Crap, I thought I was cured. Part 2

That's a major bummer. Was the five to ten year prognosis with some kind of intervention or without? As far as selling your business, the next four years should present a favorable economic scenario and if you are going to sell, this would be a good time.

However you might be the type that thrives on this sort of activity despite the stress so you might have an empty feeling without a business to oversee so you will have to consider that factor.

Well, beans. That isn't the news you were hoping for.

The confirmation of recurrence, and more so metastasis, can be even harder to handle than the original news. At least when first diagnosed there's the true hope of a cure or at least durable remission. Upon finding metastasis we realize it's now a chronic situation that will always have to be managed.

One's mind can immediately go to very dark places. The sky clouds over, the sea turns dark, the winds build, waves start coming over the transom and suddenly you're taking on water. However, we do have a beacon of hope, right here on our forum. Never forget about our friend Todd1963. If anyone can remind us that even an advanced metastatic situation can be managed for a long time, it's him. Let that light reach out to you when you're in those dark places!

No one has an expiration date printed on their neck. No doctor can say for you anything definitive about longevity even after metastases appear. There are statistics, median survival times, that sort of thing. But they don't, and can't, know for you.

No doubt the wizards of smart here will chime in on the wisdom, or the futility, of treating initial metastatic lesions as they're found.

Some say yes, doing whack-a-mole will delay progression. Knock out the first metastases to delay development of the next ones. Keep the PSA down by any means possible.

Others say no, the subsequent metastases will appear on the same schedule whether you zap the first ones or not. Early intervention may keep the PSA down a little longer, but that has no real value other than a marker for activity. If the initial lesions are in bone, and causing pain, then zapping them can be helpful. Otherwise there's no benefit.

Having watched a couple of those sparring matches, I'm currently leaning toward the second position. Once metastatic it's systemic, and only systemic therapies can help.

Good luck yarbo, hang in there. We're here to listen.

Have you considered consulting with Eugene Kwon at Mayo Clinic? He treats oligo mets on a daily basis and I would want to hear his opinion before giving up on treatment. The odds may not be great for success but it beats the heck out of doing nothing in my opinion. (I just completed SBRT to one lymph node in New Orleans)
Best of luck.
Woody

Yarbo-

I know it must be devastating to learn that you are not cured, but I'm sure you know that the disease can be successfully managed for a long time.

Unfortunately, the Ga-PSMA-PET scan only shows those metastases that are large enough to be detected - it doesn't show you ALL the metastases that are too small to show up, and there are probably many.

You may be able to have SBRT on the one lymph node met, and if it's in a safe place, why not? (It may not be safe if it is too close to bowel tissue that has already received a large dose - the RO would have to look into it). The SBRT will shrink that lesion and will probably reduce your PSA. Will doing that provide any long-term benefit, perhaps slow down disease progression? Maybe, maybe not. There is no data yet that would allow anyone to judge that.

The important thing is to treat what you can't see. CHAARTED showed that there is NO advantage gained by early use of docetaxel when the metastatic burden is low. The TOAD study showed there is a survival advantage to starting ADT now rather than waiting. There are some clinical trials you may qualify for if you are non-metastatic, but I don't know if they would let you in with a positive lymph node that has only been identified on a PET scan - you can call and ask:

/pcnrv.blogspot.com/2016/12/recurrent-pc-non-metastatic-hormone.html

If you do qualify for the Prostvac trial and you decide to get the LN zapped, you may want to get the radiation first. There is a likely synergy between immunotherapy and radiation.

Thank you everybody for all your fine input.

I fully understand now the issue with treating lymph nodes. It's a gamble for sure and only beneficial I can see if there is any hope for cure. Otherwise why treat only a likely non isolated lesion when you should be suppressing suspected cancer growth within the whole body? Treating metastatic pelvic nodes for cure sounds remote but some docs do seem to believe it's possible and do apparently draw the sentiment from some sort of data. As long as "remote chance for cure" is on the table, its better than no chance at all and I think worth pursuing.

I have heard to people that had pretty aggressive cancer upon diagnosis, even with affected lymph nodes, that had aggressive treatment and are still ok after many years. Charles Meyers is one I believe.

Pelvis node metastasis is seen different than others I am reading and it seems to be because there is some level of hope attached to it.
So by default it seems if I am going to chase down treating the two metastatic lymph nodes I should also be on ADT at the same time. Why risk further metastatic cancer growth when you can simply add ADT to any local treatment attempt. Right?

I had low dose, broad spectrum radiation to the pelvic area (nodes) during my original treatment. Not enough it appears to wipe out cancer cells. I have no local disease to the prostate which got aggressive radiation. If I had the same level of radiation to the lymph nodes I have to wonder if I would be metastatic now?

Is SBRT used in guy's like myself that had previous radiation?

Is there any logic to node dissection? What's that procedure like?

Michael

Hi Yarbo,

You are asking about the lymph node dissection procedure. Here's my personal experience with that:

I had a bit of a different diagnosis at the beginning, with lots of mets in bones and lymph nodes and decided to throw everything I could at that thing. So I started right away with Docetaxel and ADT which brought the activity way down. After about a year there was almost nothing left to see on the scans (including c11 choline pet scan), just one lymph node that was still active.

So I decided to have that lymph node removed. That was a 90 minute operation, the node was in a rather tricky location, it was not possible to do that with minimal invasive surgery. But all went well. After one week I was out of the hospital. The experience wasn't very stressful. PSA fell below 0.01, I though I was about to win the fight.

Three months later the next scan showed activity at another lymph node. That was when I decided to have my prostate removed and at the same time do an extensive lymph node dissection. This time it was a 5 hour operation and afterwards I felt like I had been run over by a truck several times. Took ten days before I could leave the hospital.

So my guess would be that an extended lymph node dissection without the prostatectomy is something in between those two experiences, a serious operation, but given your age it should not be a problem.

After that second operation my PSA was very low, but not undetectable. Scans did not show anything, so it was not possible to continue the whack-a-mole strategy - which, to be honest, has only been partially successful. That's when I started Enzalutamide and with that my PSA dropped below 0.01 for a year.

Again I started to hope that this time I might enjoy a prolonged remission (like our hero Todd1963). But my disease seems to be more aggressive and after one year of peace my PSA has started to rise again and I need to figure out the next steps.

So I can totally understand your frustration, it just sucks when the disease comes back. Looking back it is very difficult to say how much the lymph node dissection has helped to delay the progression of the disease. I guess it also depends on your personal view. I just can not sit here and do nothing. You say "As long as "remote chance for cure" is on the table, its better than no chance at all and I think worth pursuing" and I am 100% with you on that.

So would I do it again? Absolutely! Do I have objective evidence that it made a substantial difference. Probably not.

But in these things I am a simpleton. For me, less tumor mass is better. Plus, there are studies that say that this "cytoreductive approach" does have a long-term benefit.

Listen to your gut, I guess there is not clear right or wrong in your situation.

Now, the question about lifespan. Quite frankly, no one can tell. Each patient is different. But the truth is: We have a very serious disease which has the potential to kill us long before anything else does. And it may well shorten our lifespan considerably. But then again, your completely healthy neighbor might die in a car crash tomorrow. We simply don't know.

At least we do have the privilege that we have received a massive wake-up call to remind us that we will not live forever. And that may help to re-orient our lives and focus on the really important things. So if you feel stressed by the responsibilities of your company and can sell your stake at a price that secures your future that might be a very good thing to do. You obviously built a great company, you can be proud of that and now life has just dealt you a card that you were not expecting. You will need focus and energy to fight this disease and you want to have time to do the things that really matter to you. Again, a very personal decision. I would do it.

Hope any of this helps.

Kind regards, m.

I want to cry. I REALLY WANT TO CRY!

I spent an hour and a half writing a nice post, full of wit, intelligence and commiseration and the darn thing dissapeared on me.

I tried again and it DISSAPEARED AGAIN.

Then again and it DISAPPEARED AGAIN.

WAHHHH!!!!! I'm going nuts.

Anyway, I have to plant my garden. It's the big planting day of the year here for me here in Charleston.

I'll try again later and write in a mother venue then dopey and paste.

This IPad is sensitive too I think to being touched in the wrong places??

Thanks all. Later.

Michael

Yarbo,
I can't offer any better advice on your medical situation that you've already received, but I sympathize also with your dismay at your vanished post.

In the early 80s when hardly any of us used or had desk-top computers I borrowed a TRS80 from my wife's office for the weekend so I could write a 20 page paper for a grad course. Working from my notes I wrote 16 pages on Saturday, saved it and called it a night. I sprang out of bed on Sunday, went straight to my desk and wrote the last 4 pages. Happy that I'd finished and looking forward to breakfast I leaned back and stretched and --- kicked the plug out of the wall. Of course I didn't have the sense in those days to save as I went. I spent the next couple of hours writing those pages all over again.

Best of luck with your treatment.
Jim

Ok, this time I'm typing this in an email to myself, then I'll copy and paste onto my new post. Loosing that post was emotionally taxing.

Bohemond, 30 years later and you still remember the painful memory of loosing all your work on that TRS 80. I can only imagine the moment you kicked the plug out and the feeling of falling off a cliff afterwards! Sh.............t! These events embed themselves deep in the mind. Once upon a time, not too awful long ago, these impressionable and very important to remember life lessons were generated from more tangible events, like stumbling on a bear cave or grabbing an electric eel. It's funny how technology generated pain can feel just as real. For instance a little black dot from a scan on a screen makes me feel the same way I would of emerging over a hillside and suddenly facing an army of barbarians or a pack of wolves. So weird.

Madagascar, thanks so much for sharing your very lucid and clear chronology of your PC experience. That helps much with navigating forward and I'm exceedingly grateful.

I'm not one for projecting hope into the future in order to make current life more manageable as I've always preferred to manage life in the moment, with all its pain and ecstasy than water down the present by praying for a better day. But I'm gonna make an exception to the rule, as I believe there is good reason for doing so. There has been such an accelerated rate of change in research and available treatments of prostate cancer I can't help but project more of the same in the future. It's obviously a race for time and I think (hope) we are well positioned to do everything we can and keep on clawing our way through our cancers to the bitter end til something that hasn't been invented yet is gonna come along and save our asses. My son had Hodgkin's disease and after his chemo around five years he is now considered cured. I have friends that had insidious Hep C and experienced brutal rounds of toxic interferon which did no good other than perhaps stall progression a bit (which in the big picture was probably a good thing and perhaps a good correlation to some of the stalling treatments we are now practicing with advanced prostate cancer). A few years ago a nice, easy to tolerate oral drug comes along and BOOM, they are now Hep C free. Something's gonna come along for us I can't help but believe, it's just a matter of when.

A real potential stall that could challenge this immediate dream is by executive order, the castration of funding towards science and medical research. That would be tragically sad for us all and for society in general.

(Bare with me as I throw a little hooked worm into this little river of ours and make a lame attempt of saving our lives....)

If any body here is connected to the Trump Administration (you ever know) here please pass this on to The President.

"Dear Mr. President. I am sure you want to be remembered as one of the finest leaders America has ever experienced. You know you're a great man, don't you want others to realize the same? Enough with the negative over cuts, the bizarre behavior and further flushing out our already over inflated military. How about doing something positive and endearing like highly funding medicine and becoming "THE PRESIDENT THAT CURED CANCER". We are getting closer all the time and if you act soon YOU CAN TAKE ALL THE CREDIT. Enough of these low ratings. Overnight, you can double your current less than stellar 37% approval rating into 74%. Guaranteed. Show the world what a great leader you are and use your perceived offensiveness towards something productive, like being offensive against cancer."

Enough of that but I had to try, just in case. Haha!

I do have a question.

Was this genome test I did worth anything? I'm not clear on the significance of the findings.

"TMPRSS2-ERG fusion". Tall Allen, do you know anything about this? Anybody else?

I'm planting lots tomatoes today. Here is an official invitation for anybody to stop by in a few months here in Charleston for a nice hit of Lycopene!

Have a great day!

Michael

Yarbo-

What about it? It's a just another risk factor. A problem with genetic tests is that for the most part, all we can do is shrug our shoulders. There are certain DNA repair mutations that may be treatable, but other than that it's really not very useful imho.

fiddlecanoe said...
...Congress needs to pass a new continuing resolution later this month, so now is a good time to share your views.

Not a bad idea, it would be great if it would be helpful.

The political physics drive the wrong actions. For $1 billion, they can send $1000 to a million people, buying a million votes. That same billion could fund a huge amount of research, maybe find curative options, indirectly saving, what, thousands of lives? Tens of thousands? Those saved lives won't result in nearly the amount of votes, the funding isn't even obvious to those saved. Hence, radically smaller payoff.

So, which do you think vote-driven congress critters will do? That's the problem. The CBO confirms something like 2/3, yes two thirds of the federal budget is transfer payments. Think about that. Money taken from taxpayers and given directly to others. Do you suppose any of those recipients vote for smaller government? Nope.

Research, positive medical work, could be transformed by applying a small percentage of that. Sorry, don't mean to be overly political on this forum. But the political calculations are frustrating beyond description.

Thanks Fiddle canoe,

I think I will follow through on your suggestions..

Michael