At certain times of extra stress, like awaiting a PSA test result, I have gotten into wrist-slap trouble by making awkward humor and remarks to Clinic staff. They get PO'ed and tattle to my MO. It's really not like me and the latest incident prompted me to look into ADT and emotional SE's. Bingo!
I got yelled at big time by my MO, with no consideration that my ADT is likely to be causing emotional lability exaggerated under stress. It took a while to cool down and realize it could be an ADT SE. I looked it up and here we are.
Do others here have emotional lability issues we were not warned of? I suggest sharing the link with our MedOnc staff and start to appropriately act going forward.
Knowledge is power. It always gives me a bit of a boost to educate my MO, which is rare.
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- Defendent's attorney: Judge, life imprisonment is too steep a sentence for my client!
- Judge (incredulous): But he murdered both his parents!
- Defendent's attorney: You should show more mercy - he is an orphan.
We are still responsible for our actions, even though they may be understandable. Many women experience emotional lability due to menopause, but few get thrown out of doctor's offices. Don't expect your MO to forgive you. Apologize, and get help from psychotherapy and possibly from a psychiatrist for meds. You are responsible.
I was on ADT for two years and emotional lability is real and it happens to lots of men on ADT. Look up and read about emotional lability. It is the same behavior's exhibited by brain injury patients. We say and do things completely unaware of what was being said and the consequences of those words and actions. The patient is not responsible for those actions - it is the drugs causing those actions and doctors need to be aware of this and be there to help. Not to criticize and scold. It is difficult to apologize for something one has no awareness of doing.
Personally, I find your comments offensive. If you want to be an advocate for men's health you need to do your research better and listen to and have empathy for the men actually going through what for many is the toughest time in their life. Seems to me your are reading the propaganda and BS from drug companies too much.
Any time brother! I am off the crap now. I am a advocate for men's health and I am making it my mission to educate the medical profession about the side effects of ADT which are brutal and generally unknown. The pharmaceutical industry greatly downplays these side effects and make it sound like taking aspirin or something.
My mental side effects for the first month after an injection drove my wife nuts so we would stay in different parts of the house to avoid confrontations. You are not alone.
I don't understand why it's offensive to say that in spite of emotional side effects, we remain responsible for our actions and, recognizing that it is a side effect, do something about it. I know several men who have seen a psychiatrist and have gotten psych meds to help with the emotional lability. If you are a zombie, you should be prevented from harming others and yourself while taken off those drugs. But anyone who has the wherewithal to write a post here is not a zombie.
The materials I received from my MO when starting ADT warned about the side effects such as depression, anxiety, emotional lability, etc.
I read the article you posted. It mentioned that depression, anxiety, and mild cognitive impairment (aka brain fog) are side effects of ADT. Speaking inappropriately to health care staff is not listed as a possible side effect. An apology to the staff and MO may be in order.
Read the article again. Emotional swings. Under the surface of each ADT patient is a raging storm of emotions, which can make the catch the unaware by surprise. All it takes is the wrong slip/word (as I did), vs "speaking inappropriately" in general. I was unaware of the emotional swings of ADT before the incident. Now I am aware and that they worsen as you add different forms of ADT -- eg Lupron and Abiraterone. Not every MedOnc seems to keep this in mind.
I interpret emotional swings to mean that one can go from depression/despair/etc. to a sense of wellbeing. I don't interpret emotional swings to be a license to say/behave inappropriately in a public setting.
What on earth did you say? Hahaha. I am on Duloxetine to keep that from happening. I had horrible suicidal thoughts and an attempt that friends interrupted. My biggest problem was high risk behaviors as I see no consequences to my behaviors. This manifests in driving 130+ on the freeway and fighting in bars. The medication has leveled me out. Drove high speed Monday for first time in a long time on way to my shrink. Hahaha, haven't started a fight in almost a year. The medication really does help
Evidently the combination of Lupron and a 2ng gen drug like Zytiga makes emotional lability worse. The point of my post is to highlight this SE to the community.
Apparently, no one else got thrown out by a doctor because of it. That seems to be unique to you. Perhaps you might benefit by taking responsibility for and addressing your unique reaction.
I don't know where/how anyone got the impression I have been thrown out. And I already _have_ taken responsibility. I think the hot verbal reaction was not helped by the fact that the MedOnc doctors are employed by another far bigger hospital and all the other staff work for the regional hospital in question. And not helped by the clinic being down a PA and NA in a fairly small MedOnc clinic. Thanks for your constructive thoughts.
I will say to anyone who reads this we have to closely watch what we say even in the not-so-safe space of a treatment room. Its almost like there should be a Miranda warning. Staff act friendly and pleasant enough, but do not let that fool you. And do not underestimate the way passed-along complaints tend to get distorted.
And finally, that 1-2-3 kinds of ADT have emotional SE's that worsen in combination.
We can all agree that living with PCa treatment and its SE's and QOL degradations is hard. Now I know we have to bite our lips and stifle banter and non-treatment-related comments lest we offend the friendly-acting who are easily offended.
You reminded me of one near misstep I took. Often times the onc was busy so I would be seen by a young woman assistant. She was going through a list of questions and asked about my erections. When I told her I get erections she didn't seem to believe me and so I nearly asked her if she would like me to send her a picture. Whew - stopped myself in the nick of time. 😀
Once while on ADT I almost got kicked out right after a heart attack and TIA incident when a nurse practitioner’s assistant brought in a long, complicated form I was supposed to sign on the spot. I asked what it said and she told me she didn’t know! I replied without rancor, “Well, that’s kinda f***ed up” and was immediately abandoned, with a large muscular woman I didn’t know immediately coming in in place of my NP. Stressed out, crying, and completely confused, I signed the document, wanting only to get out of there. A week or so later I received a letter from the medical establishment claiming that I had said “F*** YOU” to the assistant (not true) and that I was no longer allowed to be a patient there. It took me many months to repair the emotional damage caused by felt betrayal, and to reestablish much-needed medical care. Thought I “took responsibility” and eventually managed to establish an excellent relationship with a different MO within the same system, the stress caused by such reactivity to what I still think was a mere understandable wisecrack was by far the worse part of my cancer journey so far.
Wow, how empathetic of you Mr. Allen. Maybe you have been off this crap we take everday, too long to remember. I'm taking personal responsibilty for the brain fog and memory loss these meds are causing me so if I forgot I wrote this, please remind me..
I believe some of the comments that offend you were made by people who have never been on this ‘crap’. However I have, and I agree completely. Get help if you need it.
I'm on Zytiga/Abiraterone. I have zero T. I struggle with fatigue and I imagine I have other side effects.
I also find your implied claim that everyone on ADT will get uncontrollable emotional "lability" (apparently this means "changes a lot" 😂), which can manifest as anger, and that therefore one should have a license to be a jerk, and that drug companies are covering all this up, to beridiculous.
I've been in a lot of waiting rooms big and small, often adjacent to clinical offices. (I've also been in the "chemo theatre" for my Docetaxel sessions.)
There are a lot of people going through the cancer treatment system, typically older but not always. These waiting rooms also have visit reception and one can hear the dialogue, which sometimes concerns mistakes or scheduling issues or other frustrations.
I cannot remember a single time where anybody has been a jerk, as you describe.
People of all walks of life seem to be quite polite, on average. It's quite remarkable actually. Once in awhile one overhears some frustration. And there may even be situations where the hospital has screwed up. But again I have never heard any situation such as what you have described.
I humbly disagree with "..license to be a jerk.." The word jerk is judgmental and presumptive. (A snide person would add it takes one to know one.) The emotional SE's of ADT are not common, vary quite a bit from one patient to another, and can cause one to act in ways contrary to one's real non-medicated self.
That any one poster "never heard any situation..." as described does _not_ make it less real, but rather outside of said poster's experience radius.
Were you actually thrown out...don't see that you previously mentoned that? Any hints as to how bad what you said was? Cussing? Personal Accusations? Did your MO know you before ADT had so impacted you......if so, he /she should have recognized ADT had something to do with your altered behavior, IMHO. It seems you are doing something to deal with this..... acknowledging your behavior as inappropriate is a good start!!! I'm sure you are not the only one who has exhibited such behavior.......most others probably too embarrassed to admit to others. I think your MO SHOULD forgive you, while of course expecting that you will seek help to minimize possibility of recurrence. In fact, a top MO would suggest other professionals who might help!!
I'm not seeking such feedback but rather created this post to highlight the issue of emotional ADT SE's and the unwritten "Miranda rights" of treatment rooms and clinics regarding foot-in-mouthing the easily offended. Plenty of other commenters relate that ADT affected their moods and behavior a lot. Hopefully some readers will find relief in knowing that they are not alone in that.
When I turned up for my first Docetaxel infusion the Onc nurse said Hi, what's eating you? When I rang the bell some eight months and nine bags of chemo later, the nurses played "bad to the bone!" Love black humour, don't take life so seriously, cheers DD 😎.
Firstly well done for recognising what may have happened and taking it on the chin. A word with your MO might be an idea, to explain how this treatment is affecting you.
I think because we're all individual we probably don't all have the same reaction, particularly the extreme side. But awareness in others would help, however we suffer from an " invisible illness " so who is going to understand our emotional state.
I hope that your MO listens to your genuine concerns and offers some constructive help.
SE or not; depression in Male persons often manifests as anger and aggression more than sadness. Maybe not at all related to you, but often overlooked.
I've already made some comments here but wanted to include this link to a presentation made in British Columbia covering the side effects of ADT. It is the best and most comprehensive and unbiased summary I've seen anywhere. Maybe give a copy to your MO?
I think one guy posted on here that he had a couple of these out of character, emotional outbursts, and his wife took it in stride, saying welcome to my world. I raised two teenage girls. Well, my wife really did! What we told them was that their hormones will try to drive emotional behavior, but they have to recognize in real time what is going on and try to moderate it. When they occasionally failed, owning up and apologizing, puts the matter to bed.
Same here.
PS. My surgical outcome did not match the hype that my surgeon spouted beforehand. I really let it get to me for a while, but made the decision to just deal with it. There is a lot going on with prostate cancer treatment. It hits you where you live in so many ways. That’s what makes it hard, er, difficult. 🤣
I can spot a receptionist as well a nursing aid to the RN having emotional issues with trouble at work to personal issues at home.
I particularly see doctors at a breaking point from massive patient overload in the waiting rooms.
Many suffer depression for a life they wish they could have but are run into the ground with massive work overload and government regulations with threats of losing their medical licenses.
I’m one that this noise gets in the way of my healing going forward.
I’m currently on my 3 set of medical professionals as I’m polite and ask for my records and take them to another medical team.
I’m happy for my decisions and I move forward with my medical care.
It’s a tough world for everyone. But there’s a time to move forward with better care if staff and doctors are having personal stress that is affecting my battle.
I did some reading about E L and for the life of me I cannot imagine what you said that could cause you to be rebuked. Since you seem to be addressing it, I hope you can let it go and pay attention in the future - if possible. One option might be to mention your E L at the beginning of the visit. I have often said that my experience on ADT has made me much more understand of women in menopause. I have mentioned it to several women friends and that I am approaching 7 years of " menopause " - it sucks. They are very sympathetic. Hang in there
I have always had a quick temper, but quick to forgive. I have learned there are more important things in life and I have learned to caution those emotions, even while on ADT. It takes thought and a little training, but it can be done. (BTW, I'm an RN that gets yelled at regularly. )
Definitely have seen mood swings, irritability, crying jags. And we were informed that these were side effects. But never inappropriate behavior. We were given handouts for each treatment and med. Retired teacher here who said many, many times, “ might explain it, but doesn’t excuse it”.
I know exactly where you are coming from. After 7 years I was going crazy from Lupron. I have never regretted getting myself castrated to get rid of that drug. Ever since, regardless of the treatment, I feel more in control, more myself.
Hang in there as trying to educate doctors is a long, hard slog.
When I first started ADT I was extremely depressed and suicidal but I knew I would never pull the trigger because I had to be there for my young sons who had already lost their mother to breast cancer. The doctor had a therapist call me regularly to check on my mental state. I found her very annoying so I started messing with her saying crazy like my life is over I just want to end it all. She would try to cheer my up and I would poopoo anything positive she had to say with a negative response...Well I learned my lesson that little stunt almost got me committed...This therapist was keeping track of all my outburts...and reported back to my care team...I had to convince them that I was just being an asshole and I had no intention of killing myself...whew that was a close one....
I had intense emotional lability, but, to my recollection, I never said or did anything offensive to others. I just spent most of my waking hours in my home office, in tears, wishing I could be dead. I eventually quit ADT half-way through, and finally got on antidepressants.
I'm sorry that this post sidetracked. To me, the mental SE's of ADT is a critical topic that needs to be further researched and better communicated.
My initial SE's were primarily physical, with some increased emotional sensitivity. But, after a couple of years on Lupron/Eligard and Zytiga, I thought I was losing my mind. I would wake up in the morning so angry that I wouldn't get out of bed until I felt I could behave cordially. I developed a whole series of self checks, because I couldn't always tell whether my thoughts were rational or not. I had thoughts of harming myself and of harming others. On those days I avoided everybody. There were many days where I spent the entire day out of the house in order to avoid being an a'hole to my wife, but a couple of times I was a major jerk. I even avoided driving on the particularly bad days, because I felt like I would get into a road rage situation if another driver cut me off.
I saw counselors. I started taking Zoloft, and I continued my own meditation practice. Even so, there were many days where I wasn't sure that I would be able to control my actions due to the compelling power of my intrusive and self-destructive thoughts. If this mental state had continued I would have chosen to stop my treatment and let the cancer have me.
I struggled getting my MO and PCP to understand the severity of what I was experiencing, but eventually I got through to them. I'm now on Firmagon, and the mental SE's are less significant. They're limited pretty much to occasional anxiety and increased emotional sensitivity. I don't feel like the Ron I was before starting ADT, but I feel a lot closer to the me I knew for 65+ years.
Our house troll once called me a pencil dick. At first I was like, how did he know? Then the realization hit, we are all pencil dick's. Sometimes mine is about the size of the pencil I use to write down my score on the golf course.
Holy Moly go Slowly............... Hey Harry, look at all those parachutes dropping on us.... each of them manned by a Snowflake..........Whatgonna do when they come for you? I'm an OLD NORMAL guy who's being surrounded by the NEW NORMAL guys. Don't like it.... but my time here on this round sphere is limited....so be it....
Here's an old joke (l enjoy every time I hear it or tell it):
Man seeking employment is being interviewed by a Human Resources administrator.
Administrator asks the Job Seeker, "Is there's any bad traits that you might have?"....
Job Seeker says "Yes, I think I'm too honest"..
Administrator says "Bad trait? Honesty, I don't think that's a bad trait".
Job Seeker says "I don't give a shit, what you think".
I must tell you that, every time I say goodbye to my (any) doctor, I always end up by saying:
"Doctor, it's been a pleasure, all yours"....
So I leave you guys with "It's been a pleasure.........." well you know the rest...
I had temperamental outbursts while on ADT, and I noticed they often coincided with rising body temps during my daily hot flashes. Just being mindful of that helped me check the tendency to overreact before it happened.
Here is the letter I just sent to my Dr. My post inspired many to write, and there were numerous kernels of wisdom that affected me and inspired the letter. Thanks
Dr. xxx,
I can't apologize deeply enough for poorly advised remarks I made last week.
They are proof there is side of me that I need to work on controlling better.
If I were to be called a dweeb, nerd, dork, etc I wouldn't disagree.
I could say that being on powerful drugs with well known mental SE's is a factor, but that does not excuse things in the slightest. I could also say that non-medical personal stresses are a factor, but that excuses nothing either.
Please if you could, relay this message in whole or in part to your administrator and other affected parties.
You and your staff have been terrific treatment partners and I can't express how much that means to me. I am very lucky and grateful.
Hi, xxxx. Thank you for your note – it means a lot. You are ok, and we will move forward. All of us have to work on ourselves from time to time – I’ve had a few doozies in my own life. I will share your note with the team. When you come back, everything will be status quo. We thank you for choosing xxxxxx Hospital Cancer Center for your care!
i am on the same bus - you have to really watch what you say and do - ADT and anti-depressants (especially when your psychoactive drug nurse changes your dosages!) will put your emotions all over the board. you create relationships with your caregivers that your spouse certainly won't understand - and so many people seem overly sensitive these days. i have one no-nonsense NP that scolds me over and over - and another that should but i think is way too nice to do so. it's tough to be less than a man going through this crap.
Follow-up. After I cooled off from how the "feedback" was delivered, I wrote an apology note that was well-received. I have also realized that I have a hot-button when it comes to complaints with subjective overtones versus truly constructive feedback. In that vein I had a follow-up call with the person who delivered the feedback subjectively and she apologized for that. In life I have gotten a lot further influencing and truly communicating with people when I address behavior objectively as opposed to accusations and all the other stuff that gets recipients in a bad mood to say the least.
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Regional or metastatic? Proton + ADT +???
Current ADT Recommendation
ADT and mental issues
Irrational emotional mood swings on ADT
