On January 7th 2016, I received my biopsy results. Gleason scores 7, (all samples) high volume. PSA around 24.5. Surgeon recommended a robotic prostatectomy to remove my prostate. Unfortunately, when I came in for a post surgical follow-up, I still had PSA of 3.5 & 3.6 on two different measurements. Some of the prostate cancer slipped by. Pathology on 5 nodes were positive. Tomorrow I start hormone therapy. The oncologist claims this will lower my PSA to undetectable levels, but this will not mean I am cancer free. Crap! I just want to kill cancer! Side-effects: double-triple crap!
I am having trouble locating a person or persons to talk to that are on this path, are farther ahead of me and can shed some light on what I should expect.
What I do know is that I have Stage III Prostate Cancer. I have been told I will not die anytime soon. Good, my youngest son is in high school and I want to see him graduate from the University, get married, have kids, etc. I have also been told there are a number of new therapies coming out that have great promise, but I have no specific information. Lastly, I have heard several anecdotes of people that have received treatments and lived another 20 years or more.
At the same time, I am scared, depressed, concerned. Up until my doctor ran my PSA at a routine physical last November, I have never had any symptoms of anything. I run 4 miles, eat right, sleep well.
Please shed some light on what journey will be from tomorrow on.
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SailorDavid
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I'm sorry you're having to deal with this. I was in your position nine years ago when I was 43 and the dad of two teenagers. My numbers were a little worse than yours, but my surgery was not curative, and I moved on to other therapies. I've had lots of twists and turns, but I've seen nine Thanksgivings, nine Christmases, four graduations and a wedding, and I'm still kicking.
The treatments aren't for sissies. You'll be challenged, but ADT should get you several years down the road. Just remember you have lots to live for. Now go kick this thing in the ass!
Well, I understand what your feeling. I survived stage three prostate cancer myself. The only way I found out was from a psa test that jumped up from last year. So after 2 biopsies... I needed to have the prostate out ....then be on lupron before my 8 weeks of radiation. Seems everything went well but unfortunately it spred to my nerve bundles and the neck of the bladder and a few other places. But the radiation took care of that..
That was back in January the 6th 2012.
Now, I feel greatfull that I am cancer free. I get a psa test 2 times a year. And get a 0.03 so I'm happy.
The bad side ..I have an incontanance problem and no erections. Pills didn't work for me for either problem. But everyone is different so they May work for you. Inplants can be an option for some. Unfortunatlly because I have other problems that's not an option. So I have learned to live with it for the time being .. I'm sure their are other things that I haven't tried as well.. I still work out , and do my cardio a few times a week..and still lead a full life.
I'm 68 now and greatfull that I have made it this far...
And remember this is just what I went through , everyone is different ..
I have a very similar situation to yours. My PSA doubled in March of 2015. I had a biopsy in July 2015 and was confirmed with cancer with a Gleason score of 4+4. I had my prostate removed on Oct 14, 2015. I had no bladder control for 2 and 1/2 months slowly it can back to me. Still not 100%. If I cough, sneeze, or strain, I have a leakage issue. One thing I firmly believe helped me was working out. Even after the surgery and still in ICU, I walked each morning and evening for 1/2 hour with a walker. I had 2 weeks in home PT when I got back home, but was released to go back to the gym. I believe work-outs helped me gain better control. At home, I walked with a walker every hour for 15 minuted. In my January 2016 my follow-up showed my PSA to be too high. The doctor's believed the cancer was in the prostrate bed. They gave me a hormone shot and 26 radiation treatments April through May 2016. During my radiation treatments, I continued to go to the gym and work out. I was told I had stage 3 cancer and very aggressive caused by agent orange from Nam. 4 days after my radiation treatments, I went to the beach (Nags Head) to recover for a week with my wife,son, and his family. On that Monday, I took a 4 mile tough hike with my granddaughter over the sand dunes. I was able to keep up with my son's family all of whom are in great shape. My son and grandson are both martial artists and practice 4 days a week and workout with weights 5 days a week, my daughter-in-law and granddaughter both do 5 miles jogging 3 days a week and weights 4 days a week. To make a long story short, you have to have a positive attitude, believe you will beat the cancer, and push through to have a decent quality of life. Remember, what the mind can conceive, the body can achieve. Keep working out and don't let the side-effects keep you from doing what you want. You can beat it!!
Yo, Sailor David, hang in there...rough waters ahead, but you can handle this! YostConner and jvmott gave you some really good background info. If you read my profile info (as well as others in this group) you can get quite a bit of background info; some helpful, some not so much. Know this Dave - you are not alone! One of the most important things to consider is a local support group. Yeah, these online groups are great, but face-to-face conversations can be helpful too. Check with your oncologist, primary, or local hospital for opportunities. I'm going on 6 years; having started out with Dx of stage II aggressive. By the time they got me on the table, did some tissue pathology at the beginning, they pulled out DaVinci's litle robot hands and said, sorry, out into the lymph nodes. My surgeon said there was more potential for additional complications in removing the prostate itself, with issues like nerve sparing, etc...and I'd still have cancer out in my system with the lymph node involvement. Dx: 0mPca. 5 1/2 years on hormones. No longer asymptomatic as of 2014, bone mets in the pelvic area, Zytiga for the last 13 months (which now appears to be failing), pondering next steps. Yeah, Dave...this stuff scares the crap out of each of us in our own way. But as I said, you are not alone - ever. Stay strong... and start saving for those colleges and weddings...you'll make it!
Hi
I am sorry to hear about your situation. I started my journey 10 years ago and have had almost all the treatments available. It will be a challenge.
You need to take charge of your situation. First get several books on prostate cancer and read them. Go on Amazon. Don't limit yourself to one or two get several. Learn everything you can about your disease. Get copies of all the surgical notes, pathology reports and doctors visit notes from your doctor and hospital.
I do not believe your urologist can help you at this stage. If I were in your shoes (and I was) I would seek out both a medical oncologist and radiation oncologist who specialises in prostate cancer. If you can get to a major cancer center like MD Anderson (Houston), MSKCC (NYC), John's Hopkins (Baltimore) to name a few. You need to be evaluated for salvage treatments such as radiation which may or may not be appropriate but only a qualified professional can determine. You also might be able to enter a clinical research trial, possibly an immunotherapy one.
I would also look into getting a C-11 Choline or C-11 Acetate scan (Google search).
There are many things you can do that may extend your survival but most important is to become your own advocate. Do not take what a doctor tells you on face value without understanding your options. Before any additional treatment understand fully the possible side effects.
You may benefit by joining a local support group.
I am not a medical expert only a fellow patient and these are just my opinions.
Absolutely LEARN, ASK AND GET 2ND 3RD ETC. OPINIONS. what one doctor says doesn't mean it's right for you. Johns Hopkins did not help us at all but they may help others in same or different situations. I am not trying to put them down I am just trying to state that even if you get an answer that doesn't sit well with you and you're not happy with what they are saying...... keep asking and try other doctors. Just because they are a good Hospital doesn't mean they will be good for you. @SailorDavid
I am slightly ahead of you on this path. Diagnosed when I was 58 years old on February 2016. Gleason 8(4+4) CT scan showed it had spread to pelvic lymph nodes. Da Vinci surgery April. Pathology report Stage 4 D1, T3N1, rare ductal cancer (~0.4%) that does not raise your PSA. Because it it a rare form the Dr's do not know the best way to treat it. That said, I started hormonal treatment last week. So far no major side effects. Will start radiation as soon as I get better bladder control. Two months out from surgery and still Going though 3 to 4 pads a day. They may add Chemo later (what fun!).
It sucks having cancer but I am not letting it keep me down. Even with pads and hormonal treatments I am riding my bike 20+ miles, long walk with the dogs, evenings with the wife on the back padio with soft music and wine.
Like you said, they are coming up with new treatments all of the time. Keep positive and love the ones close to you.
Hey David, Sorry to hear you're going through this. As a number of the guys are saying, It's going to be a tumultuous ride. Lots of ups & downs and having to get used to new normals. It sucks but beats the crap out of not finding it until you're way past the point of the meds being able to help and extend life. We discovered my cancer at age 50. I just turned 57 on June 1. I had a psa of 14.1 and gleason or 7 (4+3) when it was discovered. I was very scared and thought it was going to be the end. Had the radical prostatectomy & 35 radiation treatments. They didn't get it all so now it's a battle to get the most out of the years I will get. My montra is "Shooting for 90". This battle wakes you up & helps you recognize the beauty of each day and moment. You should still have a bunch of years in front of you. As others have said, take control of your treatment. Research, research, research. I'm presently on Xtandi, Ehligard & Cellibrex. The side affects suck but for the most part are bearable. I take diet seriously. I try to maintain a vegan diet. Sometimes better than others. I try to run 2 to 3 times a week about 3+ miles. I've started taking hemp oil which is cannabis minus the THC side of it. The CBD may or may not help fight the cancer. I avoid the THC side because I'm not interested in the psychoactive aspects of the drug. I also did the Provenge treatment 2 1/2 years ago. My PSA has been dropping steadily for the last 2 1/2 years. My last test (about a month ago) showed my PSA to be .4. The good thing (If there can be anything good about this.) is that Prostate cancer is getting a lot of attention these days and there are a number of options available. I've moved from Lupron to Provenge & Eligard to now Xtandi and Eligard. Hoping to stay behind the curve of the medical world and their latest treatment options. Good luck to you David as you get used to your new normal.
My path began in 2011: surgery, radiation, hormone therapy three years ago and now oral chemo going on two years. For me, the Lupron slow me down for about three weeks and then I was back to normal activities on the ranch. Hot flashes were daily, but not that bad. I have been able to do my work, albeit at a slower pace up until the last couple of months. Now I deal with fatigue and weakness in the legs. I have lost some muscle tone in my arms. Pain is not a big deal just sort of achy. I think most of my fatigue issues come from zero T. The physical results of no T are evident in the loss of body hair and weight gain of 15 pounds. I have desire to "get at it", but the body is slow to respond. My doctor is quick to point out that I am 77; a response that I do not accept. I do think that I have done as well as I have because I have forced myself to continue to do the physical work. However, recently I am too slow and must rest and only the most important things get done. Despite all this, I enjoy every day and am making improvements to the ranch. Have been moving flower beds and shrubs around the house and reading more when I rest. PC is life changing: priorities must change or you will get depressed. It puts a hole in your life, but the good news is that you can fill that hole with some thing else - make it a good thing. Happy trails to you!
Although you have just begun the journey you have started on the proper foot. You found us and we are all here to really help you and your family on this journey. As you have already seen from the replies you have no reason to think that you are going to die anytime soon. Like so many of the others who replied I too was diagnosed with a kid in high school and another in college. My then High School kid is now a practicing attorney (a fourth year associate at a firm) and I have to tell you that I am today in much the same prostate cancer condition then I was at the time I became metastatic.
Every man's cancer is different and we will walk with you and help guide you. I am also sure that as you become more experienced you too will eventually help guide others.
As has been suggested you should find a support group if possible. Malecare has a number of groups through out the world. Go to our Web Page and click on the sub-heading Support Groups.
We also have a informative blog about advanced prostate cancer that you should follow regularly and become very familiar with ASAP. It includes information about almost everything about treatments, decision making, looking a head and advocacy.
I understand that at this moment things do look dark, but it does get better. There will be bumps, but life always has them. Your goal is to take control and be 100% responsible for your medical treatments and for your life. We all do this through knowledge, make yourself well informed.
I had a similar experience. I was told that there was no possibility of a cure and that treatment would only be palliative.
Went to see Dr. Meyers, on to Sand Lake Imaging (where they found a lot of tumors as far up as behind the lungs) and from there to the Datolli Clinic. Still negative after 2 years. Find the best possibly people you can find and don't be afraid to sell the farm.
You may not have the life you envisioned and it may be more difficult but don't give up and keep fighting. I am just finding out about this genome sequencing and I am hoping that others will speak up that know about this. I believe it is something you should probably check into. my best wishes for you and your family. I think you will be ok for a long time. Try to be as kind as you can be to your family even with all your going through because they are going through it also. Most sincere, Jackie
Dave as one Dave to another, there are all kinds of alternative treatments. If you haven't already, check out the Provision Proton Therapy Center and talk to the oncologist there about your situation. I was diagnosed last April (2015) with Prostate Cancer. I elected to taking the proton radiation treatment over all other treatments. My PSA was at 4.9 with a gleason score of 3+3. I had 39 treatments with no side effects or collateral damage. Three months after treatment PSA was 1.5, 6 months later was 1.0 and I go the first of August for my one year check-up, looking for 0.1 or less. I live within 120 mile of a Proton Therapy Center in Knoxville, TN so we just drove back and forth. It wouldn't hurt to check it out before having surgery and compare it too all the other treatments. God bless and good luck in you journey.
I want to thank everyone for your kind words. I am being treated at MD Anderson and I do have an oncologist. I did have a C-11 Cholene scan, but the results only showed a few faint spots that were hard to read in my core. I got my first Lupron shot yesterday. I was told to expect the side effects after tomorrow.
I did find an in-person support group as some of you have recommended. The group meets this Monday night and my wife and I are going together. I am looking forward to the meeting.
I still have a wide range of emotional ups and downs. I never gave any thought to how I might die until a few weeks ago at my post-op follow up when they told me the cancer got in my lymph nodes. The men in my family generally live to around 90 and I'm only 54. My dad is just turned 80 and is fit as fiddle.
I was happy to see that there people here that have been going for a decade or more. What I have not gotten past is my fear. As one person said, it is not the life I chose, but making the adjustment is not easy. I guess I have to learn. I am still eating well and the doctor said I can return to running next week. The nurse that gave me the Lupron shot suggested I add weights to help maintain muscle mass.
I will keep you posted and please continue to share with me.
SailorDavid: Even though Pca is a physical disease, the diagnosis and the treatments have dramatic effects on our psyche and emotional plain. Your fear is justified and you will experience quite a ride on an emotional roller-coaster once the Lupron and Casodex kicks in several months ahead. And don't forget that your family is on the "ride" as well. I found it is wise to seek out a good therapist who understands something of the journey you are embarking on. Don't feel embarassed to seek help and counselling. Don't try and work through this all on your own. Talking it out with professionals is a great help along the way. You can and WILL beat back this monster, but you, like me might suffer from a stiff neck from looking over our shoulders for the rest of our lives. Be Well. Peter K.
I see a lot of replies, but not exactly what you were looking for.
I am the CEO of the Prostate Forum of Orange County Ca. a support group, and can give you some insight on what to expect from different treatments, including information and HOPE.
I started my cancer trail in 1995 with a Gleason of 4 +3 and have been stage 4 with bone mets. for over 6 years. Still no symptoms, but I keep educating myself.
If you would like specific information, please call me at (951) 545-1616
Russ Thomas
russaree@yahoo.com
Hi,
First, you have Stage IV PCa since your lymph nodes were positive. I am ahead of you with similar circumstances but you must know that each case is unique so you need to have a top-notch team. If you are in the USA, I recommend being treated at a CCC (Comprehensive Cancer Center) and you can google that.
Ask what your TNM is. mine was T3b N1 Mx in April 2004 with 8 positive nodes of 35 removed. You need to read your surgical report for your specific details and discuss each with an oncologist.
After surgery, I was on Casodex and Zoladex for 23 months (all 2004-05), off for 2 years, resumed due to recurrence for 24 months (all 2008-09) and also did salvage radiation early 2008 to whole pelvis 45Gy and prostate fossa 21.6Gy. Then off hormone ablation all 2010, 2011 and 2012.
Due to recurrence and progression Casodex and Zoladex resumed Jan 2013 but Casodex stopped April 2014 since some bone metastasis found in ribs and spine. Mid May 2014 did Sipuleucel-T and in Sept 2014 added Abiraterone and Prednisone. Abiraterone discontinued April 2016 and Docetaxel started (my first chemotherapy and I am mid-way on this now). I also did Fosamax for 29 months starting June 2004 but replaced this with Zometa starting Feb 2008.
My quality of life has been excellent the whole time except once starting Docetaxel this April.....side effects are nasty....but I'm still working, vacationing and doing 98% of what I did when I was 40. BTW, I am now 71. I also became a pescatarian, do not consume vitamins other than oncologist recommended calcium and D-3. I also get a B12 shot once a month.
So, be concerned and do some research on qualified sites (Mayo Clinic, U of Michigan, Sloan Kettering....) and get that best team. I have only an oncologist at a CCC / teaching college...no need for a urologist.
As Groucho Marx said, "Being dead just means you're not here anymore". So, no need to be depressed. The goal is to stay here as long as possible and you do that with the best team you can assemble...including positive family and friends.
I've read it's a bit controversial but have viewed various posts where the standard is 10,000 per day. however you might want to ask in a separate post .
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We discovered my cancer at age 50. I just turned 57 on June 1. I had a psa of 14.1 and gleason or 7 (4+3) when it was discovered. I was very scared and thought it was going to be the end. Had the radical prostatectomy & 35 radiation treatments. They didn't get it all so now it's a battle to get the most out of the years I will get. My montra is "Shooting for 90". This battle wakes you up & helps you recognize the beauty of each day and moment. You should still have a bunch of years in front of you. As others have said, take control of your treatment. Research, research, research. I'm presently on Xtandi, Ehligard & Cellibrex. The side affects suck but for the most part are bearable. I take diet seriously. I try to maintain a vegan diet. Sometimes better than others. I try to run 2 to 3 times a week about 3+ miles. I've started taking hemp oil which is cannabis minus the THC side of it. The CBD may or may not help fight the cancer. I avoid the THC side because I'm not interested in the psychoactive aspects of the drug. I also did the Provenge treatment 2 1/2 years ago. My PSA has been dropping steadily for the last 2 1/2 years. My last test (about a month ago) showed my PSA to be .4. The good thing (If there can be anything good about this.) is that Prostate cancer is getting a lot of attention these days and there are a number of options available. I've moved from Lupron to Provenge & Eligard to now Xtandi and Eligard. Hoping to stay behind the curve of the medical world and their latest treatment options. Good luck to you David as you get used to your new normal.
RN/Caregiver and only next of Kin for my dads good friend (whom I lost in May to a different type cancer), the patients name is Joe
Questions regarding a lupron/Zytega “vacation” and regarding Zometa with Celebrex. 
My journey thus far
