

Tall_Allen profile image

It depends on whether the suspicious T3 spot was really cancer - if so, it is probably not curable; if not, it may be. Only time will tell.

sandystarfish profile image
sandystarfish in reply to Tall_Allen

Thank you ! They did Sbrt to the spot as they decided to treat it as if it was . I hoping he is cured & will be around for years. Doc on last check up said you can go off ADT if you wish & if it rises we will put you back on Lupron . We decided against & have continued . But i cant help wondering after 36 months then what? As you say time will tell …

Anomalous profile image
Anomalous in reply to sandystarfish

The longer courses seem to bring better results but there is also a school of thought that lengthy castration periods increases the incidence of castrate resistant cancer. Also, some people's testosterone has a much harder time recovering after a long period. It's a difficult decision

sandystarfish profile image
sandystarfish in reply to Anomalous

The oncologist we see is reputed to be very aggressive with cancer treatment . He had said at the outset it will be not less than 36 months. My Mr’s readings have been consistently 0.04 & this month he completes 24 mths on ADT. The side effects are not too bad excepting for excess weight around the belly but he tries to diligently walk 5kms a day & do IF. His motto is to enjoy life to the fullest so i cant curtail him much . As of now he seems to want to continue his Lupron . Lets hope if &when he comes off it there are no adverse events.

sandystarfish profile image

I never said they can but you don't need insurance companies to allow or disallow scans etc. Treatments & doctors are easily accessible . Many are trained in the west. By the way many of the top prostate cancer docs in the US are of indian origin as you might be aware. Hubby is a US citizen but the thought of dealing with the complexities of health care & not to mention the huge expenses scares me

Tall_Allen profile image

I've been very impressed by how advanced healthcare is in India. I'm particularly impressed with Tata Memorial.

Boonster profile image
Boonster in reply to Tall_Allen

What impressed you about Tata Memorial? I could find little coverage of prostate cancer. I must be missing something in my google search of Tata's departments.

Tall_Allen profile image
Tall_Allen in reply to Boonster

Doctors there who do clinical trials. Very state of the art.

Archer_15 profile image

For my hubby. He did Eliguard which has the same ingredient (leuprolide) as Lupron. He was 69 at diagnosis. In Mar 2020 PSA 43, Gleason 4+3, contained to prostate. He did IMRT radiation and was to do 24 months Eliguard. He did two 3 month shots and one 6 month and he quit. The side effects have been horrific for him. Severely lethargic, bone, joint pain, hot flashes. He is still after 1 1/2 yrs from his last shot now developed, anxiety, breast swelling and tenderness, anxiety, depression. He went from working in the yard, cutting trees down, riding his bike 20 miles a day to a shell of a man. It is sad to watch. We are not a fan of ADT and do not recommend. Others might we do not.

If we were thinking correctly when we started this process he would never have started the ADT. His father too had prostate cancer when he was 65 he did the old school radiation. Cancer returned 18 yrs later at 83 yrs. Docs had him start the ADT. We were not near him when he began the process and he just thought all his issues were normal, signs of aging. Now looking back since his passing at 89 everything wrong with him was the side effects from the Lupron.

As far as I am concerned this should not be used. Do your research and see what else it’s used for. Not only prostate cancer it is used for woman with endometriosis, young girls with severe periods, early puberty in young boys and girls and to chemically castrate sexual offenders (in some states they have deemed it inhumane for sexual offenders so they have stopped using it…..let that one sink in). I follow a page on Facebook called Lupron Victims (The Original) join this group and I think anyones eyes will be opened. Mostly woman but there are many men on there as well. But when you read about thieve people from all over the world and the long term damage it has done people may rethink ever taking it.

This again is my feelings and opinion based on my own research from actual people who have suffered.

I am off my soap box now.

Good luck to your hubby.

sandystarfish profile image
sandystarfish in reply to Archer_15

Thank you for your reply. I wish good health for both pf you . Unfortunately hubby is already on Lupron & the side effects have been manageable as i mentioned. He believes his positive attitude is helping him beat his condition . I can be quite a negative nanny who needs to research all.

Archer_15 profile image
Archer_15 in reply to sandystarfish

I am very happy for your hubby his has been manageable. I wished my hubbys were. Everyone is different is what I have learned. Hubby is the optimist for sure and a great attitude, exercises…..we’ve tried everything. It has turned from I can beat this cancer to, I will do anything I can do to manage these symptoms. The docs were no help on the side effects or even suggesting switching to a different brand or an alternative. I like you research as well.

Good luck to you both.

Magnus1964 profile image

Prostate cancer is not generally curable. The best we can hope for is to put it in remission long enough to die of something else.

It sounds like your husband is doing well. My suggestion is, Don't put a time limit on Lupron or any other drug. Is something is working, stay with it. If the drug eventually fails, some on to something else.

Your diet sounds good Little or no meat. Stay away from poultry, too many growth hormones. Fish is preferred.

London441 profile image

That is a sad story, and I’m sure there are many others who’ve experienced similar outcomes. I feel badly for you and your husband, but I feel obliged to offer a different view, also based on my experience and that of others.

Lupron is hard on the body without question. If it were not proven to assist radiation to do its job I would not have taken it when I did (early).

Men are still given RP and/or radiation and sent on their way with the assumption of a cure all the time. RP especially. Unfortunately, cure/long remission rates from RP or radiation alone have never been good for Pca that has escaped the prostate even microscopically. PSMA and other sensitive scans are changing that landscape, but slowly. At least now doctors can see the specific location of the cancer before the cutting, burning and poisoning commence.

I also had RP in 2019, before the sensitive scans were more available. As you may know, at that time surgeons were simply left to see the pathology report and decide whether to advise when or if to have additional treatment or not. RO’s would just wait and see. Let the PSA rise to a point then start ADT.

So If PSA is rising after radiation ADT begins, if it hasn’t already. If it rises after surgery, radiation is the last stop before systemic therapy. If it doesn’t work, metastasis directed (spot) radiation, chemotherapy and other anti androgens are tried. Perhaps immunotherapy. All provide varying amounts of reprieve but all eventually fail.

Metastasis and death follow if the patient lives long enough. Usually they don’t. Most die from heart disease or other co morbidities. Most had one or more underlying health issues at diagnosis. For instance, I have little doubt long term ADT lethally exacerbates heart disease in many men.

The problem with avoiding ADT is that if the disease gets a strong foothold later one must choose to allow it to take over or go on ADT anyway. Many guys who refuse it early wind up on it later.

Cure/lifelong remission is the goal of initial treatment if at all possible. ADT can play an important role.

My decision was to hit the disease as hard as possible early, including ADT, for 18 months. I had no problem with ADT side effects, which happens for a small percentage of men by luck, and for a much larger number because of dedicated strength training.

Weight lifting is essential for fighting the muscle wasting ADT induced. It should be EMPHATICALLY advocated by doctors prescribing ADT, but instead is often only casually mentioned or not at all.

Admittedly it’s hard work and not for everybody, but it’s incredibly effective for minimizing or eliminating every side effect from Lupron.

Consistent cardiovascular exercise and caloric restriction are also necessary on Lupron, which are also too much of a challenge for some.

In summary, after much research, I took the path of optimizing the radiation with ADT in exchange for no libido and a small amount of strength loss and fat gain for 18 months. My relatively young age (63) and superior physical condition were favorable, which made my decision a lot easier.

I don’t claim it will produce the desired result, even though I am without evidence of disease to this point. I do know my quality of life is dramatically better for it. All in all it was a sacrifice I was more than willing to make.

sandystarfish profile image
sandystarfish in reply to London441

Thank you for your reply. I workout everyday and combine cardio & strength training. I really need to get him on the bandwagon. I wish oncologists would advice this. Perhaps i can prevail on a GP friend to do the needful..for men never listen to their worrywart wives . I really need him to be around for longer .

Horse12888 profile image

36 months ADT is not superior to 18 months, so there is no reason to do 36 months even if there are no perceptible SEs (which is extremely rare).

London441 profile image

You’re welcome. My reply was actually prompted by Archer_15’s comment, but of course you are the original poster. I sometimes feel I have to defend the indefensible (Lupron) but we all know it is nasty stuff. Nasty stuff with a purpose though.

It is SO easy to give in to the fatigue when it comes to weight training on Lupron. This we must fight with all our might. Simple walking or even bicycling is not sufficient, great though they are.

I like that you encourage him. You can lead a horse to water but blah blah. I never stop trying. Don’t you either! I always say dedicate yourself to it for a month and you will never go back. Great luck to you both!

Archer_15 profile image
Archer_15 in reply to London441

Hubby does his exercise. Yes, he walks, cycles. No he does not weight train in a gym, but his weight training is lifting cut logs from cutting trees in our property. He pushes through all the pain and will work circles around anyone half his age. He has that drive. He was hoping after stopping the ADT his side effects would subside. They have not. They are worse and new ones popped up Over a year later. Docs have no explanation. Unfortunately docs did not encourage any exercise. We’ve learned this from our own research.

As I stated ADT effects everyone differently……and I am beyond happy for anyone it helps.

London441 profile image
London441 in reply to Archer_15

I’m sorry that he seems to be on the far (bad) end of the spectrum. What is his testosterone?

Archer_15 profile image
Archer_15 in reply to London441

His testosterone when he was on ADT at the lowest was 12. I believe the last test was 227

London441 profile image
London441 in reply to Archer_15

227 is low, as I’m sure you know. Do you know what his baseline T was at diagnosis? Few know because few doctors order it then, although they should.

If his PSA is low you may want to consider supplemental testosterone. It’s a bit controversial, but there are plenty of good docs who will prescribe it, provided a close watch is kept on PSA.

It is a way to find out if his joint pain etc are being caused by low T.

Archer_15 profile image
Archer_15 in reply to London441

We do not know what his beginning baseline was. You are correct doc never ordered it. We didn’t know to ask. It has been slowly rising. We will be having it checked again October I think. We switched docs a year ago. The first one was a recommend from primary care and we should’ve got a second opinion and switched. We asked new doc about testosterone supplement and or estrogen blockers and he said not yet. He wants to keep an eye on his PSA. His PSA has not risen since the big drop at the beginning of ADT in June of 2020. He is still .03

London441 profile image
London441 in reply to Archer_15

Yes it’s basically criminal that doctors don’t test baseline testosterone. Finding quality care is tough good for you staying after it.

See what they say as time goes by, but keep advocating. The T may continue to rise on its own, but there is also HCG and other tricks good urologists know. Great luck to you!

SteveTheJ profile image

Stop ADT only on the advice of your oncologist; if that person says yes, get a second opinion.

j-o-h-n profile image

Greetings SSF,

Would you please be kind enough to tell us your bio. Age? Location? When Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you should post your response in the bio section on your home page for your use and for other members’ reference.

Note: Answers are for your benefit, not mine.


Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/01/2022 12:15 PM DST

sandystarfish profile image
sandystarfish in reply to j-o-h-n

Age when diagnosed 59 now 62. Location Expat in Malaysia . Gleason 7 (3+4) psa at RAlP 5.2. Da vinci surgery done Sept 2019 in malaysia. Post-surgery psa nov 2019 0.05. Feb 2020 0.09. Psa 0.23 in May 2020. We waited a month it rose to 0,4 & went for the PSMA Pet Scan. Identified activity on the prostate bed & a suspicious spot on t4 not t3 as i mentioned earlier. Urologist surgeon sent reports to h Declan Murphy of Peter Maccalum Cancer Center in Melbourne & I sent the report to centers in India & all docs were of the opinion it was ogliometastatic & should be treated with radiation & ADT for at least 18 months. First Lupron shot was in July 2020 & 37 radiation sessions including 3 SBRT shots to the bone met over Aug-sept 2020. Post radiation PSA 0.1 which fell to 0.05 & then stable so far at 0.04. Next Lupron shot is later this month.

sandystarfish profile image
sandystarfish in reply to j-o-h-n

Forgot to add after RALP all margins were clear & it was contained within the prostate . The surgeon was very shocked at the PSA rise & outcome . But here we are ..,

j-o-h-n profile image
j-o-h-n in reply to sandystarfish

Well thank you for your quick and detailed response. It would be a good idea to copy and paste it in the bio section in your home page for your use and for members use in the future. I'm fairly sure we have other members living in Malaysia who you might want to contact. Take care and live every day...... and don't forget to laugh.....Keep posting....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/01/2022 1:15 PM DST

john4803 profile image

Diagnosed 2017 PSA 51.

I had RALP 2018. FINAL PATHOLOGY (Stage IV pT3, pN1) T3b, GS 9, 70G, Pc 40%

Started Lupron for 2.5 yrs. Maintained <0.1 PSA w/very little side effects.

2018 IMRT/IGRT 25@45Gys), 37@66Gys)

After 2.5 yrs. went off Lupron, PSA <0.1.

After 1.5 yrs. (2021) PSA rose to 0.4. Axumin Scan showed lesion, only on T-ll.

Diagnosed Oligometastatic, Had it CyberKniffed.

3 mons. later PSA shot to 7.3, mets through out skeleton.

Went back on Lupron & added Apalutamide & Xgeva.

After 1 mon. PSA 0.7, T 42. 2nd mon. PSA down to 0.3, T43.

Next visit 7/20/22.

I wish I had never gone off Lupron but I am a GS9.

jazj profile image

Long-term ADT (> 12 months) is in my opinion "Old School" Standard Of Care thinking. Oncologists love ADT because they know for certain it will reliably put the cancer at bay (until it becomes castration-resistant.)

If I were you I would only be dealing with an Oncologist that is knowledgeable about such things as BAT, Intermittent ADT, Advodart, etc. My personal opinion is that anyone recommending more than 18 months ADT at this time is probably not "up to speed."

ADT poses a significant negative effect on quality of life - to what end? Does it cure cancer? No. Does it make you live significantly longer in the end - depends on each individual's circumstances in my opinion. Couple examples:

Regarding intermittent ADT:

"Looking more in-depth at several trials here, this is the RTOG 9910 trial published in the Journal of Clinical Oncology in 2015. This was a phase three randomized trial targeting men with intermediate-risk prostate cancer, which was 1,579 men. And they looked specifically at comparing four months versus nine months of ADT. On the left, you can see disease survival. The Kaplan-Meier curve on the right is an overall survival Kaplan-Meier curve. And essentially there was no difference in the curves when comparing four months versus nine months of ADT. So, this concluded that based on this comparison of length of ADT, there was no difference in disease-specific survival or overall survival."

I'd personally try to minimize ADT to strike a balance between significant effect on long-term outcome and quality of life in the meantime. In general the farther out the studies look, the less of a benefit (if any) long-term versus short-term ADT has. Is the difference between 70% and 62% worth the longer term side effects along the way? A very personal decision.

"In the overall cohort, the 10-year biochemical DFS rate was 70.2% with long-term ADT and 62.3% with short-term ADT (hazard ratio [HR], 0.84; 95% CI, 0.50–1.43; P =.52). For the high-risk patients, the DFS rates were 67.2% and 53.7%, respectively (HR, 0.90; 95% CI, 0.49–1.64; P =.73). For intermediate-risk patients, the DFS rates were 73.5% and 72.6%, respectively (HR, 0.72; 95% CI, 0.26–2.06; P =.54)."

There's something also called TXA2 that is crucial in the metastasis of prostate cancer. It's why some PCa patients take baby aspirin. Guess what ADT does? It raises TXA2. But that's probably getting overly technical and the significance for long-term outcomes I don't believe has been determined.

I think what I'm trying to say is ADT isn't a silver bullet so weigh the negative hit on your quality of life heavily when deciding on how long and/or how often to do it.

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