PSA is back and Agent Orange issues

I just got my lab results prior to an appointment coming up on Thursday with my uro. PSA is 0.23 - up from 0.04 six months ago. This is after five years of being undetectable following SRT and then becoming detectable again two years ago (see signature) but never higher than 0.05. I don't know what my uro will suggest on Thursday, but I'm assuming a re-test.

I've never had bone scans before, but is this the time to do one to establish a baseline so that previously broken bones don't get confused with possible future mets?

Also if any Agent Orange veterans have any suggestions or opinions I welcome your comments. I've been on low partial disability for residuals of previous treatment. I've called my town's veterans agent (a retired 30 year E-9 Marine) asking to see him before my Thursday doctor appointment to ask about changing my VA disability status. My plan as of now, unless he or others suggest differently, is to bring a VA DBQ (Disability Benefits Questionnaire) form with me to my uro appointment on Thursday and ask him to submit it to the VA either now or after he's satisfied that I am no longer in remission. He's the guy I've mainly seen for the past 14 years and has my full PCa history, though going forward I may be seeking out a medical oncologist - I have one in mind at Dana Farber.

Jim

Jim, I can't remember, are you a Viet-Nam vet? From an Agent Orange aspect, the VA requires that one be "boots on the ground", even if one was on the ground for even 1 day (as per your service records), there are other circumstances allowed, that include certain Navy and Air Force situations.

If this is the case, your PC and your Viet-Nam service is all you need to be included at 100% disability with the VA.

Or I may be missing the point of what you are asking, just trying to help

I only became P&T as of May of this year. Prior, being 100% Agent Orange, I qualified for full dental regardless. Came in handy, when I had all that dental work done because of the radiation rotting out my teeth and did jaw bone damage (not related to PC radiation), the cost of the 30 oxygen treatments, dental surgery, and 2 sets of dentures, etc. were estimated close to if not over 100K. Never would have happened without the VA.

When I had my final C&P in May, that gave me my P&T rating, the examining doctor told me that they didn't care about my PSA number post treatment as long as it was over .10. He considered it metastatic and non-curable (though my number was way up high XX.X range. Now I will never have to be examined by the VA again.

There were many state of SC benefits awaiting me for the P&T rating, most of them I have claimed, some I don't need or want.

So to be clear, aside from my rambling, for the dental, you don't need the P&T rating, you need the 100% rating for PC, which you said your PSA was .23, over double the required min. In theory, it should be a cut and dry case for you. But considering the years I fought with the VA, I would hardly be the one to guarantee you an easy path.

What kept me going, was that I knew I was right all along with my service records, etc. The VA here in SC had records showing me being in the service when I was still in High School, and had no idea where I was stationed half the time. Many of my records were destroyed in that huge file of vet records many years ago, and in the appeal process, the appeal board said that my account of events and my precise chronology was more believable than the flawed records the VA had access to.

If you know you are eligible and correct, keep on fighting them

Jim,

I am 99% sure what I told you is correct per VA regs, but hoping "81" sees this threads and perhaps verifies, or corrects what I told you. He knows far more about the regs and standards than I do. I'm repeating what my experience with the VA was like.

It was a huge relief, actually cried, when I got the letter from the VA confirming my final P&T rating. Seriously and literally. It was the end of a hard fought fight.

One huge benefit, and I didn't know it was coming, was that my wife qualified for ChampVA health insurance. 100% free. She was able to drop the expensive Blue Cross she had to keep from her work. She now has better insurance then when she was paying for it. And as long as we don't get divorced (no plans after nearly 43 years, lol), she gets to keep it, even if I pass away first.

And in SC, I no longer pay any property tax, they exempt my house and up to one acre of land for life. Got 2 perm. Disabled Vet tags for our main cars, and no more property taxes on the car, and the tags never expire, even upon my death. My wife is entitled to, I believe, 45 months of free college if she chose to go back to school, though at our age and the fact that she will be retiring as a nurse late next year, unlikely to use that benefit.

The state benefits for P&T vets vary a lot from state to state.

Good luck to you ahead. You deserve your P&T for sure

Been away a couple of days, just seeing this thread.

Bohemond, from what I know everything that everyone has said here so far is very correct. (We've got some pretty knowledgable folks here on the forum when it comes to VA matters!).

I can only think of maybe a couple of things to add, and I say them below, but I think the most important thing mentioned so far is what you yourself said:

"I've called my town's veterans agent (a retired 30 year E-9 Marine) asking to see him before my Thursday doctor appointment to ask about changing my VA disability status."

Very good move. This person may just be your new best friend in what he knows and what he can do for you. Sort of like hiring a really good lawyer in a legal case. A good VSO knows the VA system as well as a good lawyer knows the legal system, and he will be able to do so much for you. Getting a good VSO to help you is probably the best single move you can make right now

So you probably don't need to find a VSO at this point, as it sounds like you may already have a good one lined up. But if you need to, there are sites that do help in locating them. This one looks good, and is probably typical:

nvf.org/veteran-service-officers/

In the latter part of your OP, the plan you describe for proceeding with the DBQ and involving your physician also sounds like the best way for you to go at this point. It would be nice if the doc you have in mind has experience in completing a DBQ, but it's a simple enough form to do. And he can submit it to the VA for you, or complete it and give it back to you for you to send on to the VA yourself. (That's what I did in my case). You probably already have access to this, but here's information on the form on the VA site:

www.benefits.va.gov/compensation/dbq_disabilityexams.asp

(Follow links there to get to the DBQ that is specifically for PCa).

In your OP you raise the issue of whether to have your uro or your oncologist complete the DBQ. It might be good to have the most qualified one in PCa matters (likely the oncologist) do it, since, although most of the questions on the DBQ form involve only "yes-no" type answers, there is one box on it for "Describe History," in which the completer is asked to go into detail. The more knowledgeable physician can likely answer it better.

Here's something else I found that is useful as a reference tool: the official government disability ratings code:

www.ecfr.gov/cgi-bin/text-idx?c=ecfr&rgn=div5&view=text&node=38:1.0.1.1.5&idno=38#38:1.0.1.1.5.2.105.56

(Scroll down to "Genitourinary System" and follow links. Gives percentage values for determining the "worth" of various disabilities, and is used in calculating eventual degree of disability).

As I've said in other threads, I'm hardly an expert in VA matters, but I do make it a habit to keep reading veterans' sites on the web to learn what I can, and I regularly visit the VA site just see what's new.

One thing about the VA site search engine, though. I'm afraid I have to say that I have always found it to be rather user-unfriendly, with even simple searches resulting in complex, often confusing results displays. (The VA needs to work on it). One tip I can pass on is to use the "site:" qualifier in this situation. That is, if you want to search the VA website (www.va.gov) for something, do it in Google with site qualifier, as:

agent orange site:va.gov

(which bypasses the VA on-site search engine, but still pulls up pages within the VA site).

There are a number of useful veteran-assistance sites out there which can prove useful. Here is one in particular:

vets.yuku.com/

that I have always found very helpful. I have been mainly a lurker there for some time, with an occasional post or two, and I vouch for them as a good, reliable source of information on veterans' matters.

Finally, some other useful tools:

For estimating compensation benefits:

www.benefits.va.gov/COMPENSATION/resources_comp01.asp

and specifically for Agent Orange vets:

www.benefits.va.gov/compensation/claims-postservice-agent_orange.asp

and an especially good general source on the VA site:

"Federal Benefits For Veterans, Dependents and Survivors."
www.va.gov/opa/publications/benefits_book.asp

Googling "VA state benefits" (no quotes) brings up a number of useful sites. This one is typical::

www.military.com/benefits/veteran-state-benefits/state-veterans-benefits-directory.html

Whew, I guess that's enough for now. As I said earlier, you guys are really pretty sharp yourselves in gathering this kind of handy veterans' information, and I just hope I've been able to add maybe a little bit more.

81,
Much thanks for your comments and all the links. I'm pretty sure I've got all the right balls in the air at the moment, but I will read through all of the links later today. I believe there is no such thing as too much information, especially when dealing with the government, or for that matter an insurance company. Given that I already have an established disability and am in the VA medical system and, unlike at my initial claim I don't have to prove this time that I really was a boots on the ground sailor, I'm expecting this claim will move through the system easily. But as always - I'll hope for the best but prepare for the worst.
Jim

glad for you 0311, only wish mine had gone that easy, also makes a difference of what state you live in, some make it easier than others.

after getting turned down twice in SC, when I said I was appealing to the main VA in Washington, DC, the local VA got ugly with me and cussed me out on the phone, and told me that I had zero chance of winning on appeal. Boy where they ever wrong, and my case was quickly and overwhelmingly won by me. My local county office, however was, and still is, great with all my other VA matters. My mistake was filing on my own, should have let the county office handle it for me.

The elected county officer here is a woman, E9, who served 3 tours in Nam in a MASH type unit, amazing person, and she loves all of us vets here in my part of SC

Good luck, Jim

David (Purgatory), Thanks and best of luck to you also. As a sailor, I know we always defined ourselves by who were hackers and who were the non-hackers. Our Marine brothers have "Semper Fi", but I guess we sailors weren't as good at Latin. The best I can offer is a Navy "well done" to a hacker.

Rick,
I'm not sure from your post if you were Navy or other branch, but it doesn't matter. If you were boots on the ground in Vietnam you are covered by the VA for PCa and a number of other Agent Orange related diseases. Also recently the government extended Agent Orange coverage to personnel who flew on or maintained aircraft that sprayed Agent Orange. I live in Massachusetts and many of these aircraft were handed off to the Air National Guard here and elsewhere after Vietnam and were shown to have measurable contamination even years after returning from Vietnam.

In my own case, I expect to be upgraded from partial VA disability to full disability after my uro's DBQ is processed. And for that I'm grateful. Though I'd be even more grateful for not having "treatable" but "incurable" cancer.

My head is still kind of spinning at the moment. I knew this day was coming. But after two years of measurable, but nearly insignificant PSA, I'd kind of thought I'd have a year or two of slowly ramping up before I'd have to consider moving on to treatments that will have a greater effect on my than the disease itself has had over the past 14 years.

I'm now pretty much beyond sleep for several days and am cramming what I can about moving on to new doctors and new treatments. I'm pretty sure I'll be calling Dana Farber for an appointment with an MO and to begin discussions about what to do next.

I know I will be around for quite a few years to come, unless I step in front of a moving bus, but I'm also now thinking about all the stuff piled up in the house and in my workshop, and in my file cabinets, and all the things my wife needs to know about networks, passwords, website management, financial and tax matters, my role as a non-profit director and treasurer, etc. yadda, yadda, yadda, if I don't write it all down and store it someplace.

Not to be morbid, but I'm reminded of my father who as a young Army Air Corps staff sergeant in WWII would notarize the wills of equally young pilots as they finished their training and went off to the war. Lucky him. He and his notary stamp lived through the war. Lucky me; I'm here. But it is all really just a roll of the dice.

Jim

Mr. Bill

Boots on the ground anywhere in Vietnam between January 9, 1962 and May 7, 1975 is presumptive of Agent Orange exposure. Boots on the ground includes some Navy personnel who were on vessels on inland waterways. There are also a few other locations or situations that may be presumptive of exposure -- The Korean DMZ, service on C-123 aircraft that sprayed AO, even after those aircraft were returned stateside, etc. Here's a link:

www.publichealth.va.gov/exposures/agentorange/locations/index.asp