Had an open retropubic radical prostatectomy on 1/26/18. Got my path report back and received bad news on every point...
1. Seminal vesicle invasion identified.
2. Perineural nerve invasion identified.
3. Extracapsular extension identified.
4. Vascular invasion identified.
5. Positive margins at the bladder neck identified.
6. Lymph node invasion identified (Dr. Rabbani harvested 28 lymph nodes in the pelvic region. 10 of them had cancer.)
Surprisingly, my bone scan was clear. I will get a 4-week post-op PSA to justify a PET scan. We need to find out if this is local advanced PC (confined to the pelvic region) or distant. I go back to The Cancer Treatment Center in Atlanta on 2/9/18 to have my catheter removed and then I return 2 weeks after that to get my PSA and talk to an oncologist.
There is also a clinical trial at John Hopkins for men with advanced PC who have had a radical prostatectomy. They are calling me tomorrow about participating in the trial. It will consist of chemotherapy along with hormone therapy and radiation.
I've also started taking a ton of supplements such as curcumin, resveratrol, D3, B12, B16, C, probiotics, etc. I'm eating a ketogenic plant-based diet (no sugar, no dairy, no processed foods, no fruits, and no red meat) and I'm juicing with a cold-press juicer. I'm going to Garners this week to purchase cannabis oil and alkaline water. Lot's of controversy about whether or not the cannabis can cure cancer, but one thing certain is that it can not cause harm and it can definitely promote a sense of well-being which is something I desperately need right now. I hope I can raise the alkalinity of my body to help combat this cancer. Oh, and I am going to drink the baking soda (without the molasses) in the alkaline water too (go ahead and laugh).
My family and I are still devasted over this and we are all having a difficult time processing it, but I've come to realize that no matter how depressed I am, I only have two options: Give up or fight. I have chosen to fight and I'm very thankful for the outpouring of support here. We are all comrades, brothers-in-arms, united together by a common enemy and a common goal.
One more thing I'd like to share. I found a great book on cancer called "Tripping Over the Truth". It talks about one common denominator in ALL cancers is how the mitochondria of cancer cells are damaged and these cells have to resort to metabolizing glucose for fuel. This was discovered by a German scientist named Otto Warburg in 1923 and over time this discovery was eventually discarded as inconsequential, but it is now beginning to gain new attention. Anyhow, I wanted to share this because I started the ketogenic diet when I got my first PSA back in December. I weighed a little over 200 pounds at the time and my PSA was 34.6. Fasting really kickstarts the keto diet and I fasted for 4 days before I started back eating. Two weeks later I was in deep ketosis and my PSA had dropped to 23.4. For me, this confirms that cancer thrives in an acidic environment and needs glucose to survive. I'm down to 183 pounds now and I hope I can maintain this weight going forward.
My goal is to live as long as possible. While statistics may indicate I have anywhere from 3 to 8 years to live, my hope is to get at least 15 years. That will take me to 70. It will give me time to secure my wife's retirement and to see my children build their homes, get married, and have children of their own. It will get me to the three score and ten that God has promised. It will give me 5,475 days to love and to be loved. If I can reach that, I think I will be content.
I will tell you this to give you hope; I am working on my 20th year. I know, two brothers on this forum who have 25 years and they are still alive. You have the right attitude. Do the research and have good doctors, for not all doctors are created equal.
In Feb 2016 I was diagnosed with a PSA at 286, Gleason 9 and bulky disease in pelvic and abdominal nodes. No sign of bone mets. I started with HT then early chemo (6 cycles of docetaxel) in June then an open prostatectomy in December in the same year with the removal of 42 nodes. My PSA is at <0.01 with no evidence of disease in scans. 2 years postoperative HT with 10 months to go and then it will be the true test.
Hitting it hard and fast is vital. Did you or were you offered early chemo? I had a great response to it and it cleaned up a lot of cancer even before surgery. Including any circulating tumor cells in my blood. I'm not a doctor and I'm only guessing but I feel a combination of modalities is the path to take. Go with a doctor that knows prostate cancer treatment today and now.
My pathology report was far from perfect and not a lot different than yours. Your first few PSA checks will tell you more on whats going on. Your attitude is great and it's obvious your learning everything you can. That is key in pushing back on this disease. Keep us posted and feel free always to contact me or others for anything. The mental stress is a big part of what we are fighting too.
Thanks, Ron. I am going to hit this with chemotherapy, hormone therapy, and radiation next. I think it is 6 weeks of chemo, in conjunction with 2 years of hormone therapy with radiation to the pelvic bed and any metastatic spots they can find.
Looking almost exactly like mine....except I also have three confirmed bone mets. Neural and Vascular involvement rising PSA after RP. before starting ADT and Chemo. lymph node and margins positive Bladder neck not involved. PSA from 62 down to 0.132 at this pt. 8 rounds into chemo. I'll keep an eye on you and share what I can...
Dale, I think your attitude is awesome, and you will beat those statistics by far. I was dxed GS 10 bpsa 148 with widespead mets to distant sites in 2006, and it seems you are doing a lot more to beat this than I did, I predict you will be here for a long time, they key is to stay upbeat, never lose hope, never give in, and go day by day. I wish you the best, we are all here for you.
My husband's pathology was was than yours in some cases and it's 14 years since diagnosis. He's been on Lupron since February 2005, no breaks. They threw every treatment at him since he was a Gleason 9 or 10, stage IV with a depressingly lousy prognosis. In his mind he wasn't sick so he lived as normal a life as possible. He's now 69 and going strong. We see his urologist in 2 weeks and he'll get his 6 month Lupron shot. Then, it's back to normal living. I wish you the best. Stay as positive as you can. Every day there can be new developments and treatments. So, your job is to keep going one more day. Enjoy life as much as you can! My healing thoughts and aloha are with you! Joy
That's all you can do. Make every day count. I remember when Les was diagnosed I told him, "We're buying time. Every day is a new discovery and a cure can be around the corner". I still believe this. Aloha, Lulu!
You are doing everything that you can because you have so much to live for. Your family needs you. I’m 56 so I’m
In a similar place. Our kids are adults. I think you’re going to be around for a long time. Who knows ?In 2021 they could discover a cure. Anything is posible with medical advances. Just have to hang in as long as we can.
Let me tell you that you are likely to live much longer than you predict.
I am sorry if i missed what was your gleason score?
What i can suggest you is tomotoes cooked in olive oil. I am in a different country and the DOctors here suggest that too. There are alot of people writes here who knows alot about PCa ..So keep reading.
GREAT attitude. Keep it up. Your diet, exercise, and mental health will create a positive feedback loop that I think will push you to the right tail of the survival curve. As one oncologist told me once: "I don't want you to be thinking months, I want you to be thinking decades."
Plenty of new medicine every year, and exponentially more to come. Read ASCO 2018's web site about new drugs approved this year vs LAST year. Hope in a durable treatment is not just wishful thinking, it's fully warranted. Keep doing what you're doing (maybe except too many supplements!)
Thank you for the encouragement. I will definitely look at that website. Encouragement and hope are two very potent medicines we all need a daily dose of.
I latched on to you getting that catheter out. That’ll be a great day and start some healing. We all go thru hell .Sorry were here. Keep up the fight.
There are too many documented cases of people successfully using cannabis for cancer treatment to utterly dismiss it. Even stage IV cancers. I certainly wouldn't recommend someone forgo traditional treatments for alternative treatments, but I personally know someone who did. A gentleman diagnosed with PCa 2 years ago. He doesn't remember his Gleason score, only his PSA which was 12.8. He decided to self treat with cannabis oil and in 3 months his PSA was down to 3.8 and has stayed there for 2 years. Is he cured? I don't know. Maybe he has a slow growing cancer. Maybe the cannabis oil kicked his endocannabinoid system into overdrive and revved up his body's immune system. I have no idea, but I do know that he had a "response" to the oil.
Hey, so hows the keto working for you? And the Cannibis oil? I am fresh out of radiation and my PSA is .02, up from <.01 a year ago. I know its still there but I'd like to try and pull the rug out if I can.
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