Good morning,
I had seen here recently some comments on anger and how ADT increases it. This is the first I've read about this, and it makes sense as I look back, I have developed anger issues.
Question, is it anger from just being in this messed up situation, ADT for a decade, and just feeling the physical decline and lately feeling sorry for myself?
Or, is it more because of the altered chemistry in our bodies?
the former
Over a year or so I wrote about anger in relation to bias against PSA testing and the unnecessary consequence of metastasis. There are over 150 replies and lots of great insights.
PSA Testing Scandal - Lost Years of Life - Updated re: QoL
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Thank you so much..gonna dig into this today
J
Your have highlighted multiple dimensions to the anger question:
1. QUALITY OF LIFE - Anger at loss of quality of life related to fatigue, intimacy, the cost of management in terms of time.
2. LIFE EXPECTANCY - Anger at receiving a diagnosis and the prospective loss of years of life.
3. CULPABILITY - Anger at the medical system and not being diagnosed before metastasis.
4. AS SIDE-EFFECT - The perception that one may be angrier "for any reason", because of the biochemical effects of cancer therapy especially ADT.
I think these are all distinct and yet interrelated.
I see your point. There are many aspects to the anger situation. Gives me something to think about. I really appreciate your response. There is great knowledge on this platform, I don't always respond or add much to the topics and discussions because most of it replied to by people that have a much greater knowledge than I . So I just read and learn.
Thank you
I think it’s a bit of both. The altered body chemistry caused by ADT that manifests as SE’s and the very understandable bouts of anger and depression about the situation in which we find ourselves combine to make for a potentially volatile stew of emotions.
I think it is a little of both but mostly ADT. Took medication to make me stop wanting to fight. Haven't been kicked out of a bar in over a year. Hahaha
I've never been one for bar fights. Over-bite and all. Dental costs now so high. 🙂
Me neither. I've started bar fights, I've witnessed bar fights, I was caught in the middle of a deli fight but never actually been in a fight. Like you, I value my chicklets.
Had one knocked out then cancer meds took the rest. "Here hold my teeth" Hahahaha
Survivor1965,
I believe that anger is the logical result of our ignorance being changed by the knowledge of our disease and learning the increased complications of its progression and the various frustration with its treatments.
We learn that our treatments are constrained not by the lack of knowledge of our caregivers. If we want more advanced care, we can find the expertise. But, our care is confined by the AMA and the various medical societies that have been designed to expand the knowledge of the disease and work towards a cure - slowly and safely or as not to upset a carefully designed structure.
But that system also provides professional legal protections against the malpractice bar who makes its living litigating cases against the doctors from whom we are seeking care. Thus, the SOC that we find ourselves confined into has two conflicting purposes. We understand the limitations, and the size of the structure that the physicians, hospitals and insurers have constructed to keep the AMA and all it members protected.
We cannot complain about this capitalistic structure because we would want to be protected by this structure if we were physicians caring for us. But, it makes us angry to know that our physicians are extremely careful about what they can offer us as treatments.
They are constantly gauging what their SOC has established, and if their employer will support their choice of treatments and if our insurers will push back refusing to pay the cost of the suggested treatment and question the physician’s selection of treatment options. So, subconsciously, our attitude towards our physicians can become suspicious and thus anger inducing. We know that it is not just us and our doctor making decisions about how we survive. There are capitalistic ghosts lurking everywhere. It is the American way of medicine.
We are told to listen to our caregivers, but increasingly, the more we learn about our disease the more we realize that they majority of us are slowly dying from a disease we’ve had growing inside us for an unknown number of years, we become frustrated. When in the disease progression we were diagnosed is usually just a fluke in time caused by the acceleration of one of the disease’s more troublesome symptoms. Then, upon diagnosis, the adventure of living with a terminal illness has begun. Of course, this will make us angry.
Now, our goal is to control our disease progression and our anger, while making our terminal illnesses as close to chronic as possible and manage the side effects of the treatments that have been agreed to be provided to us by a SOC agreed upon by our caregivers and insurers. If we do not become angry and realize the situation, I think we’d be idiots. The anger is not caused by the HT drugs. It’s caused by the reality of our situation. We are not getting out of this alive and that should piss-off anyone.
That is a really incredible response. I could never have come up with all that logic. It all makes sense though. Thank you for your insight. In the end your assessment is that the anger is mostly due to the reality of our shitty situation.
Much appreciated!
J
You are a tad too pessimistic. There are treatment trials.
Those are not for me, but good luck with that direction if you choose it.
What are your Estradiol numbers?
I try to keep mine around 20.
Estrodiol is eliminated or nearly so when on ADT. For me it took between 9 mos to 12 mos that my E2 was in single digits. I had an idea because i was getting irritable and angry.
My immediate solution was to take Kav kava root extract. Which takes about 10-15 minutes to work a boy it is wonderful.
My long term solution was to get the low dose estradiol patch but my OC didn’t want to.
So luckily for me i decided to do BAT and during my hi T phase I don’t restrict aromatase and I also limit my Orgovyx to only my low T phase.
Bottom line is get your E2 measured and then do something about getting it in the 20s
Kava kava root extract has some deleterious LT SE's
Google: Does kava make you gain weight?
Chronic, long-term consumption of kava is associated with increased adverse health effects, such as poor overall health, liver problems, stomach upset, fatigue, impotence (males), weight loss, nausea, red eyes, and low motivation.
Kava Effects, Facts and Withdrawal Symptoms - Your Room
it is anger because of all that and the fact that you cannot perform your manly duties! The frustration of a limpy winky!
I think that it is a lack of testosterone.
True and estrogen
Yes, a small amount of estrogen is converted from testosterone.
Remember also that anger is a common manifestation of clinical depression in men.
I used to get the hump.At times I could get irate!
Now.......
At times for no real reason I can become furious????
I can become crushingly frustrated!
I'm very aware that adt has changed me, I don't feel as connected to life, may be like behind not a glass screen but a perspex screen????
Brain chemistry is major.
Heroin can help with most of this.
Crack helps with some of the other stuffs
Then that other CBD stuff covers the rest.......
(Not for me though, I'll try my brain chemicals as ballaced as the adt will allow me)
From my experience there is no anger from ADT; it's probably something else. I always tended to get angry at trivial things and that's no different now. I'd suggest looking at depression and other mood disorders instead.
Yes, the situation gives you plenty to be angry about, but I think ADT is the main culprit. By lowering your testosterone and turning you into a menopausal woman it makes you prone to irrational thoughts and anger. I've observed this in my husband, long before we fully understood how it would shorten his life.
When reading about the SE's so many suffer from ADT, I am truly saddened and feel fortunate that I have not experienced those issues.
On a Friday afternoon in April 2015 my Urologist called and said that I had Very Aggressive PCa and need to have a CT and Bone Scan and when those results were in *we would meet and talk Treatment Plan.* I began researching PCa and found that ADT was generally begun early if not immediately.
After scans we met and he begins informing me about how important ADT is and the choices I had. As he was explaining I interrupted him and told him I did not want ADT drugs for chemical castration but instead I wanted an Orchiectomy and 24 hours later the BOYS WERE GONE. I believe that not having the ADT DRUGS is what freed me from episodes of anger, aggressiveness towards others, foggy thinking, depression or the feeling of not being a man.
I accepted what I had done to my body and life went on.
We have discussed it, right or wrong, cant do it
All of what you mentioned.
Hi S-1965 -I don't respond to these types of questions but defer to the more intellectual and well researched people here. However, I do have personal experience with Lupron and "altered mood".
My husband has received the Lupron injection every 6 months for over 6 years. We call it the "devil" drug. It's life saving advantages come with a price tag.
He says it feels like someone enters his mind and messes with his thoughts and thinking patterns. His aggression, spontaneous anger responses, frustration and depression all increase for a period of time. He also gets caught in what I call "loops". He'll bring up the same situation over and over again and get "stuck" in anger and frustration over that issue. And it may have happened 40 years ago! Then as weeks go by the symptoms lessen and he's basically back to his old self when he gets the next dose and it starts all over again. He tries hard to keep it in check. I spend a lot of my time with him trying to anticipate and mitigate potentially explosive situations. Including on the road. I literally cue him to "stay in his own lane" when trigger situations are happening. It's like a mantra. I also tell him to put on his rubber raincoat and let the situation roll off his back. Stress exacerbates these symptoms. Both his parents passed away last year and the stressors surrounding those events and the subsequent hosting of family and providing meals at our home and such was almost too much for him. But through the wonderful understanding and graciousness of family members and many many prayers... he made it through without killing anyone.
But we did see what stress can do! So now we avoid it as much as possible. The anticipation of an upcoming stressor is almost as bad as the event itself!
So... working out every day, being in touch with the reality of a situation, eating healthy, drinking lots of water (no alcohol), prayer and my continual love and support help him a lot. I saw where this was going and retired (mostly) 2 years ago to be near him most of the time. I finally fully accepted my role as "caregiver". Even though it's not always physical help, (and thru these 6 plus years there have been many times he's been very physically debilitated) I'm here to help him psychologically.
Here's a short Psychiatric side effects list:
Psychiatric Events
Psychiatric events have been reported in patients taking GnRH agonists, including LUPRON DEPOT-PED. Postmarketing reports with this class of drugs include symptoms of emotional lability, such as crying, irritability, impatience, anger, and aggression.
Do I ever hear you, Brbnbrn. Are you me? MrSpouse 21 and I plan around the few days after his ADT and Xgeva shots every three months and keep things simple and quiet around those times. He's been on lifelong Eligard since 2018 and had Lupron for three years from 2014-2017 with heavy duty radiation, chemo, Zytiga--the Everything Bagel of Gleason 9 PCa. Mr Spouse21 is 79, and that poison package has kept him alive and very active quite a few years past his expiration date per one of the top PCa oncologists in the world five years ago and a urologist nearly ten years ago. We're making the most of those "extra" years he didn't think he'd have.
The "anger years" were the first two when we spent our time obsessed with PCa and the treatments had immediate awful effects. With Gleason 9 in 100% of 18 cores, our research told us what we were dealing with, and it pissed us off since it seemingly came out of the blue. Anger can motivate you to action--good--but can also take away your capacity to enjoy life--bad. Eventually, Mr. Spouse 21 made decisions that were right for him, which allowed him a decent quality of life despite and, honestly, because of PCa. We started to live our lives doing most of what we did before but at, say, 60%-70%. We accepted the new normal so we weren't mad all the time.
Mr. Spouse21 and I have taken a lot of big trips, stayed involved with our families, taken advantage of our beautiful location where daily walks and bike rides are more therapeutic than any medicine. Oh, add to that quite a few motorcycle years including to and from radiation for nine weeks. During the pandemic confinement, Mr. Spouse 21 even completed a book. In between the awful ADT/Xgeva shots, we avoid thinking too much about PCa the way we did the first couple years. The pandemic, ironically, came at a time when the whole world was "staying inside" more or less. We didn't have to turn down invitations around Lupron time because there were no invitations to turn down. Nobody was travelling, so we didn't didn't feel deprived.
That said, as I type, Mr. Spouse21 is renewing his passport for a possible "big trip" (not to the great beyond but perhaps beyond what most PCa men his age would do) and is trying to finesse it between the three-month visits and the ADT+Xgeva that come with it so he doesn't go rogue on a plane and wind up in the Daily Mail! We schedule most everything a week after the ADT shots, whether it's going on a trip or going to a movie. He's a moody dude that week, so better steer clear.
At 79, my guy is dealing with a very different scenario than the way-too-many guys on here who got diagnosed at much younger ages and who are taking on these awful drugs in their fifties and sixties. All you younger men have every right to be pissed off bigtime, drugs or no drugs. You were robbed of your good health at younger ages--so hard and so unfair. I feel for you. Use your anger well to get the very best treatments out of our crazy medical systems whatever country you're in.
So thank you, Brbnbrn, for responding to a post today about anger. I related to everything you said.
That actually is encouraging. He was diagnosed in late 2017 at age 63 with a PSA of almost 1,600! 12 out of 12 cores and metastasis. Been thru all the SOC and is going Friday for his 6th and last Pluvicto treatment. PSA on 12-26=23 was 1 5! He used to get Lupron every 3 months but it was horrific so they put him on an every 6 month regime. Am I to understand Mr.21 gets Lupron/Exgeva every 3 months still? If so, maybe a 6 month regime may help with trip planning!
After he got off Jevtana and steroids in February 2023, to prepare for the Pluvicto, he went through 5 months of withdrawal. It was bad but so much better now. We're hoping that after the side effects of Pluvicto & February injection of Lupron wear down a bit we may take a driving trip south in March. 1st trip since February of 2020! Your stories of being able to be active, engaged and able to travel is very encouraging to me!
And I agree about younger men being dealt this card. Seems so unfair and hurts my heart.
Take care! And thanks for your reply!
That's a lot of treatment for your fella but worth it if it's working. Mr. Spouse had six-month ADT injections way back, but for him the side effects were worse than the three-month Eligard/Xgeva.have been This disease and treatments are so variable for each man.
Neither one of us expected to see 2024 ten years ago. On New Year's Eve this year we were sitting here at dinner kind of amazed that we've had nine of them, nine summers, and are in the tenth year after diagnosis. I'd like to add "and still going strong," but we're up there in years now and "going strong" isn't exactly true. Let's just say "still going." We'll take it. Wishing you a good long spell and Pluvicto success, Brbnbrn.
Bourbon thanks for your input it was so well explained, you can check out my response to spouse 21 further down n my bio in general. If there’s anything I can do to help people by stating my experience n success from alternative options rather than go the horrible dreaded ADT route then I’m more than happy to do so. It’s just so difficult as this disease can get into its latter stages n be difficult to kill…
Spouse21 that was such a great explanation of what really goes on. I’m58 and decided I was going to do everything I can to find a cure to this disease 🦠 so after 7 months of that dreaded horrible adt, I was going to go another route as I felt the adt was going to kill me before the cancer would. So I researched like crazy on alternative treatments to ADT n low n behold came across ivermectin n cbd oil and thus far am having wonderful results as my psa has dropped from 1.95 to .95 in less than a year after getting off ADT n starting ivermectin n cbd oil solely. So there is hope n def more appropriate n effective drugs than what they have now or choose to use…
Thanks, Nfler. Glad that's working for you two years in. (What was your Gleason score; how many cores affected--didn't see those in your profile) What's worked for MrSpouse21 for nearly ten years is choosing to follow mainstream treatments our oncologist recommends backed up by data. It gives us the mental and emotional bandwidth to enjoy our lives at the level that we can with these sucky treatments. As I mentioned, we've been able to live out a fair amount of our old "good life" though at a reduced level these last ten years with the not-too-far-outside-the box approach.
Mr.Spouse accepts that there are going to be tradeoffs and side effects to established medical treatments. Then again he was older than you when diagnosed in 2014-all cores Gleason 9 or 8. Stuff's gonna happen at age 70 that usually doesn't hit people in their fifties like you. That must be so hard. We're grateful for the nearly ten years the "standard" approach has given us. I wish you the same with your approach since you should have decades ahead of you.
Do fill out your profile a little and keep it updated so people can learn from what you're doing. It's important to compare apples to apples--level of disease at dx, ages, lifestyle, Gleason grades, initial treatments, etc.
OK very good points and I’ll do that but to answer your question 🙋 now, all 12 cores pos, initially they said 3-4, 4-3 half of each but after surgery they went with 3-5 for a Gleason 8 unfavorable at the time. The key like you said was dx at such an early age and my vitality was still at its peak only to be pulled out from under me. Had I been in my seventies I probably would’ve just gone soc or maybe not, knowing that there is probably a cure that they’re not revealing so have to try to find it myself along w many that seem to have been cured Ala Joe Tippens was the most influential. Gleason 6 or early 7 is not a big concern but more advanced n aggressive cancers are and more thought to be triggered by viruses 🦠 and with 29 years of dental back ground we knew they were hard to treat but advances were moving along rapidly hence herpes simplex 1 and 2 along with the hpv virus 🦠 which can cause female reproductive cancers. Also now maybe thought to play a big role in adv PCa and breast cancers, so antivirals played a big role in researching articles n pub med papers. Hope this helps n good luck with your treatments as there are many out there…😁
ADT makes men more susceptible to feel emotions like grief and anger re: issues that would normally not evoke those emotions. It also causes depression. For 18 months, I spent a good deal of my life in tears. I was also furious that I had been given the same punishment as the child molesters and serial rapists, and that this was the best medical science could do.
both
And our better half’s are putting up with this. I would be curious how many wives or girlfriends have said enough is enough and left or distanced themselves? Another reason to take a med vacation in my opinion. It’s not always about us.
I think as a caregiver I have a different outlook. My husband was first dx'd in 2014, had his first recurrence in 2018 and 2nd recurrence in 2023....now off all treatment due to worsening side effects and increasing PSA....and receiving palliative care. If there is a SE from ADT, he probably experienced it. We've been married 58 years so I know him better than he knows himself. I think it's marvelous that ADT in various forms works for some men battling PCa, but looking back I sincerely hope doctors/researchers don't quit searching for another avenue. I firmly believe that ADT (shots and pills for my husband) is too harsh and diminishes the patient as a whole more than it helps. I belong to another group for women caregivers and the first-hand experiences they relate suggest that chemo can also cause similar problems. Since treatment mostly deals with removing testosterone one way or another, the side effects may be expected to be debilitating as well. I never thought about or knew just how much of a role testosterone plays in a male body and was quite frankly amazed when I learned how significant that role is. Some of the SEs are more physical like developing a tic, fluid retention (that exacerbated his heart condition), fatigue, sleep disruption and having trouble standing/walking....but it seems there's always another kind of pill to help with those. Then there are the SEs that come with altered brain function like memory loss (long and/or short), zoning out, mood swings and changes in emotional functions....like anger. When the Lupron in particular started manifesting these, my husband and I both knew it was time for him to quit because once you lose your memory, you don't get it back and he didn't want to continue to that end. At the same time, his PSA began to double/triple quickly. He'd been on Lupron with bicalutamide (which didn't work) and then Lupron/Xtandi for 5 years and the MO had told us in the beginning that the ADT works until it simply doesn't, since the cancer always outsmarts the meds/treatment eventually. Some patients will embrace any/all treatment to stay alive, but I guess we were/are both more concerned about quality of life. It took 7 different kinds of doctors to dx the tic which manifests as spasms in his esophagus that made it difficult to breathe, and is still treated with a low dose anti-psychotic pill. He landed in the hospital for a 2-night stay when the fluid retention built up around his heart, also making it difficult to breathe, also adding a 2nd diuretic to his regimen. In the end he was offered bisphosphonate therapy but neither of us could understand the tradeoff for necrosis of the jaw. I wish doctors would recognize that each patient is an individual rather than a stat, and not say things like "MOST of my patients tolerate (x) very well." I also wish they'd see each patient as a whole human being, not just a man with prostate cancer, and take into account that they may have other conditions that must be considered as well, especially since ADT seems to affect so much. To finally answer your question, yes, I believe ADT does affect/cause/worsen emotions like anger in men the same way menopause and the decrease in estrogen affects the moods of women. These treatments alter each patient in many ways and these should be fully discussed prior to treatment.
Wow shamrock that was such a great explanation of what really goes on. I decided after 7 months of that dreaded horrible adt, I was going to go another route as I felt the adt was going to kill me before the cancer would. So I researched like crazy on alternative treatments to ADT n low n behold came across ivermectin n cbd oil and thus far am having wonderful results as my psa has dropped from 1.95 to .95 in less than a year after getting off ADT n starting ivermectin n cbd oil. So there is hope n def more appropriate n effective drugs than what they have now or choose to use…
hello, Flydoggy's wife here. My husband developed much more mercurial mood swings after starting ADT. It is similar I think, to what women go through with PMS and menopause. I don't know if this helps or not but my husband and I used to laugh about how he had had to put up with my PMS for all the years and now it was my turn to put up with his! The humor helped, as did the understanding of the hormonal changes brought about by the ADT. Wishing you all the best and many years of mood swings.
What makes me angry? My ex-wife,...........
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 01/01/2024 7:33 PM EST
No anger here, in fact I've become very chill. I feel very fortunate I have three great kids and three great grandkids. I didn't think I was going to last a year, but I'm lucky and have survived five+.My three year old grand daughter has juvenile arthritis, which does piss me off. Now that's unfair.
Most of the time I feel the same way Ray. It's that 3-5% of the time when something ticks me off and I go a little bonkers. I'm sorry about your granddaughter, I have one too that is 5 and I can't imagine her being sick. That truly is very unfair
S1965
I came to accept my PCa status when my urologist confirmed the biopsy results. I knew it was the first day of the rest of my life, and I put it up to the Lord,
Stay calm grab some coffee, lol . For me it's tough because everything seems to be this do or die, what happens if I can't do it anymore who will. I found quite time in prayer helped me. Yes I have my moments, but try to "keep it simple stupid" that's what I tell myself. For me that means getting rid of a lot of house clutter and unfinshed projects , etc . Change in hormone balance can effect, I take a lot of herbs and natural supps that help. Best
s1965 it’s both but def the adt predominantly. I’m the same age as you and adt was just pathetic for me, my anger was in the 10-19 percentile and I just felt it was going to kill me before the cancer ♋️ would so I decided to look for alternatives n researched like crazy only to find ivermectin n cbd oil as a possible repurposed drug. You can read my full bio but after 7 mo of ADT I had enough n just went w ivm n cbd oil mainly along w cpl other supplements and my psa went from 1.95 to .95 in less than a year. MO is just shocked that I’m off the ADT but psa is declining as times in the past psa would shoot thru the roof. He can’t endorse what I’m doing but says whatever I am doing to keep it up, it’s just a blessing to have his blessing in doing this alternative treatment… good luck n God bless and btw my qol is now the only thing through the roof…😊
Chemo Progress Update
The term 'Castration' resistant/sensitive is offensive
Choose Capivasertib or 177Lu-PSMA-617 clinical trial or stick with ADT + radiation?
dilemma ADT duration 
