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Posted 3/10/2011 11:58 PM (GMT 0)
Please don't let this post be a base just to slam my previous PC decisions.  And let's factor out the unusual complications I have already had, i.e. all the cath time, the radiation burned bladder, the urostomy.  I am looking for opinions on just the facts of my numbers.

PSA at time of  open Surgery was over 16, with never any evidence of infection or any other prostate ailment.

PSa at all but tripled in the previous year to dx.

BCR was declared approx. 9 months after surgery, despite a pathology of 3+4 Gleason, Staging T2C, and one small

positive margin.

SRT began with PSA of .16, and 72 gys over 39 sessions, no HT before, during, or after

15 months later, SRT declared failed.  PSA jumped from .04 to .06 in 3 months, then jumped from .06 to 1.24 in six months.  Restest was done.

So other than seeking a good medical onclogist, which I am doing, what else can I do, or should I do?  What would be your impression of the nature of my PC?

My current doctors strongly feel I am the poster boy of "Fast PSA Velocity" before dx, to the letter.  My current doctors do not feel that I should jump into HT at this time, to wait until the PSA is at least 10 or higher.  They also know that I am not favorable to do HT.

Looking for honest and constructive opinions.  Please, no doctor bashing.

David in SC

Posted 3/11/2011 12:04 AM (GMT 0)
Great honest thread Mr. Purgatory. I repect that!
Posted 3/11/2011 12:09 AM (GMT 0)
If you wanted a 'free' constructive observation and possible advice you could post to P2P and usually a doctor like Barken, Lam, used to have Strum there in the past or others may look over your history and respond to it with free advice going forward. Other sites that are more patients with inputs:  www.prostatepointers.org     www.listserv.acor.org (PCa area list) or join the group at  www.hrpca.org  (originated by Howard Hansen)

John T or Tony, et al can hook you up with the weblink  of P2P to get that process started. I contacted Dr. Barken early on for 'free' incite on my case....glad he answered, glad it was free too.

Best to you, I will stay out of direct doctor suggestions, lots of choices to consider.

Post Edited (zufus) : 3/10/2011 5:13:35 PM (GMT-7)

Posted 3/11/2011 12:43 AM (GMT 0)
David,

Have you considered Pom juice?...(just kidding). In fact, given my recent increase I may do the following:

I have been drinking the stuff and perhaps I'll stop and see what that does to the PSA. I recently read an article that said it may have the reverse effect on some patients. Sort of like George Constanza on Seinfeld. I'm going to start doing the opposite of what I think I should do.

On a serious note, you and I have received some not so pleasant PSA results recently (me--.09 up from undetectable).

I think the overwhelming option out there is HT...and it's just a matter of if we go down that road and a matter of when. Seriously, what are the other options?

Jerry L.
Posted 3/11/2011 12:58 AM (GMT 0)
David,

I think youe decision to get a top PCa med-onc is your best action.

Not bashing your docs, but I have never understood the waiting until PSA is 10 to do something. There are stories on Yananow where people that did that found significant mets before they reached 10. I asked the question of my med-onc and he says generally he would intervene much earlier. Obviously I am missing something on this.

I am also in the soiuth and have decided if my primary treatment fails I will go to either Meyers or Sartor. From Atlanta I can get to either of them in a day. I have a really good med-onc here and I think he would be open to a collaberation. My urologist has patients that see Meyers and he is fine with collaberation.

Best wishes
Posted 3/11/2011 1:35 AM (GMT 0)
I agree with JNF and Zufus. It's time for the opinion of a top shelf medical oncologist. Regarding HT, with a rapid PSADT much of what I have read suggests that HT be used to early to put a stop to progression before it gets out of hand. Dave, best of luck with your treatment decisions. Get the best help that you can. BB
Posted 3/11/2011 2:05 AM (GMT 0)
First off best of luck whichever way you go.

My second thought would be if anyone is up on what to do in which cases it would be you. You've seen the paths of many PCa brothers and know all the options.

Take a deep breath, put PC in the back of your mind if possible and follow your gut.
Cheers
Dave in Durango CO
Posted 3/11/2011 2:09 AM (GMT 0)
zufus - i dont know anything about p2p, sounds like an interesting possibility

jerry - the POM isnt going to happen with me, all kidding aside, you said what other options are there? that's partialy what I am asking here too

jnf - i would rather the top HT guys here answer, but i am under the understanding that there are multiple schools of thoughts when to start ht if needed. some say hit it early on. some say to wait until the psa is much higher. i don't think its that cut and dry.

i do believe in what walsh and some other pc top dogs have written about PSA Velocity in the year before DX, so far, my case has acted much more agressive despite my actual numbers. There has to be something to that line of thinking. There are plenty of guys here, Gleason 8/9, strong Stage 3 cases, that do much better and don't have reccurance.
Posted 3/11/2011 2:35 AM (GMT 0)
David, your question is way above my pay grade, but your plan sounds like a good one to me.

Sheldon AKA Sleepless
Posted 3/11/2011 3:05 AM (GMT 0)
I have found P2P to be considerably less informative since Dr. Strum stopped participating. Dr. ("Coach") Barken still responds, as does Dr. Lam on occasion, but their responses have tended to be more cursory than Dr. Strum's were. Still, I suppose its better than nothing, and worth the price (free).

http://www.prostatepointers.org/mlist/mlist.html
[url]
Posted 3/11/2011 3:09 AM (GMT 0)
Hi David,
My father had rapid rising PSA after months of his treatment (he had rad and brachy)... Afterwards he was only under the care of his uro at the time for hormone treatment. My father died before my eyes. It was very hard, but it was several years ago. I told myself I would research what I could to avoid his fate. If I knew then what I know now, I would have had him on a plane and gone with him to see Dr Myers or similar. I believe he could have lived a much much more enjoyable and longer life under the care of someone who was an expert with hormone therapy and not his local uro.

Just my two cents.

Post Edited (Squirm) : 3/10/2011 8:20:45 PM (GMT-7)

Posted 3/11/2011 3:23 AM (GMT 0)
David,
The only suggestion that I have is to get your pathology slides and send them to Bostwick to have a ploidy analysis or any other markers that he may suggest in order to give you more nformation about the type of cancer or varient you may be dealing with. The other thing you can do is to go to Fla and get the new Combidex type scan to see if there are any lymphnodes that could be targeted for removal.
You already know my opinion about starting HT as early as possible and having it done by the best prostate oncologist you can get. There are other tumor markers that should be tested. You can look on the prostate pointers P2P archives and look at some of the markers that Dr Strum uses to evaluate patients in your situation.
I would definately read "Beating Prostate Cancer; Hormone Therapy and Diet" by Dr Myers and "Primer on Prostate Cancer" by Dr Strum. You may also want to get the PAACT old newsletters.
JohnT
Posted 3/11/2011 3:35 AM (GMT 0)
David: regardless of whatever path you take - I wish you all the best.

I am not an expert at all the HT and technical stuff , but what I gleaned from the symposium for "better care for men with prostate cancer" - it was revealed that there are at least two types of PCA in which one is hormone resistant... are there tests to see if your PCa could be that way, which may relate to how aggressive it can be?

And along that line, am interested in hearing from the HT guys and how the different stuff reacts / interacts with trying to maintain a normal life while battling this confusing disease.

hugs,
BRONSON
Posted 3/11/2011 3:59 AM (GMT 0)
David:  I think I have mentioned this before but I'll try again.  If I were you I would start HT ASAP, with the understanding that if it is too much or you believe your personality changes or something else happens that you believe is HT related and you can't deal with it you can stop at anytime, that's what I don't understand about you guys who just say no way to HT.You can always stop if you don't like it, the worst thing that will happen is your PSA will go down and your disease will be stopped for a period of time.  You may be one of the lucky ones and not have much happen other than hot flashes and a little fatigue from time to time.

I've always believed that you don't let the cancer get a grip if you can help it, meaning hit it early and hit it hard, probably ADT 3.

I wish you luck, you could stand some.  Don't wait too long if you have a change of heart and decide yes to HT.

David

 

Posted 3/11/2011 4:10 AM (GMT 0)
Hi Purg -

For sure I would go to one of the top docs for guidance.

I'd ask:

1.) what are the studies telling us about the pros and cons of waiting for PSA to hit 10 vs. going to HT earlier? Lots of people trade opinions on this, but have their been any high quality studies?

2.) There are trials underway or recently completed which combine chemo with HT rather than waiting for HT to fail and then turning to chemo. I don't have any specifics at hand but I seem to recall that they were finding benefits to combining both approaches in parallel. I would want to explore this.

For example www.dana-farber.org/apps/clinical_trials/trial.aspx?1796 This trial is compares ADT with and without concurrent chemo for metastatic PC so strictly speaking you don't qualify (that's the good news) but it illustrates the kind of research that might be relevant indirectly to your situation.

If I weren't already doing all possible diet interventions I would jump on that, too. At least for six months and see if it affected the doubling time. If it doesn't you can always go back to steak.

Good luck!!!

David

Post Edited (proscapt) : 3/10/2011 11:29:30 PM (GMT-7)

Posted 3/11/2011 6:05 AM (GMT 0)
sheldon, thanks my friend

medved - will check out that link

squirm, that must have tough with your dad's situation, sorry to hear it. when my father died in 1993, we weren't even on
talking terms, and he died the bitter and angry person he was. what a difference

johnt - you about got me convinced to read snuffy's book at last. also - as much as you have researched in general on pc, do
you put much credence in the PSA Velocity pre-dx line of thinking? Do you think my case is clear cut with that in mind, considering my track record so far?

bronson, thanks as always, i am hardly an expert at any of this, but from how my pc journey is going, despite my numbers on paper, its acted agggressive and a bit erratic from the start

dkob david: some good advice there, will keep under advisement. its not so much the lack of sexual interest (though its a shame since i am one of the lucky few with no ED), or the hot flashes, etc. The fatigue part is not a casual subject with me.

Before I ever had PC, I was dealing with 10 years of chronic fatigue from the first radiation I had been through in the "old days", never recovered from that. Now, after my very negative SRT experience, I have even greater chronic fatigue. My GP strongly feels I have far exceeded my lifetime radiation limit, and attributes all my ongoing fatigue directly to the combined radiation treatments. If HT causes even more fatigue, someone like me is going to end up being comotose (not literally) if even more fatigue was thrown on my back. When Ihve been on harsh drugs in the past, it has destroyed the little personality I have, but more importantly, all my creativity, which is very important to me from a quality of life point of view. I don't want to be alive, if it means that the "real me" doesn't exist anymore.

pro - your questions are good ones to ask, and will keep those handy for future reference. for all the talk and joking i do about the diet part and the taste-good prostate diet i promote, i really don't eat all that terrible. don't eat a lot of red meat, i love all vegetables, not heavy into fruits, naturally don't like or use much dairy products, i mostly stay away from all fried foods. my worse dietary vice is that i am into sweets, and since i have no diebetic risk ever so far, its hard to keep them away from me. grew up in a family that had deserts every single night. i don't drink or smoke. i always eat salads minus any kind of dressing (not into condiments at all), and I only drink water, lots of it, 2-3 liters a day at the least. my diet is far from perfect, but as you can see, i do put some effort into it. exercise, while never been a gym rat, my 2 days a week at physical therapy give me some, considering the lack of energy i naturally have.
Posted 3/11/2011 11:25 AM (GMT 0)
Purg and others the link to P2P (via medved) is herein clickable link now:

http://www.prostatepointers.org/mlist/mlist.html 

Dave other ideas:  contact 2-3 or more oncologists of your choosings, interview them and hear them out (take a recorder and the wife), compare all aspects of hiring any of them and then maybe choose one, you can always fire a doctor and go elsewhere (maybe not easily done, but even Andrew with no money has been there and done that and is doing well at this time).

Also David/Purg you probably should get the Paact Newsletters sent to you, join up at www.paactusa.org  (you could write them a letter with your history and they may answer or write about your journey if you wished to give them such, they published a piece I wrote to them back in like 2003 or so...much to my surprize). 

Medved- glad you had the weblink, I am taking the liberty to make it a click on event for others, I totally agree with you that P2P is not quite as good with the absence of  Dr. Strum...shows the quality of the master compared to diciples (LOL). I miss him terribly and the loss to PCa community is noticeable...I hope he compiles his experiences and has a new book for us.

John T- glad you added to this with useful ideas, as usual and same to the others adding comments that could be useful to David

Post Edited (zufus) : 3/11/2011 4:46:20 AM (GMT-7)

Posted 3/11/2011 3:19 PM (GMT 0)
David, one thing I would suggest is to ask your current doctors, or the med. oncologist you find about alternative to HT, such as the often mentioned DES and others, that aren't the front line, side effect producing ones like Lupron and such. There appears to be other, older and off-use meds available to use in the place of the big 2 or 3 that have such side effects on people. That is, if you do choose not do the regular current treatment plan that most oncologists will suggest today. Either Zufus, Ziggy or someone here has talked about, and I think used, some of the older drugs and ones that had had success in womens cancer.
Posted 3/11/2011 4:56 PM (GMT 0)
David,
Velocity is just one data point and taken by itself doesn't mean much. For example my absolute velocity in 2009 was 10 points, alarming by itself, but when taken with the fact that my doubling time was still three years and PCA3 was still low the high absolute velocity could be explained mathamatically because of the large base number. What ever was growing was growing large, but at a slow steady rate.
I don't know what your doubling time was, but your current doubling time indicates an agressive growth rate. The absolute psa of 16 was a high indication that the PC was growing outside of the prostate or it was a large tumor. (The larger the tumor the greater the chance of it not being contained). High psa velocity is one indication of agressiveness, but must be used along with other indicators to get a more complete picture. You can go back and plug what numbers you have into a nomogram and see what it said.
Hope this answered your question.
JT
Posted 3/11/2011 10:29 PM (GMT 0)
This is a great thread IMO. I know I have learned more about other avenues of possible treatments. Thanks
Posted 3/12/2011 1:32 AM (GMT 0)
David:

You are at least making a start by asking for honest input. But there are some questions where you might get differing answers, such as when to start HT. Honestly, I would think that with high PSADT folks like you and I, you might as well start ASAP. Think about it. If you truly have a 6-weeks or even a 2-3 month PSADT, it won't be long before you are at that magic PSA # anyway. So better hit it while the load is small.

The best thing you can do is find a good top-notch medical oncologist. (PLEASE DO NOT INTERPRET THIS IS BLASTING YOUR CURRENT DOCTORS!). Whether it is a "name" guy like Myers or Scholz or someone else with good vita at a big-name institution, try and find someone. I think I posted elsewhere that I crafted my own criteria. Here is what I posted:

"

I am very worried due to my relatively poor pathology and my post-op fast PSA doubling time (two months). After a lot of consideration, I’ve decided to use my last curative bullet, SRT, without HT. Should SRT fail, my choices will be fewer and less certain. I will want a doctor who excels in the ART of treating PC. In short, I’m looking for a very knowledgeable doctor who thinks well INSIDE the box but could go OUTSIDE the box if truly warranted. I would want a doctor who is experienced with advanced PC, knowledgeable in all aspects of this disease (including the latest research regarding drugs, tests, genetics, diet, etc.), and compassionate. In short, someone who will listen to my concerns and answer my questions. My goal is to live many more years, productively, with a good QOL. I’m sure that’s probably the goal of almost every advanced PC patient! In my particular case, since I live in Michigan, I would hope we could do a few long distance consultations in addition to a few regular appointments and that we could arrange to do some tests, if necessary, in Michigan. "

I formulated this before my doctor search. I bet if you thought about exactly what you want in a doctor, some or all of the above would be uppermost in your mind too.

In terms of tx. and options and when to use them, it seems if you find the right doctor, then he/she will answer all of those questions. I know in that Scholz video (I posted that link in the other thread; let me know if you can't find it), he mentioned myriad tx. So, maybe some doctor can suggest another alternative to HT. But that begats another question. You don't want HT because of its known horrendous SE and your particular disposition to SE. You understand that chemo and many other drugs also have terrible SE. But, again, this is where the information gleaned from a SUPERB DOCTOR might come in handy.

David: are you willing/able to travel? Maybe if you find the right doctor, you can just have a consultation and then he could work with your local oncologist. That might help in terms of convenience and cost (traveling and maybe even insurance considerations). Another thought: Is Duke that far? Maybe they have some fine doctors. I am in a couple of groups. If you'd like, I can make a post seeking experts in SC or nearby. Maybe some of the participants can mention some names based on first hand experience.

Let us know your follow-up thoughts.

Remember, you, Sonny, and I are having very similar experience. You are 1/2 step behind Sonny and I am one tx. behind you! (Another thought: I think Sonny is seeing someone at MD Anderson. Why not call him and see what he thinks).

Mel
Posted 3/12/2011 2:08 AM (GMT 0)
zufus - good advice and tips as usual, thanks.

james - thats a good idea too, something outside the normal ht choices

johnt - good advice too, i need to past some links to more exactly what i am talking about on the velocity. my uro will be more than happy to have my pathology slides sent for another opinion. you would think, that i was T3, not T2, in how things have transpired since my original surgery

mel - sonny and i have spoken often, and have shared thoughts on the ht subject. duke is about 4-5 hour drive for me. yes, travel is an issue for me unless i can fly. embarrassed to say, i have had a phobia about long car trips for nearly 18 years. during that time, i haven't ever driven more than 75 miles from home in a straight line, that's about my comfort level. now flying, no problem. call me weird, can't help that part.

i would live to talk to my former medical oncologist from 10 years back, he was a brilliant and caring doctor. when i was dealing with the ultra rare cancer i formerly had 3x, he was considered the world's expert on it, being that i was one of two patients he was seeing with the same cancer. considering that we were among a small group of only 38 known cases in the entire US medical history, he was the man to talk to. he thought much outside the box, was willing to take calculated chances when needed. problem with him: i am in the middle of litagating his employer so to speak, and my atty has advised me not to have contact with that radiation center for obvious reasons. so i am kind of at step one.

my next 2 psa's will be critical to any future thinking, if it moves anything like what it did in the past 6 months, i would almost be afraid to see the results.

the ht resistence has been well explained by me, here. its not based on fear or ignorance. its based on choice, and overall qol issues, that go far beyond my pc fight. i have been to hell and back many times prior to having the thrill of having PC. i am growing weary of constantly fighting for my health, to be honest.

i knew in my heart, that the srt would fail, the odds were so stack against me. i feared a disaster, and i got it, no need to repeat all that here. if i had trusted my gut on the srt, i wouldn't have done it, and obviously the cancer would have even spread much further and much faster.

the early signals i am getting from my doctors, that with my pc history so far, ht probably wont work for long with me, so its kind of like, what's the point? setting myself up for another treatment failure with bad side effects? even i have my limits for suffering, i am not a complete glutton for punishment?

got a lot to think about, and thus, seeking as much good advice as possible. right now, i still dont have to act rash, and i dont plan to.

david in sc
Posted 3/12/2011 2:12 AM (GMT 0)
David:

I share that concern about the doubling time and HT not working for long. But, maybe that's not true if one starts HT early. I don't know. But I bet some of the real good doctors know? Or is that another gray area?

But I fear you are correct there!

Mel

Posted 3/12/2011 2:18 AM (GMT 0)
Well Mel, this might be overly simplifying the situation, but I was also told that surgery would probably finish off the PC, and then I was told the SRT might too. I blew through my two curative cards in a little over 2 years.

david
Posted 3/12/2011 2:50 AM (GMT 0)
David,

You said, "the early signals i am getting from my doctors, that with my pc history so far, ht probably wont work for long with me, so its kind of like, what's the point?"
----------
Why would doctors say HT may not work long for you? Based on what? What should I assume about how long HT may work for me ?

Thanks,
Jerry
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