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Am I being rushed, again? Looking for honest input.

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Posted 7/13/2009 8:39 PM (GMT -5)
My birthday celebration is over, had the whole gang over for a bbq, was good, helped take my mind off of PC for a few hours a little.

Now my mind is racing again, thinking of eveyrthing the Radiation Oncologist, my wife, and I talked about today.  He wanted me to start the process this very week, on Thursday.  I did have enough sense to say no to that, but he wants to have the next appt. next week.

What I am wondering, is how much time would be safe to wait, before moving on to salvage radiation.  The dr. said the threshold for it to have any chance of working is .50 PSA or less.

At 8 months out from surgery, my PSA is .11.

Don't know if I am just scared, or am I being rushed into still another treatment with lots of positive talk of course, from a Cancer Center that obviously would love to have me for 35 sessions and full health insurance.  I never used to be that cynical, but after what I learned today, now feeling paranoid.

I wouldn't want to miss my only window of opportunity for a salvage rad cure, but am I being led to jump the gun with the PSA being .11?

Need some good help here.

Deeply concerned in SC, David

Posted 7/13/2009 8:43 PM (GMT -5)
David,
Why don't you get a consult from a noted prosate oncologist. A phone consult could work well as you have all the data. You will get a good unbiased opinion from someone who is familiar with advanced PC.
JT
Posted 7/13/2009 8:50 PM (GMT -5)
David, I agree with John T. We have told so many here get second opinion. A phone concult will probably do what you need. My guess is your resloved to radiation. My guess is that you other concern is should you start HT to kick this monster to the curb. Only you can make that decision. We are all on you side you have helped so very many of us. We are here for you.

By the was Side Note Happy Birthday
Posted 7/13/2009 8:59 PM (GMT -5)
David,

I have read both of your posts and all of the replies. In my opinion, having been in this club for 3 months and read more than I ever expected, I think that the new information that you received today, not surprisingly, has put you in to hyper-drive in regard to what to do. First, as you often advise new members, slow down, take a deep breath and think it through. As most of the guys have opined, seeking a second opinion will give you significant comfort as you work through the decision process. Since you are in SC, what about a short drive to Duke in NC for another perspective? It will give you additional confidence going forward.

It sounds just like what we all went through following our initial diiagnosis: who, what, where and why? Once you feel that you have covered the bases, make the decision and do it. Sound familiar?

Best wishes and we know that you will make a good decision. Trust yourself .

Ted

Posted 7/13/2009 9:03 PM (GMT -5)
I am very impatient but I would go for a second opinion (soon). I sit here wondering why the XXXX the doctor didn't tell you about the margins. I specifically asked my doctor if margins were clear and he said yes. It is time you moved on to greener pastures. I think I would say that doctor had peformed the last DRE on you!
Posted 7/13/2009 9:13 PM (GMT -5)
I don't know whether it helps, but I suspect that his focus on PSA of 0.5 comes from www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=17513807. Note that the nomogram (figure 3) is wrong. The corrected nomogram can be found at jco.ascopubs.org/cgi/content/full/25/26/4153.

The net of this is that with respect to PSA, lower is better, but 0.5 isn't a cliff that you fall off of.
Posted 7/13/2009 10:31 PM (GMT -5)
Thanks for the replies above this post, all sounds like good advice to add to the pile. I asked the new dr. today, what if I wait another 3 months or even 6 months and the PSA never rose any more or just barely moved upward? He said they wouldn't make any difference, because it would still keep going up at some point, and it might make a big jump in the future. Not even sure how factual that statement really is. Hard to be trusting right now, and I am probably the most compliant patient you will ever meet. But now?

I also asked him, that what if I chose to do absolutely nothing, no further treatment or testing, what would happen. He said that with a slower velocity case, might make it 10 years, or with a faster velocity rate like I have exhibited, 5 years or so. I don't know if I should believe that literally either.

Actually sitting here this evening more confused than anything.

David in SC
Posted 7/13/2009 10:34 PM (GMT -5)
I think you are correct in feeling rushed. I have not found any studies that can really tell us how fast these things grow, and apparently it is different for each Gleason type, patient, etc.

I think a deep breath is in order. A second opinion, including a second or third pathology opinion would also be good things. We have all watched PSA's rise and fall. Lab variances, body chemistry, stress, etc. can all effect PSA, particularly at that low level.

Some rad oncs might even want to do HT beforehand. I keep saying here that it is what it is. Don't do something you don't feel convinced it is the right thing to do. Let your research, medical advisors, and your heart let you know when it is right. A spouse certainly has a big say also.

You appear to be a man who thinks deeply, and has a great understanding of the subject. Walk, don't run. Things will work out.

God bless you.
Posted 7/13/2009 10:38 PM (GMT -5)
goodlife, you bring up some of my very thoughts and concerns in the matter. I don't want to be rushed into making another major treatment choice, based what is still a small trace amount of post surgery PSA. It may be the start of something very bad, and will keep rising and rising, but what if it doesn't, or if it holds steady, etc.

thanks for the advice
Posted 7/13/2009 11:50 PM (GMT -5)
Purgatory,

     I guess I have no business posting here on your problems, since so far my post-op PSA has remained  at 0   but i feel  somewhat burned since my ED issues, trimix for sex, are much more severe than yours. Nonetheless, if my PSA starts rising tomorrow  I'm gonna wait awhile and talk to a couple other radiaton guys about when to begin radiation and if I need HT with it. At .11 it seems like it would take awhile to get to .5. See a couple of more specialists in your area before starting the process. Down the road you'll feel you did all you could to make the right decision on this call.........

Posted 7/13/2009 11:51 PM (GMT -5)
Hi I am no expert but looking at your last 3 PSA readings have you thought about having another one done sooner than later it might show if one of the 2 last result were a blip it might also give you an idea about the velocity of your PSA and point you in the correct direction
Posted 7/14/2009 12:09 AM (GMT -5)
Hi David,

I think a key factor here is for you to decide whether or not you actually have a biochemical recurrence following surgery.  This is a tough decision as you've mentioned.  The literature is not perfectly clear on this topic. 

Experts look at PSA doubling time and PSA levels.  Some believe that follow-up therapy should occur when the post-surgery PSA reaches 0.1.  Others prefer to wait for the PSA to rise above 0.2.  Still others wait until 0.4.

Here is one article I have been reading lately at a government site:

The Impact of Definitions of Failure on the Interpretation of Biochemical Recurrence Following Treatment of Clinically Localized Prostate Cancer

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1892622

I hope this helps.  I have found no expert or surgeon in the literature yet, who wants the PSA level to progress beyond 0.5 before considering follow-up treatment.

I also found this article at the link below that looks like pretty good news for people chosing radiation in conjunction with biochemical recurrence following surgery:

Radiation therapy prolongs life in men with recurrent prostate cancer

http://www.physorg.com/news132942098.html

I wish you the best in your decision making, David.

Barry

 

Posted 7/14/2009 12:21 AM (GMT -5)
David,
The second opinion thing is golden. You need it for the pathology and the direction. That stated, your have time, but you know you likely have a relapse. 0.2 is standard for proclaiming a relapse. But so is three consecutive rises in PSA by some doctors. You have time enough to get those seconds and watch the PSA. Ask for another test frequently.

Tony
Posted 7/14/2009 1:15 AM (GMT -5)
A lot of wisdom in Mr. T's post. -- Barry
Posted 7/14/2009 2:08 AM (GMT -5)
I had a very silar history. PSA rose to 0.1 at 8 months. I waited another 2 and had another test. It was 0.17. I called my Onc, spoke to two radiation soca and my surgeon. The Onc recommended a retest in three weeks, all others recommended radiation. One of the radiation docs from MSK advised HT. I retested in three weeks and PSA jumped to 0.27. Doubling te changed from 3 months to 1.5. I have started HT and will begin radiation soon. Bottom line - get more opinions, do more tests, but be ready to make a quick decision if test show rise in PSA.
Posted 7/14/2009 7:51 AM (GMT -5)
David, everyone here has given the best advise I have ever read and I can't add anything different. Only thing I can tell you is with your young age, don't wait too long and loose the opportunity for a cure. That 0.5 marker is just that history shows a decline in effectiveness of radiation after that level. You do have some time to think it over, it is a big decision and one that you will need to get your head around.

As with the surgery, make your choice and don't look back. Sometimes it isn't doing the right thing...it's doing what is right.

Take care,
Posted 7/14/2009 8:01 AM (GMT -5)
Hi David,
I am sorry to hear about this! I would be upset also and would want an explanation. As to the psa My Doc deemed mine a recurrence with 3 rises and It reached .1. I did not have any complication with my SRT other than a little tiredness into a few weeks. I worked thru mine except for a couple of weeks at Christmas. I had good results also, <0.04 and will recheck in November. I know all this is hard but I know you will make the right decision. BTW a belated Happy Birthday!! Good luck and I will be thinking of you. God Bless.

David
Posted 7/14/2009 8:22 AM (GMT -5)

Dear Purgatory,

I was in a similar situation as you can see from my signature.  When my PSA hit .09 I decided to give it three more months to make any decisions. I consulted with a Rad Onc just in case.  It was a tough wait for me and unfortunately my PSA did rise and I opted for salvage radiation.  I  had a positive margin .  You are still undetectable and if you can wait three more months to see if it rises you still have plenty of time to make a decision if need be.  Just a thought.

Posted 7/14/2009 8:42 AM (GMT -5)
Greetings, David.  Reading down through the messages it seems like there is a lot of good advice.  We often say to take a step back and take a deep breath and take the time to consider all your choices.  While it does seem you are most likely headed for salvage radiation, it does seem that you have time to find the right doc's and the right place to do it and to get a second opinion on what you need to do.  In the meantime you will have another 90 day PSA test and you can see if you are hanging around .11 or if it continues to rise and at what pace and that will help you decide just how quickly you may need to move.  Hang in there, brother.  David

Posted 7/14/2009 8:58 AM (GMT -5)
From reading the posts above this post, getting all kinds of good answers and suggestions, all of them good and sound.

My gut feeling this morning is to wait for the next schedule PSA in Mid-September, that is only 2 months from now. At that point in time, see where the PSA is, using the current PSA of .11 as the bench mark.

I already know the Radiation people will work with me, already know the clinic and the doctor from the past, and already know the insurance will pay for it.

At .11, I don't believe I would lose any window of opportunity in two months. I am not much of a gambler in life, so I don't feel it's too much of a risk.

If I decide this route and it pisses off the Rad. dr, then I am talking to the wrong doctor.
This is my current thinking as of this morning.

David in SC

And thanks again, this is one of these times where good team work from the gang really helps. I certainly don't have all the answers.
Posted 7/14/2009 10:51 AM (GMT -5)
David

I too had a simular situation as my PSA returned at about 9 months after surgery. They checked me every couple of months at that stage and after validating the continue rise we moved on to radiation about 6 months after seeing the first return. My numbers were going up rather quickly from <.1 to .2 to . 3 and when I started radiation mine had reached .42. The feeling at the time was there was a cell or two that survied and they would be in the Prostate bed area. To date and it's now been over a year since radiation was completed but all looks good yet with my PSA dropping below .1 right away and now <.06 which is as low as their equipment can read.
I would lean towards your plan of waiting for your September appointment and see what that brings. If it is on a continuing rise a trip to your radiation specialist would begin to make sense.

Good Luck
Norskie
Posted 7/14/2009 11:05 AM (GMT -5)
Norskie, that is my prevailing feeling as of this morning. Not into denial, just want to slow the pace down and make sure I need to use my second line of defense, Salavage Radiation.

Glad to hear you are doing so well after yours.
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