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Patients and partners lack knowledge of androgen deprivation therapy side effects

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Posted 8/23/2012 2:33 PM (GMT 0)
Patients and partners lack knowledge of androgen deprivation therapy side effects

ABSTRACT

Objective

Androgen deprivation therapy (ADT) is the primary treatment for advanced prostate cancer (CaP). There is growing evidence that ADT negatively affects men's psychosocial well-being (e.g., causing sexual dysfunction, bodily feminization) and physical health (e.g., increasing the risk of osteoporosis and metabolic syndrome). Although strategies for managing the majority of side effects exist, it is not clear that patients are benefiting from this knowledge.
Methods

Seventy-nine newly prescribed ADT patients and 54 of their partners were given a checklist of various common and uncommon ADT side effects. They were asked to indicate the drug side effects that they had heard of or anticipated.
Results

Both patients and their partners were poorly informed about the side effects of luteinizing hormone-releasing hormone (LHRH) agonists used for ADT. More than 70% did not know that anemia, memory problems, loss of body hair, and depression can occur following treatment. Over 50% were unaware of significant potential side effects such as reduced muscle mass, osteoporosis, increased fracture risk, weight gain, genital shrinkage, and gynecomastia. Concurrently, more than 20% mistakenly anticipated dizziness and itching.
Conclusion

The lack of awareness of ADT side effects may partially explain why ADT currently results in significant decreases in the quality of life of patients and their partners. Patients uninformed about side effects do not engage in behaviors to prevent or reduce the risk of adverse effects. Improved efforts to educate patients about treatment side effects and coping strategies may result in improved psychosocial and physical health for CaP patients undergoing ADT.

http://www.urologiconcology.org/article/S1078-1439%2811%2900475-3/abstract
Posted 8/23/2012 2:48 PM (GMT 0)
Thanks for posting this. Love seeing evidences from the other side of this matter. My oncologist, who does not believe in early HT intervention in most cases, has told me many times, that HT can put the body through a lot of physical stress and damage. With all the side effects and damage that has done to my body in the name of cancer treatments, he is reluctent to put me on HT, knowing that there might be little to gain, but a lot to pile on me in terms of QOL issues. It's definitely a trade off each patient has to weigh in before making a long term HT commitment.

There's always two sides to a story, and at least this points toward the negative side, not just the positive.

david in sc
Posted 8/23/2012 2:57 PM (GMT 0)
There's always two sides to a story, and at least this points toward the negative side, not just the positive.

i don't think the negative side of chemical castration has been kept secret, David.  the information has always been here but so has the hysteria usually from guys who have never been on the stuff.

ed

 

Posted 8/23/2012 3:22 PM (GMT 0)
Ed,

I'll agree that there is a lot of fear of the SEs (I won't say hysteria, as my uro has warned me clearly that my life will change significantly). I am clearly not happy to have to go down that road.

The information is there if you dig for it, but as a patient, the uro should be providing that. We have enough on our plates without having to scour the internet and sort out the junk from reality.

The big issue for me in talking to those on HT is that they have a public story and a private story. The guys who rally around and say "yeah, you'll survive! we're doing OK" with a slap on the back when I bring it up are also the ones who call or catch me one-on-one and warn me that they are keeping up a front - alpha male and all that. They almost to the last one then describe what they really went through as much worse than what they admit in group settings..

Now, there is a psychological part. A lot of these guys have wives, kids, grandkids, and have a mind set that they are doing what they need to do in order to dance at the weddings in the future. The trade-off is something they can look at and balance. It gives them a reason to put up with the crap.

Since I have none of the above, I get to look at the downside compared to a completely empty upside. Sure, I need to get a couple of more books finished, but there will always be another one, so the flow will stop someday. Yes, someone may come along. But for now my life is to keep a job so I have insurance to pay the medical bills, convert plastic boxes of notes into books, and try to help keep the peace here.

Posted 8/23/2012 3:33 PM (GMT 0)
Ed, it's not as simple as you put it, "hysteria from guys not on it". Both my urologist and my oncologist, have pointed out to me, that many doctors underplay the seriousness of HT side effects and QOL issues. HT is big money too to doctors. I have never been bitten by a rattlesnake, but I don't feel I have to experience it first hand to know that it would hurt, and it would suck to get bitten.

I also believe, as 142 has suggested, that with some men (and definitely not targeting or even thinking about you, think of this as a generic statement, not a personal one), that the macho thing does play into their remarks about HT. Most men want to portray themselves as "tough guys" that can take anything. I would think that is a very normal response to a lot of medical treatments.

I use to think I was too, prior to all my catheter troubles, painful stricture issues, and now living with severe chronic pain for two plus years. Give a guy enough pain, for a long enough period of time, and it will re-make how one thinks about their personal "toughness".

This article is not anti-HT, I think its important that the fullness of knowing the risks and side effects be fully known to the potential patient. It shouldn't just be up to the patient to dig out the truth, I feel its the doctor's duty to be upfront to the patient. Despite what some think I think, I am not 100% opposed to HT even for myself. If my situation warrants it, my oncologist would not hesitate to reccomend it, he is not opposed to HT either, he's just not into early HT intervention in most cases.

david
Posted 8/23/2012 3:35 PM (GMT 0)
142 -- the thing about HT is if you don't like it you can stop, and i can only think of one case where that's happened and the guy really just started his HT holiday a little early.

and if you test drive HT and you absolutely can't continue you can stop and your disease has usually either marked time or is pushed back so there is no penalty other than the SEs you experienced while on the drug (s).

when it comes to any treatment i think you are better off listening to people who have experience rather than those who have created their own scenario.

ed

Posted 8/23/2012 3:35 PM (GMT 0)
David and 142 -- no offense but you guys make my point for me, and that's all i am saying on the subject.

ed

 

Posted 8/23/2012 3:42 PM (GMT 0)
Ed,

"i think you are better off listening to people who have experience rather than those who have created their own scenario."

 

That is exactly what I am doing - talking to the doctors and to my many friends in various support groups who are on HT or were on it before they went refractory. (I will say none are doing intermittent). They all have the same story for me - "you'll live, but you won't like it".

That is not hysteria. It is a hard cold report from those doing the treatments.

Posted 8/23/2012 4:05 PM (GMT 0)
The effects of HT vary quite differently among patients in its degree of severity. Older men seem to handle HT better than younger patients. For me it was very tolorable, but it also was for only 9 months. I'm close to two individuals that have been on HT for a long time, one 11 years of intermitant and the other 15 years of continuious. neither seem to have any major issues with dealing with the SEs.
Posted 8/23/2012 4:09 PM (GMT 0)
Ed,

Hearing this directly from doctors that are experienced in administering HT, and treating patients that they put on HT, do me, is a good as direct experience. Many of us have found here even here at HW, that there are Radiation Oncologist that either went into denial about RT side effects, long and short term, in order to push patients into SRT. Not meant to be apples to apples, but similar in the logic.

david
Posted 8/23/2012 4:14 PM (GMT 0)
JohnT,

I don't doubt a word you are saying. Like any treatment, I am sure how people are effected vary from both ends of the spectrum, from "no real problem" to severe "QOL issues". And perhaps for the bulk, somewhere right in the middle. Still comes down to personal views on QOL vs quantity of life, and each patient alone has to make such decisions in their own life.

david

p.s. before i forget it, my oncologist has told me that he has seen "many" patients where HT had severe side effects. He didn't quantify "many", so I don't know if he's talking about 10 men or a thousand men
Posted 8/23/2012 4:26 PM (GMT 0)
I am now on continous HT, but was on intermittant for several years. Considering the alternatives I find  the SE are tolerable.....my QOL is still very good. Daily exercise,yoga, and a good diet will mitigate many of the SEs and are good for your overall health......some days I have to really push to get going, but once I finish working out I am energized and many of my body aches are gone. My libido manged to  survive surgery and SRT, but the hormone therapy finally did that in !! I am very lucky my partner and I are much closer than ever...she says she wants me alive rather than sex, which relieves my anxiety.My body has lost most of the hair...too  bad I don't  have the muscle tone or I could oil up and cruise the beach !!!!  While  I wished none of this had happened.....life is still very good.
Posted 8/23/2012 4:30 PM (GMT 0)
ziggy,

sounds like you are doing all the right things to help yourself in your situation, i feel that is a very important factor. also, having a fully supportive partner makes a huge difference, when one is fighting a serious cancer or medical situation. i have no complaints in that department either. my wife and family have been there 100% for me from day one. hope you continue to hold your own and do so well.

david
Posted 8/23/2012 4:31 PM (GMT 0)
John,

You are correct on the age impact at least as far as I have seen. I had not considered it. Since I am 59, I tend to talk about it with guys in the 55-65 bracket.

Ed,

My uro has been a practicing uro/surgeon since the late 1980's, and has a lot of experience following patients on HT. He believes that I will have a bad time with it, and was hoping that we could go straight to chemo. Suffer more, but a shorter period.
Posted 8/23/2012 6:12 PM (GMT 0)
All of my knowledge in of androgen deprivation therapy side effects came from this forum and was I pretty darn pissed when I did obtain that knowledge. My URO recommended that I do 2-3 years of the stuff just to be on the safe side, but my Brachy ONC suggested that 12 months should do the trick as part of my over all treatment. Early in my HT I was pretty messed up and asked that I be taken off the stuff. My local ONC said sure if it's too much then stop, but it was my Brachy medical contact that convincd me to stay on for the 12 months. It's been 3 months since I've been off the stuff and I'm not quite back to normal yet, if there is such a thing anymore.

Bottom line.....I totally agree!



Posted 8/23/2012 11:05 PM (GMT 0)
In my experience, doctors do play down side effects (or more accurately, virtually don't mention them at all). What I know about side effects I've learned from this forum and the books I've read, sites I've visited.

On the positive, I imagine they do that because you might be more inclined to notice symptoms if you're looking for them. And hard as this is to believe as something I would say (I have never been one to "let the mystery be"), optimism may be at least an advanced cancer patient's best friend, and a little ignorance might be helpful to that optimism. When we first got this diagnosis, I was reading up on PCa like mad, and using those risk/survival rate calculators you find online, etc. And I was very very sad. Soon thereafter we had a previously-planned vacation, and decided to make it a vacation from PCa. And it helped immeasurably to stop learning about this darn disease and what my husband's numbers could predict. I still believe we need to know stuff to make sound decisions, but I don't know, maybe they didn't tell my husband he'd have side effects because HT was his only hope, and foregoing HT would have some nasty side effects too.

So I cut the doctors some slack. On the other hand, more info about how to manage the SEs would have been (would still be) helpful. And I did find it bizarre that sexual function was never once raised. I guess they just assume we know it means sex is over, but since stuff I've read on this forum suggests that if we took some actions now, we'd preserve at least a chance of restored function, should we ever take a break from HT.
Posted 8/23/2012 11:17 PM (GMT 0)
Hi guys....I'm 46 years old with advanced desease found approx 2 years ago.The only option offered to me in he uk was ADt and I've done close on two years of it.I now believe that ADt has much greater adverse affects on younger men with higher starting testosterone levels.if we look at this practically it is plain obvious !!!! The more testosterone you deplete from a mans body then the more side effects he is likely to encounter.At 44 years old I was very physical training 3 hours most days at high Intensity,and sexually very active.I was full of life and very happy go lucky despite running my own company which had done badly throughout the ressesion.........two years of zoldex ......I'm now a different man.!!!!!......hot flushes,loss of libido,erectile disfuction,penile shortening,loss of muscle mass,fat gain around chest and waist,depression to the point of suicidal thoughts several times,daily tiredness,mood swings,emotional to the point of tears,strange sensation where my teeth and lips feel constantly dry,continual mucus that seems to come from my throat,tired eyes constantly and least but by no means last the dreaded brain fog that makes you feel really dizzy and can strike at any time.I was so sick of how I felt that I took 3 months holiday from the shots but felt no better and on my oncologists recomendation returned to the injections.Right now I'm back OFF of the ADt and I've no intention of taking it again.Quality of life was topic of conversation when I was first administered zoladex.Zoladex robbed every last bit of quality of life I had and I think it is a treatment too far for young men.Maybe for older guys where there body's are preparing for less testosterone then it is bare able but for me it has destroyed the man I was.I'm off of the poison now and I'm adding a first hand experience to this thread so that anyone looking in can see what it can potentially do to a man.In conclusion I would given the chance I would never of taken this medicine as in my opinion it is lethal.I appologise to anyone who feels offended by my comments but I am just being completely honest as to what it as done to me.
Regards Lee...
Posted 8/24/2012 12:54 AM (GMT 0)
Lee,

I understand how you are feeling. My husband has been on HT since Feb 2012 and is getting ready for his 3rd injection in Sept.
We have been told by guys in our local support group it usually starts to worsen(the SE) after this next injection.
We are planning on doing 12- 13 monthes on and then off until or unless the PSA starts rising.
Not sounding pessmistic but do you have any idea what you will do if your PSA starts to rise again? Hoping for the best for us all.

BOOGEE
Posted 8/24/2012 1:30 AM (GMT 0)
I dont know...my take on it is that HT has put me in remission for now...and has shrank my tumor below half the size and Im able to urinate freely again. Not to mention I went from a 94 to .16 PSA. so does it stop the pain...yes, it did for me.

I used to have sharp pain when urinating but that has left me completely.  

I can honestly say the only side effects so far is a little weight gain and lack of a strong sex drive. Im still able to have good sex though with levitra but the urge is just not there. I know its not healthy for men not to have testosterone but I guess theres NO cancer treatment thats all peaches and cream...Ive seen my sister go through chemo and I can tell you no way do I want to do that....at least not until absolutely necessary.

Oh and also I lost much of my leg and arm hair as well as some thinner eyebrows but have not had hot flashes or aches and pains like some get. I do feel fatigue about 1 day a week for some reason but thats minor.

Posted 8/24/2012 2:56 AM (GMT 0)
I did 12 months of ADT3 when I was 58 and it was no walk in the park, but I have been off HT for 14 months now and in remission with T recovering and I can say the the 12 months of HT was well worth it for me. I hope very  much to hold off this beast until a cure is found, or a better way to treat it.  I guess that I would trade QOL today for the hope of a much longer life.
Posted 8/24/2012 3:26 AM (GMT 0)
Doctors also don't talk about the SE's of death from advanced PC. I hear tell it is a bummer.

I've heard guys on here say if they knew that their sex life would have been changed like it was, they never would have had surgery, even tho it probably saved their life.

Honestly, sometimes we just have to suck it up and take the bad with the good. There are guys here with a deathly fear of HT, so they suffer the consequences of letting their cancer advance by not starting it.

What are we thinking? When we are dead, we won't feel anything.

Nobody ever said fighting this sucker was a walk in the park.

Goodlife
Posted 8/24/2012 3:55 AM (GMT 0)
Goodlife,

Yup, Dead Men Don't Have Sex. Wet or dry.

This goes back to the discussion that you make the decision based on what you want to accomplish. If you think first.

I haven't said I won't do HT, I would just have rather had the opportunity to try chemo first. My choices are limited, and by the time I see you in Rochester, the die will be cast and I will be in whatever state I'll be in. New York, if I'm not mistaken  smilewinkgrin .

Posted 8/28/2012 7:02 AM (GMT 0)
Hi Boogee ,I'm trying to pet my doc to prescribe estradiol patches as I believe they have much fewer side effects and can achieve the same effect as zoladex,lupin Ect...However it is not standard practise here in he uk.Seems the format for advanced pc is as follows......ADt 1,ADt 2,cosadex withdrawal,then chemo,and if there's anything left of you they might prescribe abireterone.Seems stupid to me that they only give the most effective drug abireterone when your at deaths door here in the uk.I suppose it's a financial thing.I'm sick of suggesting treatment ideas to my oncologist only to be told that's not available to you at the moment.
Posted 8/28/2012 1:18 PM (GMT 0)
BB_Fan,

Happy to see your numbers are still good.  Our tracks are very similar. I had my last Lupron shot in early March in the middle of SRT;  follow up PSA and testostorone tests in July both came back "undetectable."   Still getting hot flashes several times a day, still do not like hot weather and I have always thrived in the heat (used to live in the Caribbean), so it appears the HT effects are still not out of my system.  Next round of tests at the end of December.  What I want to see of course is a rising testostorone level and PSA still undetectable at that time.  You are my model for success.  Like you, I also see this as a delaying action until hopefully something better comes along.  For those contemplating HT, I would say that hormones are no walk in the park, nor are they horrible.  My wife had chemo for breat cancer nine years ago (we celebrated her 68th birthday this past weekend!), and I would say from what I could see that chemo is a much tougher road than HT.  None of the treatments or choices are easy.  Best wishes to all!

Newspaper Lover

Age 68

DaVinci surgery 11/09. Clean margins, clean seminal vessels.

Rising PSA noted 06/11

Gleason 8

Time to recurrrence 18 months

Three month doubling time (summer 2011).

PSA rose from .07 on 06/11 to .17 on 11/11.

MRIs and bone scans negative so far.

Started Lupron/Casodex 12/11

Began SRT 02/20/12.

Finished SRT 04/16/12

Last Lupron shot 03/12

PSA and testostorone "undetectable"  07/12

Next PSA and testostorone test early January

 

 

 

Posted 8/28/2012 2:12 PM (GMT 0)
I think that patients and partners should be informed that Androgen Deprivation therapy is the equivalence of "Chemical Castration" and that should pretty well say it all.
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