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So what else should I really do next?

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Posted 3/15/2011 12:30 AM (GMT 0)
Casey,

Thanks for the input, and yep, if you don't mind, post that guidline again. My natural preference if I had to go out of my local area would be Duke. Their reputation is undisputed in my region. Were it not for the severity of the radiation damage to my bladder/bladder neck, a very reknowned reconstructive surgeon was considering a complex surgery for my previous ailment, unfortantely, it was too damaged to be considered.

The fact that Duke takes insurance up front is a plus too. So far, my BCBS, or should I say, my wife's, has been excellent in every step of this journey. My meds are all but free, my physical therapy is 100% paid with no co-pays, and my urostomy supplies which run $300 a month are also paid 100%. Can't complain.

Sorry to hear about what your wife is dealing with, that's a tough ride. So like Sonny, you have a lot on your plate too. My wife has been plagued all her life (from age 6) with bouts of the various types of hepititis, her liver is her weak spot.

David
Posted 3/15/2011 1:15 AM (GMT 0)

Thanks for your comment.

I'm planning a college visit to Duke with my daughter (she's a HS junior).  I went to high school about 8 or 10 miles away (Cary, NC).

Purgatory said...
Thanks for the input, and yep, if you don't mind, post that guidline again.

Here's the link to the free online Patient-version of the Guidelines for PC:  LINK 

The clinical version is really the same, but requires (also free) online registration HERE.

All of the Comprehensive Cancer Centers take insurance.


Posted 3/15/2011 1:29 AM (GMT 0)
Thanks for the link, I know Cary quite well. Wow, my only daughter will be 30 this year, having a hard time taking that in.
Posted 3/15/2011 1:45 AM (GMT 0)
My daughter turned 30 on the 9th

Mel

Posted 3/15/2011 1:54 AM (GMT 0)
Even though she has been married for going on 7 years, she is, and always will be a daddy's girl. She's just on loan to my son-in-law.
Posted 3/15/2011 11:37 PM (GMT 0)
Asking again, for any of my local Upstate SC guys, there are about 3 of you here, do any of you have a good local medical oncologist you can reccomend. Can't be associated with Cancer Centers of the Carolinas. Spartanburg, Pickens, Greenville, Oconee, or Anderson counties would be prefered.

Thanks,

David
Posted 3/16/2011 1:57 AM (GMT 0)
David,

If you eliminate all the oncologists associated with the Cancer Center of the Carolinas the only other good center in the upstate is the Gibbs Cancer Center in Spartanburg. In 2009 when I had to decide how to be treated for PCa there was a radiation oncologist there who had an excellent reputation for high dosage brachytherapy. I wanted to consult with him but the nearest appointment I could get was too far out for my comfort range. But I think he may have left for greener pastures. My wife's best friend, Karen, was treated for lung cancer by a medical oncologist at the Gibbs Center who himself had prostate cancer some years before so I would think he would be knowledgeable about the subject. Karen thought the world of him but unfortunately her condition was such that there was not much long-term hope, though she did have a long remission that allowed her to do some travel to foreign countries before she died. If you are interested I will be happy to get his name for you.

BTW, Karen was very angry at me for deciding to have my seed implant operation at a center in Florida. She thought I would be better off having it done at the Gibbs Center by the high dosage brachytherapy specialist. Sadly, Karen died two days after my operation in November 2009.

Sancarlos




Purgatory said...
Asking again, for any of my local Upstate SC guys, there are about 3 of you here, do any of you have a good local medical oncologist you can reccomend. Can't be associated with Cancer Centers of the Carolinas. Spartanburg, Pickens, Greenville, Oconee, or Anderson counties would be prefered.

Thanks,

David

Posted 3/16/2011 2:54 AM (GMT 0)
SanCarlos,

THank you, my friend. I was not aware of that particular facility. Will check it out right away. Was also told there was some good doctor in Anderson, perhaps part of Am Med Hospital System, but don't have a name.

Hope you are still fairing well. From looking at your latest PSA, I would trade my latest of 1.24 for your .005. I am jealous.

David, the Easleite
Posted 3/16/2011 2:57 AM (GMT 0)
This came from Gibb's web page:

about Gibbs Cancer Center
At Gibbs Cancer Center, it is our mission to bring these things to the people we care for. Using innovative cancer treatment and groundbreaking research, we have achieved this goal with countless patients and families. But we know good care means more than good medicine. It means integrating cutting-edge treatment and clinical research with comprehensive education and prevention programs. And doing all of this with a compassionate spirit. That's why our dedicated team of professionals has been recognized time and again for bringing the highest quality of care to our patients. For more than 70 years, our cancer program has been committed to eliminating this disease and improving the way we provide care.

We are a nationally recognized cancer treatment and research facility associated with the National Cancer Institute Community Cancer Center program, the Medical University of South Carolina and the M. D. Anderson Physicians Network. We are a proven leader in providing effective cancer treatment through advanced technology, professional expertise and an exceptional level of personalized care. Our oncology program has been recognized by the Commission on Cancer of the American College of Surgeons as offering high quality cancer care.
Posted 3/16/2011 5:15 PM (GMT 0)
David,

I am at the very least fortunate that there have been no nasty unexpected symptoms associated with treatment. Everything that has happened has been pretty much in accord with the script.

That said, I still drew a very bad hand with G9, PSA of 12 and PCa in six of six core samples. The calculators and nomograms give me less than a 10% chance that the PCa was confined to the prostate so the risk of treatment failure remains great. However, at the very least it does appear that my PCa is a strain that is highly sensitive to androgen deprivation, and this in itself is a pretty good thing. Then again, Lord forbid, maybe it is one of those strange types that is insensitive to androgen deprivation and produces no PSA!!

But as my oncologist has said, the major objective at this point is not to cure the PCa, though we hope for that, but to limit its growth and spread so that ultimately we die from something else other than prostate cancer. Coming up on age 67 in a couple of months I figure that my chances of that are not bad.

Sancarlos


Purgatory said...
SanCarlos,

Hope you are still fairing well. From looking at your latest PSA, I would trade my latest of 1.24 for your .005. I am jealous.

David, the Easleite

Post Edited (Sancarlos) : 3/16/2011 11:25:50 AM (GMT-6)

Posted 3/16/2011 6:42 PM (GMT 0)
You are doing very well, Sancarlos, of which I am most thankful. Yours is a good example of someone with terrible stats that is holding is own quite well. PC is such a fickled creature at the least. Still appreciate your tip and will be looking into it shortly.

David
Posted 3/16/2011 6:59 PM (GMT 0)
Purgatory: I sent you an email via my gmail account. I hope you got it.

MikeS.
Posted 3/16/2011 8:40 PM (GMT 0)
Mike, as of 4:40 PM EST Wednesday, no e-mail from you.
Posted 3/16/2011 8:46 PM (GMT 0)
David,

I have not chimed in because I don't have any experience here to share. But remember that I'm on your side, whatever side that turns out to be.

Posted 3/16/2011 9:09 PM (GMT 0)
This I know, 142, thanks friend
Posted 3/16/2011 9:53 PM (GMT 0)
David,

It occurs to me that you might also want to consider the Winship Cancer Institute associated with Emory University in Atlanta since the institute has an excellent reputation and at about two hours driving time is not that far from where we live. A trip down there and back in a day is very easy.

http://winshipcancer.emory.edu/

Sancarlos
Posted 3/16/2011 10:44 PM (GMT 0)
Thanks, while I avoid Atlanta like the plague, its in my possible range for someone that is really good on the other end.

David
Posted 3/17/2011 1:13 PM (GMT 0)
Purgatory: I sent it again at 9:03 this morning 3-17-11 via my gmail account.

I am sure you have done this but it is worth repeating. Have you read Walsh's book on Surviving Prostate Cancer? I was just looking at it again last night and so many of the things that he discusses regarding recurrence of the disease reminds me of your situation. Walsh had some practical guidelines to suggest following in a variety of instances when primary and secondary therapies are not effective. If you have not read it in a while, you might revisit it again and carefully go through it from the surgical portion of the book onward.

Anyway hope you get my email. Let me know if not and find another way to send it.

Mike S.
Posted 3/17/2011 5:01 PM (GMT 0)
Mike,

Got your e-mail now, will be reading it. I had read Walsh's book cover to cover a full year before my dx, it was my original "bible" on the subject, and I still use it as a reference work.


Thanks
Posted 3/17/2011 9:07 PM (GMT 0)
<<do any of you have a good local medical oncologist you can reccomend>>

David,

Three visits with Medical Oncologist Gary Spitzer and, so far, I'm pleased. Dr. Spitzer is associated with Upstate Oncology Associates, 135 Commonwealth Drive, Greenville, SC 29615. His office is in the St. Francis Hospital downtown complex - phone (864) 546-3699.

One thing I particularly like about Dr. Spitzer is that he provides a full written post-visit report. I was initially put-off when he constantly spoke into a small hand recorder during my visit. But, after the first report arrived by mail, I came to appreciate this unique Dr/Patient service approach.

Also, don't forget that Medical Oncologist Dr. Charles "Snuffy" Myers is just up the road in Charlottesville, Virginia some 6 hours by car.

Mitch in Powdersville, SC

Posted 3/17/2011 10:31 PM (GMT 0)
Mitch, great tip, I was not aware of Dr. Spitzer, but love St. Francis Downtown, had all 8 recent operations there.
Posted 3/17/2011 11:24 PM (GMT 0)
<<I was not aware of Dr. Spitzer>>

David,

Dr. Spitzer is also an in-network approved BCBS physician.

Mitch in SC

Posted 3/18/2011 12:09 AM (GMT 0)
Keeps getting better by the minute, Mitch, thanks for a good local lead. Ive been 100% satisfied with all treatments at St. Francis, including hospital stays, at home nursing and rehab, their oncology rehab department, ostomy nurse, etc.
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