Is It Me or the Norm?

Travelingman · Posted: Thu Oct 15, 2009 10:31 am Post subject: Is It Me or the Norm?

Thanks to all of you on this forum & a lot of reading, I have educated myself a bit about PC. I go to this forum daily to see if there are updates to the threads I am following. I was quite scared 4 years ago when I first became aware of my high PSA. Through 4 years, 4 biposies, & a PSA that continued to rise, I tried to keep informed. Now, I have decided on Robotic surgery. All of this leads to my question, am I typical of your experiences in trying to find out as much as possible? I've talked to a couple acquaintences that are having prostate problems & 1 is not questioning anything his doctor says even though the things he quotes his Dr. on seem unusual at the least. Another friend's father died of PC & he has problems but he won't even see a Dr. So, are we the norm or the exception? In addition, I want to thank you guys for giving so much time to the rest of us to help us as we go through this journey. One of the posters, SRtimmons even called me to give me help in preparing for the next few weeks. Then there is Replicant who takes the time to soothe new posters while helping them find resources to answer their questions. You guys are great & so are the supportive wives!
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

Replicant · Moderator Joined: 01 Nov 2006 Posts: 744

I think there's a spectrum. Look at the study at http://www.cfpc.ca/cfp/2000/VOL46-2000-PDFs/SEP00%20PDFs/vol46_SEP00_research_1.pdf for example. Most newly diagnosed men want at least the basics about the disease and treatments, but there is some variation about what we want to know, how much, and when.

Can you recap your situation when you have a chance, maybe in your signature?

I'm sure everyone will want to hear from you about the surgery, and we all wish you well.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

robyn · Regular Joined: 11 Oct 2009 Posts: 25

Travelingman, you are right about the people on this forum--it does seem to collect those who really want to make the best choice for themselves in their particular situation.

We were in the group of people trusting the doc and not really questioning or seeking out other opinions. We had surgery scheduled for the end of Nov. We still think the doc is a good one, but he doesn't have the robotic experience that many others do. After delving into the Walsh book and finding the wealth of info on this forum, we have backed off, canceled the surgery and are looking at other options, finally realizing that we DO have time to find the right treatment.

Good luck w/ your surgery, and please do post about it. When are you scheduled?

Robyn

Travelingman · Posted: Thu Oct 15, 2009 1:48 pm Post subject: Re: hi

[quote="Replicant"]I think there's a spectrum. Look at the study at http://www.cfpc.ca/cfp/2000/VOL46-2000-PDFs/SEP00%20PDFs/vol46_SEP00_research_1.pdf for example. Most newly diagnosed men want at least the basics about the disease and treatments, but there is some variation about what we want to know, how much, and when.

Can you recap your situation when you have a chance, maybe in your signature?

I'm sure everyone will want to hear from you about the surgery, and we all wish you well.[/quote]
Replicant,

My situation is as follows, my father was diagnosed with prostate cancer in 1991 at the age of 77 & died from bone cancer at the age of 79 in 1993. At the time, PSA was not in use or not available at Veteran's Hospitals where he was treated. As a result, I began tracking my PSA at the age of 41 in 1992. PSA progressed as follows: 1992 1.3, 1999 3.0, 2001 3.4, 2005 6.0. The 2005 PSA prompted my primary dr. to send me to an urologist. He told me that a 6.0 could mean cancer. I had a biopsy which was negative. 12 months later in 2006 my PSA was at 9.3 & I went under another biopsy which showed some PIN. In 2007 it was up to 9.9 & I had another biopsy which was negative. In December 2008 my PSA was at 13.2. In April of this year it was up to 18.0 & a 4th biopsy was done on June 15TH. This biopsy showed a Gleason of 3+3 & 5% cancer in one of the 12 cores. My Urologist recommended External Beam Radiation due to the small extent of the cancer but put surgery as a close second. I spent 3 months thinking about what to do, reading on this forum & reading a book by Dr. Torrey on it. I gradually decided to go for surgery instead based upon my readings. As I see it, surgery can be followed up by radiation & hormone therapy if necessary whereas radiation leaves no other alternatives than hormone therapy if the cancer is still there. My Uro told me that I am the kind of guy who could go on WW because he felt I would be diligent in getting PSA's every 3 months & biopsies every 6 to 9 months but he still felt I should go for treatment rather than WW. If my PSA were not 18, I would probably go the WW route. However, there is a window that can close if the cancer escapes my prostate. At 58 years old in good health, I hope for a long lifespan. My reasoning also includes the facts that I can recover from treatment easier at 58 than 68 & that it seems that most guys that go through all types of resources & specialists seem to end right back where they started & get some sort of treatment. In addition, my prostate will be examined after removal & the extent of my cancer can more accurately be determined. I am going to my local hospital on Oct. 26th for Davinci Robotic with a surgeon from my uro's group. He worked under Dr. David Lee at Univ. of Pa. & did hundreds under him. He has done over 120 on his own since coming to this practice & 2 of guys I know were operated on by him. This surgeon actually met one of my friends at 3 am at his office to take care of a problem. I feel that a local hospital may not treat me like a number & that I only have to go a few miles if I have a problem.
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

Gordy650 · Regular Joined: 31 Oct 2009 Posts: 10 Location: NJ

Travelingman- I learned many years ago, when I was innocent and my mother died of cancer, that nobody cares for or is as interested in the patient's wellbeing, as the patient himself.

I have incurable metastatic PCa and read everything I can find re: my situation. I check out every med and Tx which is suggested and I check out every doc to whom I'm referred.

I don't understand people who blindly follow the first doc they see.

Travelingman · Posted: Sat Oct 31, 2009 4:07 pm Post subject: Re: Is It Me or the Norm?

[quote="Gordy650"]Travelingman- I learned many years ago, when I was innocent and my mother died of cancer, that nobody cares for or is as interested in the patient's wellbeing, as the patient himself.

I have incurable metastatic PCa and read everything I can find re: my situation. I check out every med and Tx which is suggested and I check out every doc to whom I'm referred.

I don't understand people who blindly follow the first doc they see.[/quote]

Gordy650, welcome to the forum, I've only been a member a short time myself. Good luck with your research. Do you care to share your story with "the PCa Brotherhood"? How did you find your cancer?
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

Gordy650 · Regular Joined: 31 Oct 2009 Posts: 10 Location: NJ

Travelingman- OK, you asked for it.

Was first Dx in January 2005. I knew something was wrong when I was peeing 10 or 12 times a day at work. PSA was 26.5, Gleason 4+3 and was started on Zoladex and Casodex. Had many "second" opinions, including Alan Partin at Johns Hopkins (remember the Partin Tables?) Finally decided on HDR brachy.

All was fine until rad onc decided to do CT scan of pelvis to check things out. One pic caught the very bottom of my left lung and showed a nodule there. CT scan of my chest showed numerous nodules on both lungs and bone scan showed lesion on pelvis. Had biopsy of first nodule here in Northern NJ. Pathologist had never seen cells like mine before but assumed 90% chance of PCa mets.

Along the way I discovered the reputation of M D Anderson and asked for an appointment there. Sent slides ahead and and when I arrived, doc assured me that it was incurable, mutated, metastasized PCa and had been seen there 2 or 3 times before.

All this time PSA has remained undetectable!

Have since been in a clinical trial in Nyack, NY, suggested by MDA doc, which I failed. Then decided on chemo locally with Taxotere and Prednisone. Had 4 cycles of chemo and recent CT and bone scans show slight progression of the disease.

Visited MDA 3 weeks ago and their scans showed the same progression. Doc told me he has nothing to offer me at this point and asked me to return in January.

My only hope at this point is for Provenge to be approved quickly or for the pharma companies to come up with something else.

And so it goes.....

Gordy650 · Regular Joined: 31 Oct 2009 Posts: 10 Location: NJ

Oh, and BTW, I have no ill effects of the cancer. Neither look nor feel like I have cancer, except for effects of chemo.

Travelingman · Posted: Sat Oct 31, 2009 4:54 pm Post subject: Re: Is It Me or the Norm?

[quote="Gordy650"]Travelingman- OK, you asked for it.

Was first Dx in January 2005. I knew something was wrong when I was peeing 10 or 12 times a day at work. PSA was 26.5, Gleason 4+3 and was started on Zoladex and Casodex. Had many "second" opinions, including Alan Partin at Johns Hopkins (remember the Partin Tables?) Finally decided on HDR brachy.

All was fine until rad onc decided to do CT scan of pelvis to check things out. One pic caught the very bottom of my left lung and showed a nodule there. CT scan of my chest showed numerous nodules on both lungs and bone scan showed lesion on pelvis. Had biopsy of first nodule here in Northern NJ. Pathologist had never seen cells like mine before but assumed 90% chance of PCa mets.

Along the way I discovered the reputation of M D Anderson and asked for an appointment there. Sent slides ahead and and when I arrived, doc assured me that it was incurable, mutated, metastasized PCa and had been seen there 2 or 3 times before.

All this time PSA has remained undetectable!

Have since been in a clinical trial in Nyack, NY, suggested by MDA doc, which I failed. Then decided on chemo locally with Taxotere and Prednisone. Had 4 cycles of chemo and recent CT and bone scans show slight progression of the disease.

Visited MDA 3 weeks ago and their scans showed the same progression. Doc told me he has nothing to offer me at this point and asked me to return in January.

My only hope at this point is for Provenge to be approved quickly or for the pharma companies to come up with something else.

And so it goes.....[/quote]

Wow, what an experience you have had! PCa seemed to attack you in a very stealthy manner after you went through the seed therapy. I hope that the Provenge will be approved & that you continue to feel minimal effects of the cancer as I imagine the effects of the Chemo are really tough. Your situation is a lesson for all of us to be very viligant. You were & still suffered even though you have put so much effort into your case. Thank you for sharing your experience with us.
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

Gordy650 · Regular Joined: 31 Oct 2009 Posts: 10 Location: NJ

Sorry- I forgot about the 5 weeks of external beam just before the HDR brachy. Chemo brain, fer sure.

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