Stilll struggling with the decision

The decision I'm talking about is whether to add HT to my SRT regimen. I am supposed to do the SRT set-up Tuesday next week and probably start the following week.

Ford Hospital called me just before I was about to call them. They had just received the PSA result. I told him I was going to start SRT and that would have been the end of the conversation. But I did ask him then about HT and he admitted it was a "very gray area." But he also indicated it might be a good idea, but they really don't know for sure. He then recited the side effects. Basically, it was not a ringing endorsement of HT and he wouldn't have mentioned it had I not asked. Still, he did say it might help. He said the radiation oncologist might know. But my radiation guy is on vacation this week. His office said to ask him when I see him on the 15th for the set-up. I will, but I wonder if these guys are knowledgeable in this area.

I am awaiting a callback from Dr. Hussein at Umich. She is a top medical oncologist. I'll see what she says. She never responded to my email. I had to call the Umich Cancer Center and leave a message. I finally got a callback from someone who will actually then get the message to her and I can expect a callback probably tomorrow.

I have to be honest with myself: I SOOOO do NOT want to do this. It is hard enough to resign myself that I have to do SRT.

I am very frustrated. The feeling is that events are running away from me. Confusion lives on!

Mel

Mel,

I posed the same questions to my Oncologist and Rad Onco when I began my RT, they both agreed that RT would either solve my issues or not. If not, HT could well be in my future. Both are well respected in their fields with MD Anderson. Personally I have a lot of faith/trust in MDA. My RO is now the head of the UCLA Radiation Dept.

My Onco has discussed HT with me in my last two visits. In Sept when my PSA was 2.2 and in January when it was 3.9. He still said not yet. We will discuss it again in May when I have another complete skeletal survey to look for METS.

I think that this is one of those areas where there is not a universally accepted agreement on which is better/productive.

Disclaimer: I am not an MD or any other initial, this is just my own personal experience and opinion. It is not intended to start a discussion of Point - Counter Point that has seen a rise here lately.

Old Sailor said...
... if HT is added and PSA is reduced, they would not know if SRT or HT caused the reduction. 

I don't get this comment.  Old Sailor, my reply has nothing to do with you personally or individually; I have heard this arguement before, and I simply don't get why it's relevant.  Can someone enlighten me?

Other than for academic reasons, who cares whether one has the ability to isolate which specific treatment had the larger affect in lowering PSA?  As the patient, you just want it down.  Once you go through the SRT routine, there is no going back and doing it again (you will have essentially reached the lifetime radiation limit for that part of the body), so that really doesn't matter.  The HT can continue.  Unless you are on a clinical trial studying the benefits of added or not added HT (to SRT), isn't the only real objective to the patient to lower the PSA?  I don't get why this question is relevant.

I do get the point that it is unclear whether HT (with SRT) is strongly beneficial or not.  That has more to do, I believe, with the fact that some men's cancer responds to HT and others simply do not resond to HT at all.  At this point, we simply do not know in advance who will and who will not respond.

So, the part I'm unclear on is why it is an issue to understand (for those who might do both) how much of a contribution to PSA reduction comes from SRT and how much from HT.  Why does it matter...?

what i'm seeing so far are guys who opted for only SRT but now need HT because SRT failed.  again, if there's a chance for a cure or durable remission i'm for hitting the disease with both barrels.

ed

 

Old Sailor said...
Casey, I can only tell you what the Doc told me.  The Old Sailor

I know...I'm just struggling to understand "why" this is relevant to the patient.

Medved:

Even if she suggests HT, I will be very hesitant and might not do it.

(I know, then why ask her).

I just don't know yet.

Dr. Myer's cancer was stage four when he was diagnosed. Rudy Giuliani was diagnosed with prostate cancer about a year after Dr. Myers (2000) and he chose HT + BT + IMRT -- in that order -- and today he is cancer free. 

ed

Ed, in fairness, when any of us surgery guys chose surgery, we did not expect it to fail. But despite having a great surgeon, etc, it obviously does. Then when you have to make the SRT decision, you are looking at odds in the 20-50% chance of it even working, which sucks, but most of us still do it in hopes of being on the good side of those odds. Then that's it, folks, the end of the purely curative means.

Casey, again, not pretending to know more than a doctor or more than you, the but argument made to me by my own doctors about not combing HT with SRT, or jumping to HT immediately after SRT, had to do with the assumed risk, that at some point, you would become refractory to the HT. If used early, and it doesn't help, either on its own or with SRT, then its thought to save the HT till a much higher post-SRT failure level of 10-20. Doesn't seem to be any agreement on the actual number. HT is only going to slow down things for so long, so choosing when to use it, or use it and stop it for awhile, then restarting HT again, seems to be the educated guesswork of the doctor, along with the particulars of the patient.

David

Purgatory said...

Casey, again, not pretending to know more than a doctor or more than you, the but argument made to me by my own doctors about not combing HT with SRT, or jumping to HT immediately after SRT, had to do with the assumed risk, that at some point, you would become refractory to the HT. If used early, and it doesn't help, either on its own or with SRT, then its thought to save the HT till a much higher post-SRT failure level of 10-20. Doesn't seem to be any agreement on the actual number. HT is only going to slow down things for so long, so choosing when to use it, or use it and stop it for awhile, then restarting HT again, seems to be the educated guesswork of the doctor, along with the particulars of the patient.

Thanks for the reply, but that's a completely different question than I was asking.

The question I raised is not the high-level question Mel is asking about whether it is "best" to combine HT with SRT or not...there are differences of opinion out there about that, and no one "right" answer appears to fit all situations (and not all situation are alike).

Rather, the question I raised is much more specific & detailed.  My question was prompted by Old Sailor relaying a comment from his doctor, and just within the past week or so someone else said the same thing (or maybe it was Old Sailor again...I don't recall who asked, but I remember the comment being raised here).  The comment was:

Old Sailor's doctor said that one rationale for not combining HT with SRT was that "...if HT is added and PSA is reduced, they would not know if SRT or HT caused the reduction."

My comment (from earlier in this thread) was:  "Who cares!?"  Given that we don't know how one individual person's PC will respond to HT, other than the academic question, for example, through participation in a clinical trial...it seems to me that the patient absolutely wouldn't care after the fact about which treatment mode caused the greatest reduction in PSA.

So, my comment was put out there for others....   What am I missing here?  I'm interested in learning why doctors are saying this "...we would not know" question.  I hope I explained it better this time.

Ideas?

 

ed,

i see your point actually, but i guess from my point of view, i would rather be tortured in pieces with these invasive treatments, one at the time, instead of taking on all the side effects and QOL issues at one time. If my surgery had worked, wouldn't have needed SRT and all the damage it did, and if the SRT had worked, then I wouldn't need to think about HT in my future (and I am not). guess it just depends how one looks at it. i was in the "only use' what you actually need to get the desired results, so far, for me, that plan hasn't worked very well. in my case, i dont think it has anything to do with my treatment order, i believe it has to do with the agressiveness of my own particular cancer.

david

Mel,

I am probably 4 to 6 weeks behind you.

I have decided no HT for many of the reasons mentioned here. Probably if you took a poll, it appears it would be almost a split decision.

I don't believe many of the " experts" view HT as curative. I understand the rationale that it may allow some cells to die off by starving it for food. But in my mind, unless we can kill off 100 % of the cells, it is only a delaying treatment.

I am saving it for the bitter end. I am hopeful to get a few years out of the RT, which I am insisting be WPRT to increase my odds a little.

Of course I am not suggesting that you or anyone do what I am doing, just letting you know you aren't the only guy out here making this decision. In my view, whether we do HT now or later will have little impact on the ultimate success or failure of our war on PC.

I really have found this to be more of a mental battle for me.

Goodlife:

What does WPRT mean?

Have you decided to do RT?

It seems you are doing very well PSA-wise.

My PSA is skyrocketing (doubling time of 2 months) so things are much more tense here.

But I tend to agree with you regarding HT/SRT.

I should hear from Umich tomorrow.

Mel

Mel,

Actually Tony threw the term out last week. I believe it stands for wide field pelvic RT. In other words, getting the lymph nodes as well. Snuffy Myers is an advocate for it.

My PSA has gone to .02 in 2 months, and I am watching it carefully. I doing it before it hits .05 with my Gleason 9. I am hopeful that it is still in the prostate bed and/or pelvic region yet. I didn't do adjuvent because of incontinence , even tho Dr. Hussein recommended it. So I am jumping early.

Goodlife

Post Edited (goodlife) : 3/7/2011 8:30:10 PM (GMT-7)