I am currently two weeks post biopsy, and my world has been rocked, as most of you can understand. I have also had the pre-requisite bone scan and cat scan which were both negative.
Doc is recommending a total radical prostatectomy with lymph node dissection. He tells me that with my biopsy, he cannot do the nerve sparing surgery, so my sex life is now over.
And as important as that "was" to me, it has taken back seat to things like being alive, and also being able to control my ability to pee, which I'm very concerned about.
Yesterday, I met with a leading oncologist in this field at Tulane in New Orleans, and he is in agreement with the surgery. That way, if (when) the PCa returns, we can still do some form of radiation.
Well, that's most of the ugly stuff. I suppose the good stuff is that there is still hope, although 2010 is going to be an extremely difficult year from this point on. I hate sitting around waiting to find out if the PCa has invaded my lymph nodes or seminal vesicles or other surrounding tissues. Once I know, maybe life will become easier. The fears of the unknown are killing me. (Pun intended)
I'll be scheduling the surgery for sometime around August 2, and I'm scared sh!tless.
Happy 4th everyone.
Well, I am now a little over three weeks post op. The surgery actually didn't go bad, and I received good news (relatively speaking) from the surgical pathology. My pathology was negative for cancer in the lymph nodes, seminal vesicle, and surrounding tissues. The cancer was contained within the prostate capsule, and did not involve the ink stained margins. That's the great news.
The bad news is that Gleason # did not change. I'm still Gleason Grade 9, and staged at T2C N0 MX. I return to urologist on Sept 3 for first post op PSA, which should be ZERO, and hopefully will stay that way for....oh....about 30 years.
Doctor wants to start me on Lupron on next visit as well. Injections will be 3 to 4 times a year for two years. I'm not looking forward to that at all. But, he says it's the standard of treatment, and I can find nothing to dispute that. That's all for now. I'll update again after Sept 3.
God Bless everyone.
At this juncture, I am facing a seemingly impossible decision that even the experts are in disagreement about. That is whether to do a two year course of Lupron after an open RP.
Two months after surgery, my PSA is not detectable. Will test it again early December. Urologist doctor wants me to do two years of Lupron. Oncologist says no. Head of Duke says "dunno". Dr Snuffy Meyers is also a believer in Lupron. I'm going to MD Anderson on September 29, 2010 for consult, then back to oncologist at Tulane Oct 5 2010. After that I'll have to decide. I have an prescription for Casodex 50 to begin if I decide to do the HT (hormone Therapy) to prevent the flare.
Anyway, met with urologist doc today September 24,2010. Tried Caverject for the ED. Nothing. Dang, and I had big plans for this afternoon too. Daddy wanted to play. Doc says we'll try again next week with a little stronger dose.
That's all for now. Will update after the MD Anderson visit. D
Hey everyone; Well, I did meet with an oncologist at MD Anderson Hosp. They reviewed all the films, reports, etc that I had sent in previously. He actually agreed with my oncologist at Tulane that their recommendation is to go live and simply stay on top of PSA tests. After my allotted time was used up, he left.
My uro is a very intelligent, and logical fellow, and I genuinely like him. I believe he did a great job with the surgery. Overall, my recovery was uneventful.
His argument is that I will only have one opportunity for my body's immune system to win this battle and that is to begin the Lupron, so any remaining PCa cells cannot grow. My training doesn't allow me to argue intelligently with him. I've read enough about Lupron to know that I don't want to do it, but I'm simply afraid not to. What a crappy position to be in.
Now, having said that, I know there are many fellows who would trade places with me in a heartbeat. I understand and feel horrible for anyone fighting cancer in any of it's many forms. My heart goes out to each of you. I sincerely wish you the very best.
During my last visit, my uro doc asked me this; "What if I'm right? We have one chance to give your cancer the one two punch. We've hit it hard by removing the prostate. Now let's help your body to kill it off." How do I argue with that?
Right now, I'm scheduled to receive the first of 8 Lupron injections on Oct 14, 2010. I am still majorly conflicted about this, and the only downside I can identify is the side effects.
God bless everyone.
It has been to long since my last update, and I apologize for that. However all is good news. Since my surgery, I have completed 2 years of hormone therapy. My last shot of Lupron was April, 2012.....almost a year ago. I have met with my uro several times since and each time PSA; was non-detect. On my last visit, my t levels were slightly over 80, which (I guess) is better than 20. Feel free to read between the lines. I suppose that I will be a little nervous every time I go back for another PSA; from now on, but that's just how it is. As far as side effects, I'm still 99.9% continent, and am happy with that. As to the other third of the trifecta,.....well....both nerves were lost in surgery. Anyway, that's all I have for now. I wish the very best to all PCa survivors and their families.
Wow, I can't believe it's been over a year. When I was a kid, I recall my folks talking about how fast time was going by. I didn't understand that at the time....I even thought it was kinda dumb because it was forever until Christmas! I understand it perfectly now. Anyway, I'm doing well...albeit a year older. (61) I just had my PSA; done a couple of weeks ago, and I'm still a zero!! Thanks to our Lord. I continue to be humbled by my continuing zero's. I don't know if it is making a difference, but here's what I'm doing; 1. Eating roasted almonds with breakfast every morning along with blueberries. 2. Taking 875 mg of curcumin complex every morning. 3. Taking 500 mg black seed cumin every evening. No clue if this is making a difference, but it's not hurting anything either. But so far I'm still planting a big garden, hunting and fishing when I can, and enjoying life. I am wishing the best to all fellows fighting PCa. And for all you new Gleason 8, 9 or 10 guys out there....hang in there....it's not the end. When I was first told of my Gl 9, I thought I was done...that was 4 years ago!
Just received the phone call with my latest PSA;..non-detect ! whewww. So it's now been 4 years since the prostatectomy followed by two years of lupron. My Lord has blessed me so much. At my last visit with my uro, we agreed to do two more cycles of the 3 month PSA;'s, and then go to six months between visits. So I'll see him in November, and April, 2015.
One of the things I have been doing is taking circumin on a daily basis along with bioperene. Black cumin in the evening and regular cumin in the morning. No clue if that helps, but there is a corelation that suggests some benefit. For one, you do not see much PCa in fellows from India where they consume a lot of cumin. Like I said, no clue if there's a benefit, but thought I would pass it on. Being a G9 guy, anything I can do that makes sense, I'll do.
Okay folks, I wish the best to everyone.
Well it's been over a year since I updated. I began this journey with a Gleason 9 that scared the crap out of me. My PCa was organ confined, which was a surprise to us all. So far, the Lord has blessed me and my PSA; continues to be non-detect. My Uro is now making comments about the possibility of my being "cured". But I'm still keeping my guard up, and getting my PSA; checked every 3-6 months. I had my PSA; checked just last week....still non-detect. Yaaa!
So, all you Gleason 8's, 9's, and 10's....there is hope, and I'm living proof. I've passed the 5-year mark now, and life is good.
It's been a few months since my last update. I have nothing to report which is a good thing. Last PSA in January, 2016 was non-detectable, but they did a standard test which only tests down to .1, and I was less than that number, which is fine if you've never had PCa.
But I need the test that goes down to at least .04. So I will be testing again soon. So, best wishes to all who are fighting this disease. Keep up the good fight.
Well, its been a while since I last updated, but I am doing well. I am now 7 years out from diagnosis as a Gleason 9 and I'm still non-detect. My uro is actually using the "cure" word in our discussions. I thank God for healing, and I thank God for my uro. I am busy and active and enjoying our new granddaughter. Never give up!
David's e-mail address is: dnolan53 AT gmail.com (replace "AT" with "@")