Something I don't understand (RE: declining HT)

BB- no problem I naturally see the difference in the age factor, I just posted a new HT thread today and quoting the ideology of some docs whom say makes no difference when you start HT...is there claim but wait till you read what that is based upon and even Dr. Walsh whom might agree with some of those findings, also points out the many flaws in those 30 yrs. old findings and other abstracts that are used as being with flaws. So, he acknowledges it is imperfect ideology but it is still held out there as the way it is. Talk about fun controversy.

back to the other david

i hear you, but in this group of me (i am one of them), and i know 3-4 others here real well in the same boat, we have agreed before, and I know I have added it as a disclaimer to my posts on the subject, that until one is actually in the position to have to choice HT - or know that you will have no chance of living more than few years, its easy to say what you would or wouldnt do. We are mostly hoping not to have to be in that position to make that choice.

i know you can read a lot of good to bearable stories here with men on HT, but in general, as when Mel started his thread, there are tons of negative stores about life for me under HT to read.

Even my longterm GP, when doing my yearly exam recently, said, you really don't want to do the HT thing, not unless it comes down to that or dying. His senior partner at his practice, died of PC. He would have been mid 60s. He was one of the first people I ever knew that went robotic, in Atlanta. He had quick recurrance and did radiation. It failed within months, then he went HT route. From dx to death, he lasted about 5 years. No cant give his specs, he kept them close to his vest even up to the end. Like another brother here, while he was going through his own hell with PC, his wife died of a leukemia type cancer, and then the poor man basically stopped trying. The swan syndrome at its best.

David

Purgatory David,
I don't believe that reading up on HT can ever prepare you to give advice on what the actual patients can. For example, most men on HT have far bigger issues than libido. Thus most don't care about losing it. We can read all of the SE's I posted here but until you are on the drugs you won't know which ones will get to you. Libido is automatic, but I don't know of anyone who ever took on an LHRH agonist that didn't have multiple SE's. I had a gambit of them myself. And the longer you are on them the worse they get. Intermittent HT is prescribed if possible for this reason.

Zufus statistics on survival are correct. With that said libido is hardly a worrisome side effect. I am a bit different in this category in that I used prophylactic HT. I was treated before signs of needing it even though the signs are that I would eventually need it.

Jerry, I get it, buddy. I really appreciate what you are saying. Hang in there and be well!

I also agree if your cancer is recurrent after primary and secondary local therapies, then you need to at least try HT and you should not hedge on it either. Move quickly because the earlier the better...

Tony

Mel, yes that is correct. And why accelerate things. HT is very effective at extending life ~ the best tool we have to do so in extending life for those with recurrent systemic disease. Whether it's estrogenic, GnRH, or LHRH, it works at least for a while.

When it becomes necessary, it simply is just that. If you can delay chemo for years I recommend it. The side effects of chemo are far worse.

Tony

Tony,

I never impied that reading about HT treatments was equal in value to experiencing it first hand. Its obvious which one would be mroe meaningful.

I have never been bitten by a rattle snake. But I am not going to experience it so that I can have first hand knowledge of how much it hurts, compared to reading about how much it hurts.

I only meant that some men here, that are not favorable for undergoing HT for themselves, have their reasons, and its not just based on an assumed ignorance of the subject.

For those that have done HT - bravo. For those that have no problem going that route in the future - bravo for them too, and if they feel that way, they should move forward.

Almost feels like you don't approve in general, men that are not intersted in the HT route. If so, that is your right too.

David in SC

TC-LasVegas said...


You can ask ten men here on HT about their experience with HT and get ten different answers. And then you can re-ask the same men the question a year later and get ten new answers.

Tony

Great observation. I have only been on HT for 14 months and would have 14 different answer if you asked me how it was. So I think you are very accurate saying that real experience with HT trumps any amount of knowledge one may have without the experience.

Suggesting that one can understand the effects of HT without ever having been there reminds me of something I read once in a 19th century novel about this priest who proudly proclaimed in a social setting that he had read all about the temptations of women and their seductive powers and would know how to resist the urge if it ever presented itself. Two hours later he was having sexual intercourse with a seductive and tempting young woman who trumped his vast knowledge and experience with real breasts.

San Carlos

Been following this thread with interest and since my name has come up more than once in the discussion, I thought I should present my view.

First and foremost, WE ALL START DYING THE DAY WE ARE BORN. Is it written in the stars, foretold by prophets, destiny, bad luck or whatever as to when? Who the hell really knows.

What we do with the life we are given in between is the mark of who we are. What we leave behind is the mark of who we have been. We are not remembered because of our birth date or date of death, we are remembered for the life we lived.

I have no wish to leave this life any earlier than I have to. I have said and maintain now that I have no real desire to start a life on HT. I am not burying my head in the sand, nor do I think that if I ignore it the PCa will go away.

BUT, I have not been faced with the moment of decision as of yet. So NOW is all I can base my discussions on.

Each of us has many others things going on in our lives that affect every decision we make. Because of this each of us make different decisions. Some choose surgery, some rad and some AS and so on. Their is no right answer. There never will be.

My situation is not unique not is it the norm. I am married to a lovely woman who has her own battle with cancer. The ravages of her cancer on her body are nothing that I have come any where close too. You look at her and you never know she is sick. Spend time with her and you know that she is in constant pain. She has been dealing with that pain to greater and greater degrees for the last five years.

MY JOB, CONCERN AND GOAL IN LIFE IS TO BE THE ULTIMATE CAREGIVER TO HER.

Most likely my primary decision for surgery was to get it out, get it done and get back on the job. Some of you were here last June when I first found HW after my diagnosis. Many of you recall that I found out about the PCa while my wife was in the hospital. She went into a comma before we could discuss it. My goal was to research my options, all the while thinking that if she came back to me my job as caregiver would be manifest in the energy and time required.

I do not fear HT because of ED issues. No matter how we each approach dealing with PCa the higher percentage of us will face ED. Surgery guys soon after and maybe they get better. Radiation guys not so soon, but they have it to look forward to. And so on.

I am not concerned about weight gain, night sweats and so forth.

I am concerned about personality change, bone damage and life damage.

Am I the person I am because of the presence of testosterone. I don't know, do you? Will I be the same person in the absence of it. Will I have to same level of energy, tolerance, compassion, understanding, the ability to be a selfless caregiver while on HT.

That is the thing that scares me about it. These are the things that no one can answer fully.

My wife and I have had serious discussions about our lives together. We have had discussions about what happens to each of us if the other goes first. We have arrived at one solid fact throughout these talks.

Nobody is ever truly ready to lose a loved one. The emotional toll is great and lasts a long time. However, she and I know the difference is our situation. Physically, I can survive losing her. Her life would not be the same without me here to care for her. Sure she could hire someone. But would her life then have the same value and be worth fighting for.

So for me and for now, the questions and doubts remain the same, will being on HT change who I am? Will she and I enjoy the QoL that makes this fight against caner worth it?

I am not at the true decision point yet. I know in my heart it is out there on the horizon. My doc will need to be strong in the discussion when it is time. He will have to be honest. He will have to look me in the eye and tell me with certainty that I will not outlive my wife if I do not start HT and soon. He will have to convince me with scientific fact that I will not change as a person.

If I love less, care less, have less compassion and understanding, have less energy to do what I must, then what good is it doing me.

I do not want to die, I do not want to suffer pain and ravage. I want to be the soul mate and caregiver to my wife for as long as we have together. I want to show her the world, or at least the parts we can see by driving there. She is not permitted to fly or sail on ships.

So you see my reluctance to consider jumping on HT with full force and gusto has nothing to do with the mechanics, medical reasoning and physical side effects of it. They have more to do with the soul, personality, love, drive and desire that may be affected by it.

That is my dilemma. That is my decision matrix. I am not a martyr, I am not a hero, I am nothing but a loving husband and soul mate that needs to finish what he has started. That is all.

I am sorry for the length of this. Once started the words kept coming. This stuff, PCa, is not easy. What it is though, is personal. Each of us is truly affected by our own lives and loves. They flavor every decision we make, may they be rational or not. Whether they meet with understanding or not.

I love you guys and just thought this discussion needed to include something other than medical facts and stats. The personal is the part that we can never remove from the equation.

Sonny

Sonny, a beautify piece, one worth saving and remembering. I hope others understand that its not some technical or medical issue with you and the prospect of an HT life. This is about you life, Lynn's life, and your love and life together. That requires no other explanation, no other justification. I understand where you are coming from

David in SC

Post Edited (Purgatory) : 9/18/2010 8:38:42 PM (GMT-6)

other david - i want to acknowledege a valid point  of yours before it gets lost. the point that a man could start HT, and then decided its not worth it from a qol point, and then drop the HT, has merit. it doesnt have to be all or nothing.

=======================

for others reading sonny's heart felt response above, use this as an example, where a man could have a very valid reason for not wanting to go the HT route, and that reasoning excludes facts, data, medical reasons, etc, there is no way to argue what he thinks is right in his heart. all it makes me want to do, is to give our brother the benefit of his own choices, and back him 100%

Post Edited (Purgatory) : 9/18/2010 8:40:48 PM (GMT-6)

Mel,

I appreciate your response and the questions you raised, but I think you missed the point of my post.

As I said in the beginning, I was posting my position, AS IT EXISTS TODAY, because my name had been mentioned as someone who is not sure he wants to strap on the HT.

My post was from the heart and from my personal perspective. It was not meant to be a Point-Counter Point or debate. It is only my position and not one I am recommending to others.

As you know I am quite adept at medical research and believe me I will exhaust all avenues of higher learning to fully understand what I am getting into before I make a decision.

My reference to the things the doc would have to tell me before I agreed were not meant to be literal of course. There are no guarantees in PCa or any other cancer as far as I know.

Take you and I. We both had the same surgeon, had nearly the same path reports yet have opposite ends of the spectrum in results. I had absolutely no issues with continence and you have posted as having little issues. I have not had the favorable PSA test results as you and as you know have moved on to IMRT and MET radiation. So if someone asks you about your experiences then asks me, while we both speak the truth, the results are ours and ours alone.

I could talk to a thousand guys on HT and while much of the info would be the same there will still be things that differ from one to the next. One gains weight, one doesn't. One cries at the drop of a hat and not another. Of course this could on and on. Bottom line, it is as different for each individual as surgery, radiation, seeds, AS and so on. I know there are no iron clad guarantees, I am walking proof of that.

I know the discussion with my onco is in my future, my post was meant to show and still does, that there is a lot more that goes into a decision than just medical facts and stats.

Sonny

Sonny,

I believe in all of the hundreds of posts I have read on HW, none touches me as deeply as yours. I cannot think of another poster here carrying the same burden you are.

Lynn is indeed a lucky woman to have you as a soulmate. If all men approached their responsibilities as husbands and mates like you do, we would have a better world.

If it were my job to give you advice, I wouldn't know where to start. You make your point from the heart. My only concern from your stated position is that if you already have a met, there could well be others. If HT could arrest these developing mets, or elminiate the potential for new ones during this critical care time for your wife, it seems as tho it would be consistent with your desire to make sure you can care for your wife as long as needed.

Please don't think I am giving you advice, I am just thinking out loud.

Look forward to seeing you next weekend.

Goodlife

mel, why do you think you are on Sonny's path? I don't get it. Yes you both had surgery. But you have pulled two strong zeros in a row, and you are about to have your 3rd reading. Sonny had instant recurrance post surgery, went through about as much radiation as I did, and he had instant recurrance from that, and the MET on his leg bone, reguiring even move RT, and he still has an increasing PSA despite all that.

How does that make yours on a similar path?

I must be missing the obvious here. I would think you would thank the proverbial lucky stars that you aren't on his path. You are doing well thus far, of course, no guarantee you will stay that way, but no reason to think youv'e lost it.

David in SC

And if Sonny ultimately chooses not to go down the HT path, that's it, its his choice, and he doesn't have to explain or justify it to anyone else. We just need to respect his decision, if that is what it ends up being.

mel.

sonny already did a splendid job above, in his long heart felt discourse. thats all we need to know. no burr in my rear end, you are quite mistaken there.