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Well, . . . just heard from my urologist about an hour ago

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Posted 4/28/2011 3:39 PM (GMT 0)
Just diagnosed with Gleason 6, 2 of 12 positive. That's all I know right now. I am most upset by the fact I am 61 years old, and up to now, have been in "perfect" health. Never smoked, very occasional drinker, not overweight (5'7" and 150 lbs). My "perfect" health record is now over. PSA 4.3

Had already been reading this site, as well as several others in anticipation. My initial leaning is for Proton Therapy at Bloomington, Ind., but I am going to carefully consider all options before making final decision. Would welcome to hear from anyone, but especially those who have undergone Proton Beam Therapy at Bloomington or elsewhere.

Thanks.
Posted 4/28/2011 3:41 PM (GMT 0)

Welcome to the site and sorry you have to be here...

Hang tight for others to come along and give you some feedback.

Posted 4/28/2011 3:55 PM (GMT 0)

Welcome, Bummer, Best of Luck.  Lots of great info here.

Hero

Posted 4/28/2011 3:58 PM (GMT 0)
Sorry you got those news. On the good side, you're at a very early stage and have all of your options open. Best of luck with whatever you decide.
Posted 4/28/2011 4:17 PM (GMT 0)
Skeeter --- sorry that this PCa is ruining that otherwise perfect health record. However, you have every reasonable expectation that between what you learn here, and in talking to your doctors, etc., that you'll come up with the appropriate treatment and in a couple of years this will just be a blip on your ongoing perfect health journey.

I hope you'll keep posting and let us know how you're doing.

I'm sorry I can't help you with your question about Proton --- no doubt others will be along who can help with that.

Sheldon AKA Sleepless
Posted 4/28/2011 4:25 PM (GMT 0)
Skeeter, I'm glad you found us. You are doing the right thing evaluating all the options available to you. With your Gleason 6, low PSA and only 2 cores you have a lot of time and consultation with various doctors. Good luck.
Posted 4/28/2011 4:48 PM (GMT 0)
Sorry to hear you'll be joining us.

With a gleason 6, it's very possible you will maintain your perfect health.

I'm impressed you got the phone call from your urologist.  Mine wouldn't talk to me on the phone.  I had to schedule another appointment just to get the test results. 

Posted 4/28/2011 4:51 PM (GMT 0)
The GOOD news is 97% of the Gleason 6 guys live to die of something else regardless of what form of treatment they choose. The only advantage of proton over photon is, hopefully, reduced side-effects. But todays linacs are so precise, side effects have been greatly reduced.. Some will dispute even that..One thing for sure, it costs a lot more so be sure to get pre-approval from your insurance company if you decide on that method of treatment...Read a couple of books to broaden your knowledge base. Dr Walsh and Dr. Chodak have written good ones..
Posted 4/28/2011 5:08 PM (GMT 0)
Skeeter, you also appear to be a prime candidate for HDR monotherapy. It comes with an even better success rate than external beam radiation and with less side effects. Check the information at www.cetmc.com by Jeffrey Demanes, the HDR pioneer, at UCLA.

I had HDR, but also had IMRT as i am more advanced than you appear to be.

As was stated before, proton is not an improvement in curative treatment and may not offer any real advantage over photon IMRT, but it sure does cost a lot more and sounds sexy.

Take your time and check out everything.
Posted 4/28/2011 6:26 PM (GMT 0)
Skeeter - Your story is much like mine, other than I could loose a few lbs. As others have said, welcome to the club that know wants to join. I probably can't be much help to your question, but for what it's worth I underwent DaVinci in Indianapolis and am recovering well.
Posted 4/28/2011 10:29 PM (GMT 0)
To everyone who has replied, thanks. And in case anyone was wondering, I didn't intend or mean to make light of the diagnosis by complaining about my otherwise "perfect" health. I guess that was just my way of responding to the reality of the diagnosis and the realization that "yes, it can happen to you." My wife of 32 years has had many medical problems that have required numerous hospitalizations and surgeries. I have always been the caregiver and support person. Now she gets to reciprocate. Yes, I am luck to have found it at this early stage. Gleason 6 was my hope if it came back positive, and for that I am grateful.

My family doc and my urologist are both longtime friends, so I did appreciate the telephone call. I have also spent some time today talking to my family doc as well. We'll see where it goes.
Posted 4/28/2011 10:46 PM (GMT 0)
Glad you found us, but sorry you had to. It's wonderful to have such a fabulous forum, but it sucks to have to keep welcoming new members.  As I'm sure you know, there are many treatment options and many, many members here that can offer all kinds of support.  Let us know how we can help you in your journey to a cancer free tomorrow.

Doting

Posted 5/1/2011 6:06 PM (GMT 0)

JNF said...
Skeeter, you also appear to be a prime candidate for HDR monotherapy. It comes with an even better success rate than external beam radiation and with less side effects. Check the information at www.cetmc.com by Jeffrey Demanes, the HDR pioneer, at UCLA.
.

Hmmm, I checked that website and HDR monotherapy sounds pretty impressive. As of now I am still leaning toward PBT if my insurance will pay for it. I live in central Ky., so I am wondering if anyone knows of facilities closer to me than UCLA that does HDR monotherapy on a regular basis?

Thanks, JNF, for that info!
Posted 5/1/2011 7:57 PM (GMT 0)
I do have a history of psa readings for the past several years, but I haven't gotten from my family doc yet. In general, it has been building slowly (over past 7-8 years) from 2.0 to 2.5 to 3.0 etc. Last test 18 months ago was 3.7. This February I had a 4.6, took 30 days of cipro, and tested again, the result being the 4.3. If I were a little older I might consider AS but I am a otherwise healthy 61 with some history of longevity in the family. Thus, I feel I do want to do something.
Posted 5/1/2011 8:38 PM (GMT 0)

skeeter

Welcome.  It is very overwelming when you hear the words you have PC.

First you need to slow down and weigh your options

I was Dx at 50  with PSA 6.3 and Gleason of 3 + 2 = 5

That was 10 years ago and surgery and other procedures have progressed so much that you will probably have less complications than I have had in the 10 years post.

I did not know about the forum until this last January and the guys and women have been very kind and informative.

You will do fine. 

Good Luck and Take  your time to make a decision which you and if you have a partner will be sure of.

Tom of Ohio

Posted 5/1/2011 10:12 PM (GMT 0)
Skeeter- Dr. Timothy Chen practices at St. Clare's Hospital in Dover and Denville, NJ. I believe he taught the HDR brachytherapy procedure at one of the most prestgious teaching hospitals in New York City before practicing in New Jersey. Not too long ago (six or eight months, I believe) both ABC Network News and The Star Ledger, the largest newspaper here in Northern NJ, did stories about an incredible HDR brachy procedure he performed on a woman who was about to die from an inoperable lung tumor. I can't say enough good things about Dr. Chen as a radiation oncologist, an oncologist in general and as a caring human being.

My e-mail address is available here at HW if you would like to contact to me.

-Les
Posted 5/1/2011 11:47 PM (GMT 0)
Les-Gordy glad to see you return to this forum....you are needed here and know alot of things on PCa that you can share, you are to humble in my opinion. Please jump into the discussions on other matters, I hope others noticed your back on the forum.

Keep up your works, fellow warrior!
Posted 5/2/2011 6:39 PM (GMT 0)
Skeeter,

There is another HDR pioneer in Detroit named Alvaro Martinez in Royal Oaks Michigan. I have to believe that there are HDR radiology oncologists and urologists in Louisville, Indianapolis, Nashville, or some area closer. Where in Kentucky do you live? My wife is from Kentucky.

I live in Atlanta and had a couple of choices for HDR. I am happy to ask my urologist and rad-onc for any referrals they can provide in your area.

Jack
Posted 5/2/2011 6:52 PM (GMT 0)
Skeeter,

Welcome the club that nobody wants a membership too. Sorry to hear about your results.

Its sounds like you've been researching already - this is good. Information has made me feel somewhat more in control (or empowered) during the short amount of time I've known that I have PC.

I've not researched your treatment option much, but have researched IU Medical Center (Indy - not Bloomington), Barnes-Jewish Hospital, and Vanderbilt because they are all within 3 hours of my home in Indiana. I've spoken with doctors (or doctors staff at each location), and felt the best about Barnes.
Posted 5/23/2011 1:48 AM (GMT 0)
Hi Skeeter,
Sorry to hear about your problem. I also have the same problem and was wondering if you had the proton beam treatment and why did you choose that if you did? I am still trying to choose either this or surgery? Both seem to have the same sucess rate and the same chance of getting ED. The only difference is you can have salvage radiation after surgery and you can have HDR after rediation and you can have Cryo freezing after either treatment and there is also harmon threaphy you can have after either treatment. My numbers seem to be about the same as yours Gleason 6 and PSA 10.1 only found a small amount in 2 out of 12 spec.What did you decide on?

Thanks Fancy
Posted 5/23/2011 2:55 AM (GMT 0)
Before you sign up for proton or any other treatment, check with your insurance company...Ask that the billing clerk gets "pre-approval" before you start treatment to avoid unpleasant surprises..
Posted 5/23/2011 9:36 AM (GMT 0)
Well, here is where I'm at concerning my treatment choice. I have been to the Proton Therapy Center at IU in Bloomington, Indiana for a consultation. My wife and I were very impressed with the facility, and more importantly, the people. Everyone was friendly, helpful and understanding. I spent over an hour with a radiation oncologist who not only explained the proton treatment option, but my other treatment options as well, including everything from AS to surgery to brachytherapy. She explained exactly how proton therapy worked, and the possible side effects. She also insisted that if I am treated vis proton or some other form of radiation, I must first have a colonoscopy (otherwise scheduled for next year) and she also wanted a second opinion as to the pathology report. Very thorough.

Insurance. I am insured via the Commonwealth of Kentucky's self-insurance program for state employees, which is administered by Humana. I am already in the appeal stage, which is being handled by the Proton Center. They recently had another person with the same insurance and were successful on appeal getting him approved. I am hopeful that I will be approved also. I do have a back-up plan of being treated with "conventional" radiation, i.e. IMRT/IGRT. Although I found the idea of HDR brachytherapy appealing, my doctors advised against it due to a history of mild urinary problems that they felt would be exacerbated by brachytherapy.

As I have said before, I do not want to do surgery. I am scared of the potential side effects, including the possibility of permanent incontinence. Yes, radiation has risks as well, but I am prepared to accept them in lieu of the incontinence possibility. This is not a knock on surgery. It is simply my personal and individual response to the treatment options out there after having studied them thoroughly.

I am hoping to actually start treatment within the next 45-60 days. I will try to keep a running post of how it goes once I get started.
Posted 5/23/2011 9:39 AM (GMT 0)

JNF said...
Skeeter,

There is another HDR pioneer in Detroit named Alvaro Martinez in Royal Oaks Michigan. I have to believe that there are HDR radiology oncologists and urologists in Louisville, Indianapolis, Nashville, or some area closer. Where in Kentucky do you live? My wife is from Kentucky.

I live in Atlanta and had a couple of choices for HDR. I am happy to ask my urologist and rad-onc for any referrals they can provide in your area.

Jack

We live near Elizabethtown/Ft. Knox area.
Posted 5/23/2011 4:57 PM (GMT 0)
Skeeter,
Just make sure that any radiologist you use has at least 250 procedures on PC. It takes this many procedures for a radiologist to get good at it. Radiating the prostate is different from radiating other cancers because of the irregular shape, large area and closeness of other organs. For seeds and HDR brachy you want a doctor that has done at least 500.
JohnT
Posted 5/23/2011 5:31 PM (GMT 0)
Hoping the appeal process will give you the result you are wishing for. My father was treated with Proton back in 1997 at Loma Linda California with a Gleason 6. He is still doing well 14 years later.

Larry
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