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When to consult an expert PC Oncologist--Mayo Clinic??

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Posted 1/24/2011 3:26 AM (GMT 0)
OK, I have a question. My current status is: had surgery; lousy pathology (see signature), and SRT is looming. I did consult an expert at Umich, but at this point everything seems to be standard in the sense that SRT would be my next move. I realize I may get a response regarding thinking outside the box, but at this point in my PC, I just want clear thinking inside the box.

But, lets fast forward and assume that I do SRT and SRT fails. AT THAT POINT, I think I would need some guidance. It seems to me that this would be the time to really seek out some expert opinions. I know that HT is the next logical treatment. But is there maybe something else. Also, does one do Casodex first? Also, assuming my PSA was still very low, does one wait for it to go say above 10 or even 20? Or hit it hard right away? What about ADT3? What's the latest thinking on intermediate ADT? But, mostly, maybe something else is out there almost ready for prime time?

Finally, have any of you sought some guidance from the Mayo Clinic? If I get in this situation, it would probably be summer time and Mayo Clinic is probably a 10-12 hour drive from my locale so we can make a nice driving "vacation" out of it (Mall of America, here we come).

Another possibility is the Cleveland Clinic.

So, any experiences, comments, etc.?

Mel

Posted 1/24/2011 5:27 AM (GMT 0)
David:

You haven't missed a thing. I like to think ahead. So far, every test has been worse than the one before.

Just like you are convinced that HT would be a disaster for you, given your record of SE, with my very rapid rise of PSA (doubling time less than 3 months), I don't have a good feeling about the direction this is going.

Also, as I've said, I really do like to think ahead and have a plan in place. This is MY WAY of dealing with this and it has worked well for me. For example, when I did get that dreaded telephone call with THE news that I had PC, I had a plan in place and was able to activate that plan. It would have been difficult to formulate a plan and think clearly after the bad news.

I operate best this way. That's just ME.

So, if someone can contribute an answer to my question(s), I'd appreciate it.

Mel

Posted 1/24/2011 12:24 PM (GMT 0)
I am currently going to the Mayo Clinic for my HT , I also have Robotic surgery there.

I am very impressed with the Mayo and it's doctors, they are very thorough

Posted 1/24/2011 1:37 PM (GMT 0)
Hi Mel,

I like to be prepared in advance too. We do not lose anything by being educated in future probabilities.
Regarding SRT and HT, you know that once recurrence is determined you could have them combined or separately. Recently Dr. Myers made a presentation indicating a higher benefit of having RT combined with HT on a scale of 47% vz 35% with RT alone. However, this info is not particular to SRT but RT as prime (is there any difference?). An important matter in locally advanced cases (your case) is to keep a reliable marker to ascertain success of therapies, which is in our case the PSA. HT will definitively alter the real value of that marker in a RT treatment.
Some doctors double the PSA when patients are on HT, but there is no fixed definition to use those results in statistics to evaluate cancer progress.

Hormonal treatment, Single, Double or Triple blockade (ADT3) methodology continues to be controversial. Again there is no reliable published information on a triple approach benefit vz a single or double. You only would find details on the application at the offices of famous and reliable doctors/oncologists such as Myers, Scholz, Strum, Lam, etc.
You can read about Dr. Myers' practice in his book "Beating Prostate Cancer: Hormonal Therapy & Diet," and you can check about the results of triple blockade after surgery, radiation, or both at Dr. Strum's book "A Primer on Prostate Cancer - The Empowered Patient's Guide, which have a long and expert section with references.
Surely both books focus on HT as the best practice.

PSA after radiation has an erratic behavior. It fluctuates down and then up in a bounce manner before declining to its nadir (lowest level). This can take between 12 and 24 months to be accomplished. The trigger for starting HT in patients of SRT (no prostate) is PSADT once biochemical failure has been established (third rise of PSA after nadir).
In this site (NCCN Guidelines "Prostate Cancer" V.3.2010) you can read about the protocols followed by the professionals as the standard care for prostate cancer.
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Hope the insight is useful.
Baptista
Posted 1/24/2011 1:37 PM (GMT 0)
mgl:

Are you going to Mayo in Rochester, Minn?

Do you see a medical oncologist who specializes in PC (I would assume yes)?

If you are very impressed with your doctor, can you mention his/her name (or email that information to me if that works better)

Mel

Posted 1/24/2011 1:47 PM (GMT 0)
Baptista:

Thank you for your most informative reply.

It sounds like, assuming I start SRT in 5 weeks or so, that I would not really know of a failure for quite awhile. Is this correct? (Say I start on March 1 and finish about April 25. When would we start doing PSA checks? Every 3 months starting AFTER the SRT?).

Regarding HT and SRT, I did ask my doctor at Ford and I also asked Dr. Hussein at Umich. They were quite clear that they do NOT recommend this. So, I will (gladly) go with their recommendations!! Both SRT and HT are scary!

Mel

Posted 1/24/2011 4:09 PM (GMT 0)
Mel,
There is nothing wrong with thinking and planning ahead. The best thing that could happen is to not need SRT to begin with but if you do hopefully the next step will not be needed.
Posted 1/24/2011 4:30 PM (GMT 0)
Mel, I'm way out of my element on the subject matter but maybe not so much on the logic.  You are looking ahead and considering seeing some real experts AFTER failed SRT.  I guess it's not clear to me if you have seen a prostate oncologist anytime along the way so far.

I guess my point is this:  If it was me and I was considering a treatment for a failed first procedure I think I would be seeing the best possitlbe experts NOW before doing ANY additional treatment.  Why do things sequentially when you have the opportunity to look at the whole picture?

Tudpock (Jim)

Posted 1/24/2011 5:36 PM (GMT 0)
Tud:

Yes, I have certainly seen a top oncologist, Dr. Hussein at Umich. We had a long talk a few months ago.

She is the one who said yes to SRT but no to HT for now.

She actually advised doing adjuvent radiation. She also admitted, as Ford said, that it is a grey area. She said they are more aggressive with ART and that for every 100 patients they treat with radiation they estimate that 70 didn't need treatment (ie: overtreatment). Ford advised no RT but watch the PSA and do the SRT if needed. As I said, it's a grey area. Anyway, I chose to follow Ford's protocol (why do such difficult TX if there is a very good chance that it won't be needed).

Well, it now appears that it will be needed.

So, in answer to your question, yes I have seen a specialist. But is things go south I would probably seek out one more opinion before starting HT.

I know some think I am 2 steps ahead. I think I am one step ahead as it as the handwriting is on the wall that the surgery has failed. I'd love to be wrong here!

David, you said "Still pays to put each part in a seperate box so to speak, that way, when overwhelmed, you aren't throwing the baby out with the bath water." Agreed and that's exactly why I am asking these questions -- so that if things go south I am NOT overwhelmed. Obviously, we all look at this in different ways and we all deal with problems/stress differently. Having a plan in place IN ADVANCE for me alleviates stress. WHATEVER WORKS.

Mel

 

Posted 1/24/2011 6:03 PM (GMT 0)
“………It sounds like, assuming I start SRT in 5 weeks or so, that I would not really know of a failure for quite awhile. Is this correct? (Say I start on March 1 and finish about April 25. When would we start doing PSA checks? Every 3 months starting AFTER the SRT?).

Regarding HT and SRT, I did ask my doctor at Ford and I also asked Dr. Hussein at Umich. They were quite clear that they do NOT recommend this. So, I will (gladly) go with their recommendations!! Both SRT and HT are scary!.......... MEL”

Mel,
You are correct. It could take some time until you know if RT has failed or has been a success. There are several cases where nadir PSA is reached on the 4th year, and once there it will stabilize (with low small variations). Nadir PSA could be any number, even above 1. In cases with prostate in place, nPSA could be 3, 4, 5 etc..

PSA can be taken whenever we like but doctors recommend taken it on 3-months periods. I took a PSA at the end of IMRT just for curiosity. My PSA nadir (0.05) was reached on the 13th month pos RT and recurrence was verified on the 29th months. The trigger for HT never come because my PSADT was greater than 9 months but my doctor decided to have me on HT once I got to PSA=1.0, which happen 4 years later. Other doctors I consulted would have waited longer until I would reach a PSA of 5.0 (on simple calculations that would have been on the 7th year pos RT).

You do not need to be scared of SRT or HT. The radiation treatments are done with modern machines very accurate, causing lesser side effects than the old ones. The important will be to have the treatment at the best clinics with reliable radiologists. While RT is done with the intent of cure, HT is a palliative treatment to control the advance of the cancer by keeping it “at bay”. There are cases of guys on HT for long periods of time over ten years. Get the books I recommended in my previous post to educate yourself in HT.
Surely, any treatment have added side effects and you should be aware of them too.
I would recommend you to consult a specialized doctor for each of the treatments.

Wishing you the best.
Baptista
Posted 1/24/2011 6:11 PM (GMT 0)
Mel, I had BCR last March. SRT was recommended by all of the Drs that I consulted with. General consensus was that success rate for SRT in my case was 50% at best. I proceeded under the assumption that I will likely need additional treatment. I saw a medical oncologist at Dana Farber and also had a consult with Dr Myer. I am following Dr Myers program and I am 8 months into one year of ADT3. Unfortunately I won't know if SRT was effective until this summer, but I think that aggressive treatment will be the best for me. Luckily SRT was a non-issue for me, no sigficant SE's. HT is another issue. SE's are annoying, not doable.

I agree with you that now is the time for planning, and the you should get the advice of a PCa specialist is possible.
Posted 1/24/2011 6:27 PM (GMT 0)
There, since my 2 replies seemed to agitate you, instead of helping you, I chose to delete them. I won't answer your posts directly again, unless you personally ask for my opinion.

When you put your thoughts out here, or if you are just thinking out loud, you have to expect the full spectrum of replies.

David.
Posted 1/24/2011 6:44 PM (GMT 0)
Hi Mel,

I understand your way of thinking as it's probably how I think as well. You need to plan for the next next step and the one after that if your next step fails. Not everyone thinks this way, many people like focussing on today and living with what you have right now. No one is right or wrong, everyone handles challenges differently.

But, I think that this situation gives you the opportunity to re-evaluate your current status before diving into SRT. I know you have done the nomograms but maybe it's time to see the oncologist or any other doctor that can help sort out any questions on your current status. E.g. If this is a BCR, where is this cancer likely to be? In the prostate bed, or elsewhere or both? Perhaps you need the help of a specialist pathologist such as Dr Helmut Bonkhoff in Germany to give you more information on tumour markers? Maybe other specialist tests may help you pin these risks down further. As Dr Strum is fond of saying, status begets strategy.

Regards,
An
Posted 1/24/2011 8:43 PM (GMT 0)
Thanks An:

I've consulted the Ford doctor (not really a medical oncologist) and the Umich expert.

They all seem to be saying that SRT is the next step and that it is a crapshoot as we really don't know if the cancer has escaped the prostate bed. They recommend against bone scans and CT scans as with my very low PSA it is so unlikely to find anything.

They also say it definitely looks like a BCR, but then they have their protocols.

Mel

Posted 1/24/2011 8:56 PM (GMT 0)
David:

I am mystified that once again you are removing your posts. I may not agree with a post of yours. As you know I did react quite strongly when you charged me with PROMOTING a supplement. There was no reason to say that, but that's my opinion and it's not necessary to rehash that. Even if a post of yours was upsetting that would still be no reason to remove it, especially after the fact. It's done with. I bear no grudges towards anyone.

I assure you, I appreciate your input and would certainly welcome continued responses on your part. You seem to forget that in general we agree on a lot of this stuff. As I've said, we are all brothers in this fight. But we do have to sift through loads of information (much of it grey area/contradictory) and make our own choices in how we handle and fight this disease.

Let's face it, these are tough times for all of us and we are all handling things as best we can.

I would hope you would reconsider your stance. I may not agree with everything you say (just MOST of it) so as I said I still welcome your opinions. But I'm not going to be walking on eggs, either.

Mel

 

Posted 1/24/2011 10:24 PM (GMT 0)
Mel,

Deciding on a treatment is worse than the disease to treat. Looking into your chronology (signature), your epe indicates that the cancer may have not been totally removed at surgery, but metastasis, if any, would be localized. More precisely, your pathologic stage after surgery is pT3apN0, and your PSADT >6 months.
Based on the PSA best practice guide lines, you are now at biochemical failure and recurrence will be declared once you get to PSA=0.2. The trigger for treatment would then be set and as Dr. Mario Eisenberg (JH) established 9 years ago, “the soonest the best”.

These two pieces of data are crucial in the decision of your next treatment. SRT in your case has demonstrated to be effective (by the statistics ??) in a 92% on a five-year recurrence-free and a 73% on a ten-year recurrence-free survival. This is effective in cases where cancer is localized so that there will be a “target” where to send the rays.
Radiation is not applied with intent of “brush-cleaning” the pelvic area. There are specific points that will be in the isodose planning prepared by the radiologist based on its experience in prostate cancer cases.
The final aim is cure otherwise the treatment would only treat the wound and leave you with the side effects (and an empty pocket).

Hormonal treatment in this setting does not make part of that cure. HT is just a palliative addon treatment that will weaken the cancer cells (killing some by starvation of testosterone) so that the irradiation will do its job easier.
Theoretically, say that if RT kills 100% of the “healthy-baddies” (RT alone), it would kill 115% of “weaker-baddies” (RT + HT). In other words, if the rays miss 15% of the baddies, in the case of “weaker-baddies” it would represent a full 100% job done.
One could say that, in the hands of an excellent radiologist and modern IGRT-IMRT machine, the kill may well be assured 100% without addons.

SRT will cause you side effects additional to the ones you got from surgery, and HT will add some more to the cocktail. Trying to avoid to the lesser extent these effects is a must when considering the type of treatment, the clinic where to treat and in the choice of the practitioner. You will have to learn in living with them all.

I wish these insights help in your researches.
Baptista
Posted 1/24/2011 10:29 PM (GMT 0)
Baptista:

How do you say my PSADT is >6 months.

It is less than 3 months.

Mel

Posted 1/24/2011 10:41 PM (GMT 0)
Mel,

For statistics the shreold is lesser or bigger than 6 months. Your case is worse but still within the less than 6 months established by Dr. Slovin (SKMCC). Sorry my mistake

Regards

Baptista 

Posted 1/24/2011 11:08 PM (GMT 0)
Mel, the neat thing about me, is that you don't have to agree with anything I ever say, that's the beauty of it. But at times, you seem to be aggitated if I answer you in a way that doesn't agree with your sense of logic. Doesn't mean you are wrong, or it doesn't mean I am wrong.

The fact that you are still bringing up the infamous "Promotion" issue shows me that it still bothers you, you even put in all caps, thought that was suppose to mean "anger" in the online world, though I always thought that was silly.

We agree on much, for sure. But you seem to do a lot of "thinking outloud" on HW, whereas I don't tend to do that. My original point (in one of the deleted posts) was that you seemed to be jumping way ahead of yourself, thinking about what to do with HT, when and if the SRT you haven't had fails, and you still don't know that you need. It was that line of logic that my mind found odd.

There's a thin like between being a worry wart and an inquiring mind, but a very subjective line. Since your clams seemed to be steamed, I simply removed my remarks, though I found nothing offensive in them. My fault is probaly since I tend to think literally and take most things literally, I probably answer at times too literally. If so, I am sorry.

David
Posted 1/24/2011 11:36 PM (GMT 0)
David:

I've never thought of myself as thinking out loud, but that is certainly one way to put it. If the shoe fits, I'll wear it.

Again, from my vantage point, there is no need to delete a post.

I actually did delete one of my posts (not to you). When we got the first recent praise of Dr. S., I questioned that. I wrote that it didn't pass my smell test. But, then, it was a first-time poster and in case it was just a legitimate post, I didn't want to throw a damp rag on a newbie. In retrospect, my smell test was accurate and when we got the second such post I didn't hesitate to respond.

Such is life, David. If I have a bone to pick with someone, I'll do so. I hope if I cross the line and become mean/nasty someone will call me out. Once in awhile, we get a little testy, I know. I guess that goes with the territory (I wonder how many cliches I can inject into this post). Believe me, this is nothing when compared to religious and political topics in other groups (nor should it be).

Anyway, enough said. You and I are fine, David. Your support, knowledge, and insight is always helpful and appreciated.

Mel

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