Compiler--update

Hi guys. Mel here. I am still traveling. Taking the red eye tonight and should be back home recovering from the trip tomorrow.
In a nutshell: failed surgery, failed SRT, did well on HT but after a 9-month HT vacation, PSA started to take off. End of HT vacation. But before resuming HT, I went to Mayo and did the C11 Scan. They found the PC in one external node.

Now, I can do surgery (I chose not to -- lots of scar tissue) or radiation. One more far-fetched bite at the curative apple!

IMRT would be the traditional methodology. This would be to the lymph nodes as my SRT was to the prostate bed only.

But Dr. Lam really felt IMRT should be my choice. He puts my chances of a lasting remission as 25%. More importantly, I consulted at length with Dr. Hamstra. He is a superb RO at Umich, highly recommended (including by Mark Moyad). Anyway, in my situation, after my HT vacation, after about 9 months, my PSA took off and recently my PSADT was 4-5 WEEKS. Not good. Hence, it is HIGHLY likely that my PC is beyond the single node (with relatively small amount of PC) identified by the C11 Scan (as an aside, Mayo will do it with a PSA over 1.5 but they prefer > 2.0).


Some folks were strongly suggesting SBRT. I would rather do that (5-7 sessions rather than about 25 for IMRT to the nodes). But the feeling was IMRT would be appropriate (SBRT is best if we knew the PC was in one or two or three nodes for sure and a high probability that it was nowhere else). Once again, controversy on this choice.



Yes, with this disease, everybody has their own opinion and one can get pulled in a variety of directions. At some point, you have to make a decision. My decision is to follow Lam's and Hamstra's suggestions. They both advocate hitting many nodes, not just the one bad one (due to my short PSADT and hence the very high probability that it is in a greater area than the one node -- in fact, it may be beyond the field and my IMRT could be fruitless but with a 25% chance...I'll try it).

If I do radiation, it will be at Umich, 125 miles away. So, I would probably stay there during the week. I am hoping to wait until my semester ends (I teach) in mid-May. This will depend on my next round of tests. If HT appears to be working well, I can wait until mid-May. If not, we have another discussion, but probably IMRT much sooner. I would have to stop working.

As an aside, Cheryl and I got to meet with Lupron Jim.

Jim -- a pleasure meeting you. We had a nice lunch together. Jim had an 11:30 AM appointment and mine was at 1:30. Perfect timing.

This has been a wonderful vacation. Our daughter is (finally) engaged after a 5-year romance. We met her beau's family (we had previously met his father). My son and his kids also joined us. We had a wonderful time.

I wish PC would not interfere -- but this is the new normal (not so new -- it's been 5+ years!)


OK, just a quick update.

GO LIONS


Mel

Mel -

Well, if IMRT is the way you go, you certainly know there are a number of us here who have gone that route and can advise, not to mention using the forum Search function to get all kinds of good information about it.

As a mathematician, you certainly understand that a 25 % probability of success is not all that encouraging, but did the docs have any suggestions for upping the odds? (Diet, exercise, supplements, etc.?)

Why do they think the pca would remain in the lymph node for this long a period of time, especially with a psadt of 4 to 5 weeks. I would accept the fact that your pca is incurable and that it will be in your system some where upon autopsy. As you well know, there are multiple tx's to keep PCa at bay for decades especially for someone who responds well to the tx's. { that would be you}. There is a irony that I hope you don't mind me pointing out. You have " fully expected" all of your treatments to fail even prior to receiving them. Yet, some what like Charlie Brown, you continue holding the ball for the extra point, and keep going for it. Its like you never seem to have confidence in your decisions, but keep hoping. On one hand, I admire that , but on the other hand, it makes no sense to me. I almost feel the 25% figure is thrown in to give you hope when they don't believe that figure at all. All of a sudden we have all these breakthru's in curative treatments that was never there. If it was systemic , it was by definition not curable. Now I see all these different avenues opening up for a cure, yet, I only hear it here, never see anything definitive anywhere else. Lotsa contrary studies. The whole intermittent HT has been around for 3 years at best. Don't misunderstand, unless by choice. Pca will never be cured, just by having one snipe hunt after the other, in the hope they will find it. It will be cured when they discover the mechanism of cause, not when they have one or small tumors in a bag, that the latest imaging device has managed to discover. I mean, when post op path{not yours, but for discussion} says a lymph node is cancerous. Why not just make it SOP/ZAP/ASAP. Why?...Because it will not make any difference, unless by some miracle of timing , it just got there, took a snooze and did not go beyond the pale. 25% is poppycock. Please no wailing and gnashing of teeth, folks Its just a thought, verbalized. We are all of age here.

To be fair Mel, there are a number of folks on this forum who often sound like they know more than the MDs and have the answers. I often wonder if guys from this forum go back to their respective docs and tell them what they should do based on information garnered at Healing Well... and do they do it?

Mel, as I said the post was thoughts verbalized. if my thoughts make no sense to you, so be it. No hidden agenda here. I like parades and don't like rain on parade day. But the rain could care less….

Mel, I hope only for the best for you and everyone for that matter,but damm this is a…. FORUM!

Mel, you have certainly done your homework and picked outstanding doctors. Sounds like your plan is sound and well worth following. I continue to wish for the best...a lot of guys have won big pots with a lot lower odds than you are getting!

Jim

Hey Mel. If you do end up staying in Ann Arbor during your treatments, let me know. I live, and work, only about 30 minutes from there. It would be fun to meet up, I'm sure.

I had 50.4 Gy to my my pelvic lymph nodes, all of them, at the outset of my RT due to a nearly 40% chance of undetected LN involvement. They were identified and targeted through the CT scan for my IGRT mapping. That way they avoided as much baking of innocent bystander tissues as possible. I seem to recall they gave a 10 mm margin around the nodes due to their possible movements. No side effects from that aspect of treatment whatsoever, though it's only been 16 months since completion, and radiation can develop issues a good deal later than that.

sheepguy said...
To be fair Mel, there are a number of folks on this forum who often sound like they know more than the MDs and have the answers. I often wonder if guys from this forum go back to their respective docs and tell them what they should do based on information garnered at Healing Well... and do they do it?

Sheepguy, actually I did do something similar, but rather more cooperatively. I asked, and took, questions from the forum and presented them to the doctors for their position on them. It was generally true that the docs knew of the questions and had decent-sounding reasons for why they wanted to do what they wanted to do. I never "told them what to do", but I did appreciate having input here that helped me ask more knowledgeable questions. Great to have a bunch of folks with first hand experience to bounce the doc's plans off of, too.

Jerry

Sounds like a good trip Mel and happy for your daughter. Sorry about the Lions.
Michael

Compiler,

All the best. Its not good news; but you are still here and until you decide "enough-is-enough" stay on the curative path.

Logos makes a 'few' good points, it is just a Forum. My URO used to say don’t believe a thing you read in forums, always confer with a Doctor; and challenge them, they’re not perfect.

Sorry Mel,
Sucks for sure. When I read the experiences of some of my PC Bros, it often makes me think of what one fellow I sometimes read often says: It's always systemic. IOW, by the time it can be detected and diagnosed, there are almost guaranteed to be at least a few cells out roaming around in the system somewhere, and they must somehow be dealt with by the immune system. I won't say who this guy is to avoid any side debates about who is a quack etc, but sometimes I think his opinion is at least interesting. So since he believes that, he is not a big fan of surgery or even RT.

Now I think at the least his idea may be too generalized, by not considering things like gleason and staging and PSA at diagnosis etc. it seems to me that if caught early enough, and considering those factors just mentioned, it does not have to be ALWAYS systemic or if it is there can be a light enough load that the average immune system can handle those travelers. And it seems to me the statistics on cancer free survival rates of high % for 15-20+ years after RP at least for low to medium risk cases indicate that- at least for all practical purposes- it is not always systemic.

But still, especially for the high risk guys, I do sometimes have to ask myself if he might not be right. If he is right, only finding a systemic solution will really give that cure.

Sorry if this is just some stupid rambling. Wishing the best and huge luck for you. May you be in the 25%.

Mel,
I dont log on too much any more and when I do it is usually to update and run. It sounds like a great trip with many options opened up to you. Congrats on the new son in law to be. Mine moved my daughter to Florida a week ago and I miss them and my grand-daughters. I might like to have a scan like that some day. Happy new year. Todd

Best of luck Mel!! You know what's best for you! Information in, keep the good stuff, bad stuff out!

Cheers, Doug