rising PSA 51/2 years post radical prostatectomy

Billybumps

I was 43 years old when I was originally diagnosed in 2003. I will be 49 next month and it appears that my cancer may be back. I had a radical prostatectomy June 2003 and I thought I was done with this demon inside me. I am so frustrated. Will this ever go away? I am going to Memorial Sloan Kettering Cancer Center in NYC, to consult with a radiation oncologist, on Feb. 10 to find out what my options are. Most of the stuff I read concerning PC refers to men who were diagnosed at an older age. Most of the studies were done with men who were diagnosed at age 60 or more. There is nothing that I have seen that indicates the prognosis for anyone diagnosed at age 43. I realize that PC is a relatively slow growing cancer and that this will not kill me now, but I wonder if I will make it to enjoy retirement with my wife in 13 years, when I will be only 62. I am so angry. I feel like I am now in a foot race to try to stay ahead of this thing before it finally catches up with me.

tpelle

Capsule contained?
Billybumps: Very sorry to hear that the demon may be back. What are the indicators? Was the cancer in 2003 determined to be capsule contained? What were your PSA and Gleason at that time? You've had six good years; you'll have many more.

Billybumps

tpelle said:

Capsule contained?
Billybumps: Very sorry to hear that the demon may be back. What are the indicators? Was the cancer in 2003 determined to be capsule contained? What were your PSA and Gleason at that time? You've had six good years; you'll have many more.

My PSA when I was diagnosed
My PSA when I was diagnosed was 5.5 and my post surgery Gleason was 7 (4+3), cancer on both sides of my prostate. The margins were clear, Lymph nodes negative, seminal vessels negative. The biopsy had indicated that there was perineural invasion, so I don't know if that means that there was capsular penetration. When I spoke to my urologist about it at the time he said that it was nothing to worry about and had no significance on my prognosis. When I see the oncologist on Tuesday, I will have alot of questions for him.

2ndBase

Billybumps said:

My PSA when I was diagnosed
My PSA when I was diagnosed was 5.5 and my post surgery Gleason was 7 (4+3), cancer on both sides of my prostate. The margins were clear, Lymph nodes negative, seminal vessels negative. The biopsy had indicated that there was perineural invasion, so I don't know if that means that there was capsular penetration. When I spoke to my urologist about it at the time he said that it was nothing to worry about and had no significance on my prognosis. When I see the oncologist on Tuesday, I will have alot of questions for him.

My Prostate Cancer
PSA was 24 Gleason 9 at age 52. Dx was maybe 2 years. I am 57 now and though it is still in me I hope to live at least 10 more years. Take the radiation and hormone therapy only if your condition warrents it and you will live a very long time. There are a lot of side effects so do not take treatment if you cant handle the effects. mostly get all the stress out of your life and only do things you enjoy in the line of work and play. Remember you have the power to decide what will work for you and do not let anyone else, especially a doctor force you into something you dont want. Best Wishes. Mark

mike36

Frustrated with cancer at 43
Man I know how you feel. There may be hope for a retirement at 62 after all. I was first diagnosed just a few days after my 49th birthday. I will be 63 next month and I just retired March 31st last year. I don't plan to go into all the numbers now but after my prostate surgery in July that same year, July 13, 1995, my PSA came back after 9 months and it started tripling a short time later. I was very depressed to say the least. Since that time I've been through a trip to Mexico at the American Biologics, intermittent hormone treatment, external beam radiation, and for 3 or 4 years now consistently on hormone treatment. My PSA was 3 when I started this hormone treatment and we got it down to a non detectable. I got this idea one day that everyone must get a shot every 3 months and I couldn't understand why. If you are 3 feet tall or 8 feet tall it's the same dose and every 3 months. When I would go back for my next shot I was still cooking from the last one. One thing I know is that when they burn you out, then its all over and you have used up your last line of defense. I told my urologist I wanted at least 6 months between shots. He really didn't like this idea and we settled for 5 months. So for the last 3 or so years I've been taking it every 5 months. My PSA has been at 0 consistently. He shook his head the other day about what we were doing and I ask why. He said this is not the way it was supposed to be done. I reminded him of our good results and he agreed with me. Just take every thing one day at a time and keep your lines of defense in order. No one except God knows what lies a head for us. We might be old guys before we kick the bucket. Try to enjoy every day in the meantime.

Judge

mike36 said:

Frustrated with cancer at 43
Man I know how you feel. There may be hope for a retirement at 62 after all. I was first diagnosed just a few days after my 49th birthday. I will be 63 next month and I just retired March 31st last year. I don't plan to go into all the numbers now but after my prostate surgery in July that same year, July 13, 1995, my PSA came back after 9 months and it started tripling a short time later. I was very depressed to say the least. Since that time I've been through a trip to Mexico at the American Biologics, intermittent hormone treatment, external beam radiation, and for 3 or 4 years now consistently on hormone treatment. My PSA was 3 when I started this hormone treatment and we got it down to a non detectable. I got this idea one day that everyone must get a shot every 3 months and I couldn't understand why. If you are 3 feet tall or 8 feet tall it's the same dose and every 3 months. When I would go back for my next shot I was still cooking from the last one. One thing I know is that when they burn you out, then its all over and you have used up your last line of defense. I told my urologist I wanted at least 6 months between shots. He really didn't like this idea and we settled for 5 months. So for the last 3 or so years I've been taking it every 5 months. My PSA has been at 0 consistently. He shook his head the other day about what we were doing and I ask why. He said this is not the way it was supposed to be done. I reminded him of our good results and he agreed with me. Just take every thing one day at a time and keep your lines of defense in order. No one except God knows what lies a head for us. We might be old guys before we kick the bucket. Try to enjoy every day in the meantime.

Mexico
Mike,

Last Friday I was diagnosed with PC. My PSA had risen from 3.7 a year ago to now 16. A byopsy resulted in the finding of a Gleason Score of 3+4=7 overall. The local urologist recommends IMRT. I will get another one or two opinions, hopefully from MD Anderson for one. My Texas-based health policy carrier has denied coverage for any treatment for anything urological. It's criminal. Did you go to Mexico because treatment was less expensive? How did you make this decision, please?

Judge

tetech

Judge said:

Mexico
Mike,

Last Friday I was diagnosed with PC. My PSA had risen from 3.7 a year ago to now 16. A byopsy resulted in the finding of a Gleason Score of 3+4=7 overall. The local urologist recommends IMRT. I will get another one or two opinions, hopefully from MD Anderson for one. My Texas-based health policy carrier has denied coverage for any treatment for anything urological. It's criminal. Did you go to Mexico because treatment was less expensive? How did you make this decision, please?

Judge

Non-insurance davinci Urologist (Robotic RP)
For surgery, Dr.
Mani Menon in Michigan gives discounts to out-of-pocket payers and is very good.
Vattikuti Urology Institute
Henry Ford Hospital
1 Ford Place
Detroit, MI 48202
1-800-HENRYFORD (toll free 1-888-881-1117

tetech

Have you always been getting the ultra-sensitive test that reads to 0.01? I was told that <0.01 after two years meant a 94% chance it would not recur, but your experience has made me wonder if my chances are that good.
We have one man in our 12 person PCA group who went to USC cancer center to get additional surgery to remove the metastasized pca from his bladder and 14 lympth nodes. This appears to have "cured" it, the PSA is under 0.01 now after about 10 mo. I would opt for this if I get a recurrence (I am just 45, PSA undetectable 2 years after da vinci).
A prostascint test and a 10-tesla EndoRectal MRI at UCSF may also locate the remaining cancer. A more sensitive alternative to prostascint is available outside the US (I believe in Holland), and they have estrogens that we don't have here anymore. In the US, Evista is being experimented with when triple androgen blockade stops working.
Dr. Steve Strum in Oregon Stephen B. Strum, MD, FACP Medical Oncologist specializing in PC has a book "a primer on prostate cancer" and has a P2P (Physician to Patient) email list that you can write in to or/and download all the back issues, paste them into a word processor, then use the edit-find feature to locate key words if you don't want to read it all. His patients, including my dad, do very well with testosterone & androgen hormone blockers including Avodart. Dad is now a patient of Dr. Schulz & Dr. Lam in Marina Del Rey, they added Ketoconazole as his PSA was still above about 0.1 during ADT.
PomWonderful is a good grade of pomegranate juice that I get in the costco refrigerated section. I get Langers when they are out. Green tea, tomato paste and broccoli are also very good against pca as well as Turmeric with peprine, I also use Ginger. I may try carrot juice. Helpful websites include:
http://www.ustoo.org
Prostate Cancer News You Can Use
http://www.ustoo.org/Prostate_Cancer_News.asp
P2P mailing list
P2P@prostatepointers.org
http://www.prostatepointers.org/mailman/listinfo/p2p

More PC websites:

Resource Kit for Making Prostate Cancer Decisions
http://www.ustoo.org/newpatientkit

Prostate Pointers
http://www.prostatepointers.org

Us TOO International Prostate Cancer Education & Support Network
http://www.ustoo.org

Prostate Cancer Research Institute (PCRI)
http://www.prostate-cancer.org/