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How to know if I can get HDR as a monotherapy

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Posted 12/29/2012 3:33 PM (GMT 0)

I have just about decided on Brachytherapy for my treatment of PCa and would like to have High Dose Rate (HDR) as a monotherapy.  I know of several places that offer brachytherapy and say they use both HDR and Low Dose Rate (LDR).  Before I decide on going anywhere I would like to be assured that they will do HDR on me as a monotherapy.  I am not going to use a combined approach.  I can’t afford to go to several places just to learn they don’t think I am a candidate for HDR as a monotherapy.  I haven’t found any place that will discuss it on the phone.  Does anyone know how I can find out without going to several places?

 

The particulars for my PCa are:

Served in Viet Nam 1969 to 1970 (Gotta love Agent Orange)

Diagnosed in 1999 (at age 49) with “a single focus of PCa – too few cells to Gleason score.  PSA was 8.2 prior to the biopsy.

1999 – 2012.  PSAs checked regularly and bounced around from 1.1 to 7.7.  Free to totals were 11, 8, and 12 when the PSA was checked and over 4.  Several negative biopsies – a couple times PIN was discovered.

Sep 2012 (now age 62) – Last Biopsy was positive.  Two cores out of 12 were positive.  One had <5% involvement and the other had 550% involvement.  Both were Gleason 7 (3=4).  The core with 5% also had PIN.  There was one other core that had PSAP.  All positive cores were on the right side.

 

Anyone have any ideas???

 

Thanks and have a great New Year!! wink   

David

Posted 12/29/2012 4:47 PM (GMT 0)
datadavid -

If you have not already been welcomed to the list, then welcome.

As we say here, sorry you have to be here, but this is a great place to come to for excellent information and great support.

I'm sorry I don't have any information to give you about HDR (I'm certain there are others here who will weigh in and offer some good advice to you on that) but I'm responding as a fellow veteran and Vietnam veteran in particular (I was also there 1969-l970). There are a number of us Nam vets here on the list, and I know we will all welcome you.

I'm responding to your post just to make sure that you are indeed aware of service benefits available to you as a Vietnam veteran who has been diagnosed with prostate cancer. I am going to assume that you are already aware of them and have probably already applied for them. If you have not, the benefits are very good, and as a Nam vet with PCa, you automatically qualify for them. Do look into them if you have not done so already. But NOTE: you need to make application for them (at a local VA office) BEFORE you begin your treatment. If you do not, the benefits are mostly still available to you, but your application process will have to be retroactive and therefore much more complicated.

If you want more information on the benefits, respond and I can provide you with a link that I posted on this list a while back that goes into more detail about them.

In the meantime, again, welcome.
Posted 12/29/2012 5:04 PM (GMT 0)
81GyGuy, Thanks!! Yes I am very aware of the VA benefits. I get most of my care at the VA hospital. Unfortunately the only option the VA hospital (here) offers is surgery and IMRT. I have an appointment to see my urologist/oncologist/surgeon in January. He is a great doc but I am not sure I want to go surgery route. If that is my only option I may just continue on with Active Surveillance. That would actually be my preferred "treatment". I want to see if the VA will "fee basis" me out to a local provider.   Where were you in Viet Nam? I started my military career in 7th Air Force in Viet Nam and ended it in 7th Air Force in Korea. Loved every minute of it.   Thanks again!!   David
Posted 12/29/2012 5:46 PM (GMT 0)
David -

I was an army First Lieutenant in the Signal Corps. My unit was the 579th Signal Company (I was XO), 86th Signal Battalion, attached in commo support to the 25th Infantry Division, headquartered at Cu Chi in III Corps.

I agree with you that it was a remarkable place to be at a remarkable time in our country's history. So many things about that experience that have affected our lives in so many ways over the years.

I noted right away in your first post your reference to Agent Orange. In my case, one of my more significant memories from Nam, and one that has become even more significant the more I think about it, was the day there that I led a portion of my platoon across an area near the base camp that was very barren and dead-looking. It was a space a few hundred yards across and maybe a quarter mile in length. There was no way around it so we had to cross it. We moved across it very quickly (you never wanted to be out in the open for very long in Nam, as you know) but long enough to breathe in any dust or anything that might have been there. Did my men and I breathe in some of the AO toxin which may have been used there and caused the devastated area, and which dust may have settled into our lungs and has come back to poison us with prostate cancer now these decades later? I imagine you have had the same kinds of thoughts from your days there. I guess neither of us will ever know for sure, but the possibility of it stays on my mind and probably on yours as well.

As I noted in the earlier post, there are some more Nam brothers here on the list (gunfighter, are you there?) who would be happy to greet you as well and give you their own thoughts on how the Nam experience still affects our lives even today.

One thing about us Nam vets, we're fighters. Back then we fought the VC and the NVA. Now we're fighting the PC, and, by golly, we're gonna win this war!

Again, welcome to the list and do let us know if there is any other information we can provide you with.
Posted 12/29/2012 7:52 PM (GMT 0)
David,
Since you have been diagnosed, have your local country VSO (Veterans Service Office) submit your claim to the VA ASAP..Benefits will be effective the date of submission..The Lieutenant provided you with outstanding advise. Regarding "seeds", find out what hospital you will be using and doctor and have a letter submitted to your VSO regarding "fee paid basis"--he should submit this letter to your VA primary care provider and the VA patient advocate..Both your pcp and the chief medical officer of the VA facility will have to approve your request..Although I had private insurance, I had my treatment on a "fee paid basis" at my local hospital and walked daily for my treatments. I had no intention of living for 9 weeks at a VA facility about 300 miles away..
My 1st request was disapproved, but my 2nd was approved when I mentioned that my wife had MS and that I was awarded the "bronze star" fighting for the US of America and not the VA..Please remember that you pcp will have to approve your request and have the chief medical officer approve it also--if you have a good VSO it shouldn't be an overwhelming problem!!
I was a company commander/convoy commander in 11 corps and ran convoys daily from the S China Sea through the central highlands to AnKhe and Pleiku while being sprayed frequently by both the NVA and crop dusters in the AnKhe and Mang Yang passes (ambush alley)..In 1 year my group lost 289 vehicles seriously damaged or destroyed---1968 was not a good year!
Bill
Posted 12/29/2012 7:53 PM (GMT 0)
Dave,
I agree with the Lieutenant--since you are diagnosed with PC, get your paperwork submitted to the VA ASAP..I used the county VSO (Veterans Service Officer) to submit for my benefits. In addition, I typed a letter to him for "fee paid basis" and he submitted it to my doctor at the VA and the patient advocate although I had private insurance..My 1st request was disapproved but my second was approved when I mentioned my wife had MS and I was awarded the "bronze star" for fighting for the US of America and not the VA....I wasn't about to have IMRT 300 miles away and live there for 9 weeks...The end result was that I walked every day to my hospital and had radiation daily and the VA paid for it..I could have used my HMO insurance but I figured the US Army did it so they could pay for it!!
I was a company commander in 11 corps and ran convoys daily from the South China Sea to the Central Highlands to AnKhe and Pleiku traversing the AnKhe Pass and Mang Yang Pass (Ambush Alley). In 1 year my group lost 289 vehicles destroyed or severely damaged while being sprayed frequently by both the NVA and crop dusters--agent orange....No, I don't think about it!!
Your doctor and the chief medical officer at your va medical facility will have to approve your request for seeds--good luck! Maybe Y Yooper will chime in--he's our expert on "seeds".
Bill
Posted 12/29/2012 9:39 PM (GMT 0)
I undergo HDR brachy at UCLA in about two weeks. I am NOT having it as a mono therapy, but I know they will do it as a mono therapy. (Not sure if you're anywhere near the west coast.) Here's their website page that specifically addresses HDR brachy for prostate cancer and under heading 4.1 it discusses "who qualifies for mono therapy." http://radonc.ucla.edu/body.cfm?id=212.

Michael
Posted 12/29/2012 10:18 PM (GMT 0)
datadave,
It is very unlikely that any reputable doctor doctor would tell you you are a candidate for mono therapy without examining you and looking at your biopsy report. On the surface it appears that you are.
Unfortunately the biology of this disease will dictate the best treatments and not personal preferences. Don't get stuck on one form of treatment, but look at all of them in light of the size and location of your cancer. I had combo treatment and suffer no side effects 4 years out.
I retired from the Army in '70 with a 40% disability from Nam and now have a temporary 100% for PC. Your disability starts the day you apply for it and is retro to that date even though it may take a year or more to get it; so if you haven't yet filed do it now with the help of a VA rep.
Good luck,
JohnT
Posted 12/30/2012 12:42 AM (GMT 0)
John T and Gunfighter,
Thanks for the advice. I have filled out my paperwork and have been 100% for a while.

I probably had a much different experience in Viet Nam than you all did. I was Air Force and was stationed at Tan Son Nhut AB in Saigon (and as far as I am concerned it is still Saigon despite what the commies call it). I was 18 when I went there and knew everything - I got back and when I was 20 and didn't even have a clue as to how much I didn't know. Sounds strange but I enjoyed my time there. In all my assignments I made up my mind before I shipped out that I would enjoy my tour. My worst assignment was in the Azores, Portugal and it was only bad because I went stupid and married m y ex-wife. She is long gone in more ways than one.

Thanks in particular about the advice on fee basis. I am still seriously considering Active Surveillances.

Thanks again. Talking about Viet Nam brings back some good memories and some not so good. But I survived and that is the important part of any tour.

Cheers.

David
Posted 12/30/2012 1:27 AM (GMT 0)
The best info regarding HDR mono-therapy id www.cetmc.com.   JohnT is giving you great advice regarding treatment.   Don't presuppose what is needed before you consult with a few specialists.

Posted 12/31/2012 4:31 AM (GMT 0)
datadavid - good to hear you're narrowing down your choices, good deal. Regarding your question on HDR as a monotherapy - both MichaelT and JNF gave the advice I too would recommend, if you can get to the CET Cancer Center at UCLA / Dr. Jeffrey DeManes that would be your best bet based on all of the research I did. No one can tell you if monotherapy would be an acceptable approach without a full diagnosis of you and your PCa stats and from what I found the CET is "the best" in HDR.

I don't believe you've mentioned where you live, but again if possible I really would recommend a trip and appointment to the CET. For what it's worth during my research I actually had set up a meeting with Dr. DeManes (I live in S.E. Wisconsin) but after finding the CPC and meeting with their staff I decided to be treated there (less than 2 hours from my home) and ultimately cancelled my meeting with Dr. DeManes.

Continued best wishes for you as you continue your journey.
Posted 1/1/2013 2:27 AM (GMT 0)
Update:
My doctor e-mailed me today said and he was putting in a consult to Radiotherapy (at the VA hospital). I want to talk to them to see if they will send me somewhere to get brachytherapy (all the VA offers here is IMRT).


Happy New Year everyone and best wishes!

David
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