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Posted 8/15/2011 4:18 PM (GMT 0)
I am still researching everything I can on HT, HT side effects, HT effectiveness, HT long-term effects, as at some point in time, the entire subject may become a do-or-die decision I may have to make, if my failed SRT PSA continues to skyrocket. I know several of you here well, that are in the same boat as me, to some degree or the other.

I found this study this morning. Sharing it here. Looking for some constructive opinions and thoughts, especially dealing with the conclusions of this study. As our brother Sonny would say, don't want this thread to turn into another pissing contest. Especially interested in the opinions of those on HT long term, and please, no doctor bashing, as we already know there is varied opinions on this subject.

I find it interesting, in that my new oncologist is strongly concerned about quality of life issues over quantity of life issues, and is one reason why he has been concentrating on improving my poor quality of life these past 3 years, and help me deal with putting a handle on all the severe chronic pain I deal with, as the result of being treated for PC. He's well aware of my fast climbing post-SRT PSA number. He is certainly not against the use of HT and/or Chemo for advanced PC, but his deal has to do with the timing on its use.

Not a word has been edited, and I have included the link at the bottom for you to see. Again, looking for good quality input.

At this point, I am still neutral on the studies finding, as to me, its just one more piece of data to add to the pile, before and if I am forced to make a treatment decision.
Prostate cancer, hormone therapy, and physical well-being
Posted 8/15/2011 4:36 PM (GMT 0)
Hi Purgatory,

Being a newcomer here, I am just getting to know everyone's situation. I have read your posts with sadness and truly hope you find treatments that help with your pain, not to mention putting your cancer into remission.

I have only just started HT, so I'm clearly no expert there. But looking over the report, and at the abstract, I saw no mention of intermittent HT, or approaches such as triple hormone therapy. I have heard great things from some folks on IADT3, one person with Gleason 7 (4+3) now having gone 12 years keeping the cancer at bay with fairly good quality of life, and I'd like to see how that fits into the study.

Anyway, best wishes to you.

Nellie
Posted 8/15/2011 4:55 PM (GMT 0)
The results of the study David cites are not surprising to me -- that ADT can have a significant impact on QOL. But, of course, declining ADT and allowing disease to progress can also have a material, adverse consequence on quality of life. A study could compare the QOL of those who decided to have ADT and those with similar disease who decided to forego ADT and deal with the effects of disease progression. Of course, that is not what this study set out to do. Best wishes, Medved
Posted 8/15/2011 4:56 PM (GMT 0)
Dave, Interesting study. A couple of comments. There is no grouping for ADT with or after SRT. The group that both you and I fall into. Since the folks in group A didn't have ADT I would assume that most were cured by local therapy. The men in groups B and c would appear to be the oldest and/or sickest. I'm not sure how they reached there conclusions given these facts, and what it means for someone like you or I. BB
Posted 8/15/2011 6:03 PM (GMT 0)
bb, i agree, as i stated in my premise, just ran across this randomly while searching for "effects of long term use of HT for PC" and this popped up. it certainly doesn't contain all the "what ifs" or all the combinations of men, their current status, etc. i know there are men that are fortunate enough to extend their lives by years with HT, but my query is long term, what is the price in terms of quality of living, and what other damage is being done to their bodies aside from the natural course of progression with just PC.

david
Posted 8/15/2011 6:37 PM (GMT 0)

David, Thanks for posting the info.  These papers sometime seem to beg more questions than they answer.  I would like to know more about end stage QOL.  We know that HT increases length of life for most people but does it ultimately have any impact on end stage QOL.   Obviously most young people are very interested in length of life but my interest is certainly shifting to QOL.

Scholz address physical well being in one of his papers: " Our general impression after many years of experience delivering this form of treatment is that it is tolerable if the side effects are expertly managed. Preventative measures such as weight lifting and diet make a huge difference in how men feel while they are on the treatment. Careful monitoring of blood tests, bone density is essential. The management of side effects like joint pains, hot flashes, reduced libido and impotence is imperfect but expert medical care by knowledgeable physicians and care givers can go accomplish much toward reducing the impact of these problems."

Carlos

Posted 8/15/2011 8:58 PM (GMT 0)
Carlos,

The LOL issue obviously has more impact if you have advanced PC in your 40's or early 50's, I can understand that for sure, espcially if you are still raising a family. The point I got from the article, was talking about QOL issues beyond the normal side effects that we hear about all the time even here at HW. I know from what I have read here, there are ways to work with and around most of the common side effects. My interest was in the long term use, for those that are using it to buy years of life.

I just turned 59, but I still think about the LOL vs. the QOL element. My oncologist said even on the first visit, "Sure, you can do HT right now, and it would make the PSA undetectable, but then what? and for how long?". He feels that with my whole PSA velocity issue from even before dx, that its going to be a tough road to slow things down in an effective way, and that's why his immediate approach is not to do HT at this point. He feels it will be more useful later on, thus, he's doesn't have a magic number picked out for starting it, he feels that its case by case, patient by patient.

Hoping to get more from him on my next visit in less than 2 weeks from now. I am ok with his thinking right now, but want to see a more developed plan for later, assuming when my PSA is checked in December from it's current level (june) of 5.8.

david
Posted 8/15/2011 10:17 PM (GMT 0)
David,
I was 58+ years old when diagnosed and treated surgically with a radical prostatectomy in 1992. I was stage T4 and the cancer had escaped the prostate and was attached to the rectum. Surgery removed the prostate and seminal vesicles that were both invaded by the cancer. The pathology GS was 6 (4 +2) and all the gland and seminal vesicles were all cancerous.

The surgeon told me that much cancer was left behind and recommended salvage radiation. He said that I had 3 to 4 years left and to get my affairs in order. I had zero knowledge about prostate cancer and its treatments. At surgery I had a 23-day hospital stay and almost never made it out alive. Missed a colostomy when at surgery they decided to repair a linear tear at the rectal wall with a piece of omentum from the gut. That caused an acute case of pancreatitis and made me a diabetic. The digestive system was blocked and I had tubes in and out of every orifice in the body.

After the hospital discharge I figured it was time to start a fast course in PCa and I hit the only place available at the time: the local hospital’s medical library. I started studying my options to preserve whatever QOL I had left and because of digestive and bowel damage at surgery decided not to have salvage radiation. At the time Lupron and flutamide existed but because of the residual cancer I decided for physical castration instead. This was done to avoid the usual testosterone surge and the potential to promote a rapid growth of the residual disease. This as you can imagine was a very difficult decision, but I was trying to gain as much time as possible to get my affairs in order. I retired from work after 34 years and dedicated my time to learn as much as possible about how to beat prostate cancer. At the time I was expecting to extend my life as measured in months and every day was precious as I learned more and more about the disease that was killing me. I did change my diet to help me beat PCa. I am mostly vegetarian.

My sex life as I known it ended after surgery and further more after the orchiectomy. I do miss that even now that I am 78. But my wife and I have learned how to cope with that loss after 52 of marriage. I can’t say that my life since then has been terrible or physically demanding. I do have the typical side effects caused by androgen deprivation. Loss of muscle mass and weight gain, hot flushes now still present but much diminished in number and strength. My brain is not what it used to be as memory sometimes fails me, but I do not consider it as a side effect. In my case it is more related to age and data overload.

In summary, with the current option of intermittent deprivation and the many ways to ameliorate potential side effects, one could have a better QOL while reducing progression risks. That is my personal story and personal decisions made with the little knowledge I had at the time. I consider myself lucky because I have known in all these years many men who have succumbed to PCa. I have been helped and helped some of those men survive. My objective has been to avoid dying of PCa. I do not know if I will succeed on that, but I continue to try day in and day out…one day at a time.

RalphV
Posted 8/15/2011 11:47 PM (GMT 0)
Ralph,

I was hoping you would weigh in on this thread. If your goal was to beat death via PC, I think you have done a pretty darn good job of beating the Grim Reaper for nearly 20 years. When I chat with you, I often forget your current age. What age were you when you underwent castration? Right around the time you were diagnosed? Still in your late 50's or was it after?

I can only imagine what a hard decision that would have been. Years ago, from my own research, that was a much more common method than the modern HT methods, guess that takes care of the "T" issue once and for all.

I love sex as much as the next guy, but preserving sex is still not on top of the list with me. After my open surgery, the game plan was wide margins and both bundles were expected to be removed. Due to difficulties, that didnt' totally happen, and ED hasn't been an issue, even on one bundle. To be honest, had the right side been able to have been removed, and I had the expected ED (my wife and I were comfortably ok with that possibility), if that would have prevented me from both failed surgery and SRT, and my present fast rising PSA, it would have been an acceptable trade off to me. But that wasn't the case, and I will never know if that would have made the difference or not.

You also have 20 years of learning about PC behind you, and no telling how many people you have helped or directed in those years. I think that is great.

Your personal journey is a good one, and a good testimony. Would you say, in your wider experience level, that your situation is the norm, or the exception? Correct me if I am wrong, but have you seen men along the way sucumb to death via PC, despite aggressive treatments and intervention?

I am still trying to come up to speed now that I have crossed the line into advanced PC. I still don't see a clear path. In my professional background, I am use to exact numbers and exact answers, I don't like being forced into grey areas, so I usually am suspicious if a treatment doesn't have clear answers from the professionals.

Appreciate your input though, and I do admire what you have been through and have done over the years.

david
Posted 8/16/2011 12:23 AM (GMT 0)
     Please remember for some unfortunate people, like my dad for instance Hormone Therapy was the only treatment option.  My dad was diagnosed with prostate cancer this past April 10 out of 12 cores positive, gleason 4+5 with multiple mets to the bone.  When faced with this situation, I think most people would opt for treatment rather than no treatment at all.  My dad is 64 years old and just retired this past September.  No was near ready to call it quits.  And yes he had yearly PSA checks, his was only 2.45 when he was diagnosed.  Right now he is doing pretty well and this diagnosis came as a total shock.  He is one of the unfortunate ones in which the disease isn't diagnosed early.  He will probably die of Prostate Cancer instead of with Prostate Cancer.  Yes hormone therapy may decrease quality of life in some ways, but this treatment is better than no treatment at all.  Hopefully it will extend his life for sometime.  Either way with or without hormone therapy I am sure the end of his life will not be great.  But he doesn't have time for active surveillence,isn't a candidate for surgery, and they can't radiate his whole body.  I only wish he had other treatment options available to him, then he might have a chance to live another 10 years or so.
Posted 8/16/2011 12:29 AM (GMT 0)
David,
I was operated In Tucson on June 29, 1992. Left the hospital July 21, 1992. The catheter was taken out August 31, 1992 and the orchiectomy was done here in Phoenix on September 10, 1992.

I was offered Lupron and flutamide but I was concerned about making the residual cancer grow fast and that is why I decided to have an orchiectomy instead of radiation and to reduce testosterone rapidly. When the testicles are removed, testosterone drops rapidly (I can vouch for that!) and there is no flare up as with Lupron. It was a radical move dictated by post-surgical conditions of the rectum repair.

I don't know if I am an exception. I have members of my support groups on Lupron for 12 and another for 14 years. I have known in the support groups of men surviving for many years with deprivation as their only treatment.

I think that response is very related to the timing and status of the disease when the therapy was applied. I have also in my groups had men diagnosed late who responded to deprivation poorly and at least two of them died in less than two years of diagnosis. I truly believe that responses to androgen deprivation are more effective when the tumor volume and androgen status of the tumor volume is still very androgen dependent.I think that this affects some of the variable results seen in studies.

I also believe that intermittent deprivation is as effective as continuous deprivation and has a better QOL profile. I just lost a very good friend last year after 14 years of battle. We fought it together and research it together (he was a fellow chemist with great experience in platinum compounds), but at the end we lost the battle. It was a tough loss because we helped each other and him losing the battle was like we both lost the battle. It was a sad time indeed.

RalphV
Posted 8/16/2011 1:10 AM (GMT 0)
Hi David, I am following this thread with interest, as may have to face the decision to start HT myself as you know, I am pretty sure that I will go for it when and if my Oncologist say's it is time. It is a dilemma, do nothing with rising PSA and wait for the end?

The thought of rapid development of bone mets spreading throughout ones body if you do nothing is quite frightening, and I think quality of life would be poor at the best.

My Oncologist explained the side effects to me, including risk of heart problems and diabeties, and also said not all people get bad side effects, I am going to take the plunge when it is time, I don't mind buying a few more years.

Just my opinion.

Regards Mal.
Posted 8/16/2011 1:22 AM (GMT 0)
ralf,

if you dont mind me asking, was there much pain after your physical castration? what was the recovery like?

sorry about the loss of your long time chemist friend, especially since you were helping each other in your respective battles, kind of hard to replace a friend of that caliber.

when i see the oncologist again soon, i am going to ask him a lot more specific questions, rather than the mostly listening mode and introductory session we had last time. i will keep some of the points you have share with me here and on the chat, and see if i can get him to focus more onto a real plan, its only natural to assume that my PSA is still climbing away.

appreciate your help,

david
Posted 8/16/2011 1:25 AM (GMT 0)
mal,

you were definitely one of those in the "same boat" i referenced. i am paying attention to your situation closely as well.

does your doctor have any particular number in mind for effective use of HT? I.e., psa of 5.0 or psa of 10.0, like some doctors do.

if you jump onto HT before I do, I will be following your experience closely. think its good to compare notes.

best to you,

david
Posted 8/16/2011 1:47 AM (GMT 0)
Hi David, my Oncologist said if the PSA rose slowly he would do nothing until it reached the same level as it was when diagnosed which was 5.8. Or if it rose quickly between now (at 1.31) and next PSA (end of October) he would talk about starting HT. So the wait begins, at least I have a path to follow if necessary, he also said that it was quite possible that the HT would send me into a long remission.

I still think there is some connection between the fact that my PSA had been 0.5 -0.7 for 4 years with a "normal" PSA test, and only when an Ultra sensitive test was ordered the result was 1.31. maybe just clutching at straws.

Mal.
Posted 8/16/2011 1:58 AM (GMT 0)
mal,

thats an important difference in our 2 cases. you had the 4 years of a fairly stable psa. my srt failed within 9 months, then all of a sudden took off and up quickly. your starting psa at dx was 5.8 as you said, and mine was 16.3, having risen to that from 5.8 the year before dx.

was the ultra sensitive done by a different lab? curious. and i am trying to remember, did you do a retest of the 1.31 at the time, or are you just going to wait for the next one?

david
Posted 8/16/2011 2:15 AM (GMT 0)
Yes i see the difference, no the test was done by the same lab,tempted to retest but think I will wait for the next one, it is the normal test so should be interesting.

Mal.
Posted 8/16/2011 2:38 AM (GMT 0)
If I were you, I would have no trouble waiting for the next one. It should confirm the last one as either a fluke or a spike. Either way, you will know soon enough. We can always hope for a reversal in direction
Posted 8/16/2011 2:41 AM (GMT 0)
David,
The orchiectomy was done as an out patient procedure using a spinal block by my local urologist at the hospital.. You ask about pain and recovery. The worst part was the hormonal change that I experienced. It was sudden and I really was affected by this change and I remember well that day. I was back home before lunch but wasn’t much inclined to have any. I went to bed and had a nice siesta. Recovery was unremarkable and involved some change of dressings and removal of the dual drainage material. There was no pain at all. The scrotum healed rapidly.

I am glad that you are asking for more definitive action plan(s). This is important to have, as there are so many options these days. You should clarify the option if intermittent versus constant comes up. As always we wish you the very best!

RalphV
Posted 8/16/2011 2:53 AM (GMT 0)
ralf,

thanks for the answer. i read recently, that with the castration op, excuse my non medical description, is that the "sack" is not empty, that after they do whatever they do, they put the "balls" back in. Does that sound right to you? A little suprised that they didn't put you under for that, I had a bad experience years ago with a spinal block, I don't think I could do that again. Do you think many men opt for what you did now, as that was quite a few years ago when you had that done? It seems that if one were to be on HT long term, or perhaps indefinitely, there could almost be advantages to doing it your way.

can you briefly explain this sudden hormonal change you felt, if you can still remember it clearly?  i am trying to visualize what you felt or thought.  was it distressing mentally, emotionally, or both?

i always get at least an hour with this oncologist, so i don't feel pressured at all to ask questions, he will take the time to answer anything i ask fully. i feel fortunate to have doctors willing to spend quality time with their patients. i am still not happy with coming up with a goose egg for determining the severe pain i am living with, now that i have seen a top ortho doctor to no avail. i thought about a neurologist, but based on past experiences with them, seems like they often come up with vague answers and solutions, not sure i want to spend the time/money to do that. hate being on the pain meds so much, for now, its the only real relief i can get.

david

Posted 8/16/2011 4:02 AM (GMT 0)
David (mom says hi!), David, BB, et al,

I have the same discussion in progress. Come late Sept. (hopefully after GFMPH weekend) I will know what my real PSA doubling time is over a year elapsed. After 3 tests it is a solid 45 days.

Having had DaVinci surgery, G 4+5, + Adjuvant RT (lots of RT side effects, no HT) I have HT as the next step. I have contacted an important medical oncologist, but he feels I should try and fail HT with my current (well respected) uro before his skills kick in. So, based on the Sept. PSA (expected to be the third confirmation of a 45-day doubling), I get to pull the trigger. GFMPH guys, be ready for a freaked out participant.

But I have a completely different scheme. No wife, no kids, no grandkids. Hanging in mainly to keep from losing my insurance as an employee, so I don't have to find a bridge to live under.

No desire to live badly, but I can't even go to a movie today.

At age 58, things could change. A cute girl could home in on my pension, or want my car in a 30-day quickie marriage settlement. Since it will all go to an indirect relative, if she finished me off, at least I would go happy and unburdened.

I guess my point is that Quality Of Life beats, and by far, Quantity Of Life for me today.

Posted 8/16/2011 5:16 AM (GMT 0)
142 -- your post makes me sad.  very sad shakehead .

ed

 

Posted 8/16/2011 5:47 AM (GMT 0)
harriett, i appreciate your story about your father. of course in an advanced case such as his, HT would be the primary treatment, though not curative. i wish him well, and one can hope that something new or better comes along to help him add some more time. please keep us posted about him.

142 - say hi to MOM for me as usual. that cute girl might just come around when you least expect it. didnt realize until tonight, that we were only 1 year apart in age. Enjoy that GFMPH weekend with Jeff and gang in NY. I am still hoping to finally make a guest appearance, I will know for sure when I get back from Charleston the weekend after next. The day we come back, I have my next meeting with my oncologist. You too, are in the "same boat" category that I referenced, thought of you.

david
Posted 8/16/2011 7:36 AM (GMT 0)
Hey ralfinaz, thanks very much for posting the link to Dr Myers video on HT treatment, I showed it to my wife, and it made her feel better.

Mal.
Posted 8/16/2011 6:15 PM (GMT 0)
David,
Yes, these days they use implants to make the testicles look normal. I could have that done, but see no need.

The hormonal change was sudden and affected me both mentally and physically. I would get up in the morning and in a question of two short hours I would be flat out of energy. Just like a deflated balloon. Remember, I was just recovering from surgery and that long hospital stay. These conditions contributed to the way I felt.
Facing death in 3 to 4 years I am sure was contributing to this general malaise.

I decided then an there to stop feeling sorry for myself and to use the time left to do what had to be done. I negotiated my retirement while still working reduced hours and changed my diet and exercise regimen. All this while taking an intensive course in PCa to face whatever was coming my way from a knowledge base. Time went by and my energy level improved and more importantly I did not die. The impending death was placed in the background. I recovered slowly and felt much better both physically and mentally.

I give credit to the support groups for my recovery. Understanding the disease better and helping others to help myself contributed to my recovery and in time is one of the motivating forces that drives me to live and enjoy life.

RalphV
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