just learned have 4th stage prostate cancer

[GOLFER72]

my name is Frank 75 yrs old, just learned Dec 2016 via biopsy n cat scan have 4th stage prostate cancer doctor gave me injection of Lupron scheduled follow up scan march 16, 2017 does anyone know my life expectancy on this drug Doc says 3 to 5 years i am also interested in test programs if can help others after i am gone,

[Darryl Partner]

HI Frank Good that you found us here. There are lots of guys who share some of the characteristics of your story. By "test programs," I assume that you mean clinical trials. You can find clinical trials at clinicaltrials.gov, malecare.org and soon, via the mobile phone app (free) Cancergraph. Clinical trials are worth looking at, though you probably haven't come close to exhausting your current menu of approved treatments. Where are you located? Have you had second and third opinions (from medical oncologist)? Have you had a second opinion on your biopsy results? malecare.org/second-opinion...

[GOLFER72 in reply to Darryl]

i live in san clemente, ca i have 2 doctors in different offices how can there be different opinions on biopsy's or cat scans is that not science

[Darryl Partner in reply to GOLFER72]

Opinions on biopsy's are opinions...not science. In our support groups, men have seen divergent opinions on their biopsy. Indeed, one man, about eight or nine years ago, refused to have a second opinion on his biopsy, insisting that he trusted his doctor (even though the pathologist is a different doctor than his urologist). He was a man in his mid fifties who had surgery on what he thought was a Gleason 6...his post op pathology showed he didn't have prostate cancer at all. That was in New York City. Since then, we make a strong suggestion to all to have their biopsy read by a second pathologist at a different facility than the first.

[GOLFER72 in reply to Darryl]

thank you i am making a copy of your reply to forward to my Doc

[Darryl Partner in reply to GOLFER72]

Good. Please keep posting here with any and all of your questions.

[GOLFER72 in reply to Darryl]

THANKS WILL DO JUST E MAILED YOUR PREVIOUS COMMENT TO MY DOC AWAITING REPLY

[AlanMeyer in reply to Darryl]

Here's a small addition to Darryl's point about biopsies being opinions.

As I understand it, a pathologist puts each biopsy sample on a slide and examines it with a microscope. He then compares the tumor cells that he sees with pictures in a standard reference and tries to determine - are most of them like this picture or like that one? What is next most common? Of all the cells on the slide, what percentage show any sign of cancer? Probably none of the cells look exactly like the ones in the pictures, so he has to make judgments based on his eye, his experience, his skill with the microscope, and his knowledge. Apparently some pathologists are better at it than others and some may be more careful and exacting than others and take more time to do a good job.

There are some labs with high reputations for prostate biopsies. One that I know of is Johns Hopkins Hospital and Medical School in Baltimore. I believe their lab is run by Dr. Jonathan Epstein, a well regarded researcher who has advanced the science of prostate cancer diagnosis and treatment. But any second opinion can be useful. If two pathologists see the slides and come to the same conclusions, they could both be wrong, but the chances are greater that they're both right than if only one guy looked at the slides.

Best of luck.

Alan

[GOLFER72 in reply to AlanMeyer]

does this interpretation apply to the cat scan also

[AlanMeyer in reply to GOLFER72]

I'm not an expert but I think CT scans are also subject to interpretation. What the scans show are are dark spots where one might expect light areas, or light spots where one might expect dark areas. The spots themselves don't necessarily mean cancer. They just mean that something here is different from what is seen in other people or is seen in an earlier scan of the same person.

As I understand it, two experts might sometimes disagree about the likelihood that a particular spot is cancer. Sometimes it's obvious. Sometimes it might be necessary to biopsy the spot to find out for sure.

[jal1954 in reply to AlanMeyer]

On my two CAT scans, the radiologist reported the presence of an erectile device in the scrotum. I have no such thing. I do have an AUS. I guess they look the same on the scans. Point is - the radiologist reported what he saw, which was different from reality.

[deano58 in reply to jal1954]

On my first bone scan the Radiologist reported "suspicious spots" in several areas, but a different Dr reported on a follow up scan 6 months later that they were signs of degenerative bone disease such as arthritis and what they first thought was a rib met turned out to be a healed cracked rib. A CT scan showed "Brachytherapy Seeds in the prostate". I never had them, I had ERBT and what he saw were the 3 gold marker seeds I had put in before the ERBT.

[AlanMeyer in reply to jal1954]

I used to have an erectile device. Worked all the time when I was a teenager and young man but, sadly, it has lost its spirit

[chhs1976 in reply to Darryl]

Well, now he'll never get prostate cancer, will he?

[Dan59 in reply to GOLFER72]

For a while when I was diagnosed they thought I had a 4 cm mass on my left ventricle via ct scan, it was later to be determined to be a benign unrelated event after several years remaining the same , maybe a fold. Also it is hard for them to distinguish between degenerative bone disease and cancer, And as Darryl said second opinions on biopsy is recommended, In my day I called the clinic that did it and had it sent to John Epstien at Johns Hopkins for 200 dollars. In those days Bostwick lab was good but had some extra test they did Ploidy( not sure what it means but they charged 400. I am not sure where is good now.

Dan

[bhammel]

Radiation failed for me in 2010; Lupron has worked since then.

[Dan59]

I am wondering what your Gleason score is, what was your initial psa , and are you in any pain? How extensive are the mets that they think they see? Get a second opionion with a good prostate specific medical oncologist, what is your location, others may chime in with reviews on medical oncologist in that area. No Doctor can successfully predict how long you will live, I quit asking in June of 2006 after a stage 4 , Gleason 10 diagnosis at age 49, my original psa was 148,I was given a year to live. I am still here, actually still prechemo. Are you taking Avodart or bicalutamide. recent studies suggest longer survival with 6 rounds of chemo in the beginning, not sure if this holds with your age, we wish you the best, many knowledgeable people in here will chime in, so you are not alone with this.

Dan

[GOLFER72]

psa 9.84 gleason scores 8s and 9s, no pain or discomfort wouldn't know had cancer if not for biopsy n cat scan

[cfrees1]

Well, you are at the early part of your journey. There are men on here, also diagnosed Stage 4, who have lived 15+ years. So it's still early to say. Stage 4 does suggest metastasis, so the board here will be interested to know if they found only regional mets (nearby lymph nodes or seminal vesicles) or distant?

I was also diagnosed Stage 4 in Dec. 2015, with regional mets. I had an open radical prostatectomy where they took out my prostate, seminal vesicles, 30 lymph nodes and parts of the bladder neck. My PSA went from 99 down to .05. I am currently on ADT (Lupron) to keep my testosterone low. The plan is to ride the Lupron train for three years, then go off to see if my PSA rises, if it does go back on Lupron. We'll do that until my PSA is rising even while on Lupron. They call that castrate resistant. Once castrate resistant, there are several chemo options and one immunotherapy option currently FDA approved which will buy us some more time. And there are several more therapies near the approval stage. The goal here is to stick around long enough that I either die from something else or they find a way to keep the cancer in permanent remission. You too might be so lucky.

So don't worry about dying quite yet. There are lots of options out there, and at any one of them, your PSA might just stay low and the cancer grow so slow that it won't be your ultimate nemesis. Stay positive.

Chuck

[AlanMeyer]

I agree with Dan and Chuck that you have at least a fighting chance of a lot of years ahead with a good quality of life.

If your cancer is aggressive (a history of high PSA, high Gleason, rapid PSA doubling time) I suggest that you talk to your oncologist about chemo now along with your Lupron. Maybe bring him a printout of at least the abstract from the New England Journal of Medicine article referred to in:

healthunlocked.com/advanced...

Best of luck.

Alan

[Charlesd]

BE SURE TO CHOOSE AN EXCELLENT SURGEON WHO IS A SPECIALIST IN PROSTATE SURGERY! VERY IMPORTANT!

[Shepard]

In 2011 I learned that I had aggressive Stage 4 PC. I was told one to five years! Surgery, radiation and now Lupron with Bicalutamide and I am still doing work on my ranch. Do have bone loss, some GI track issues and joint pain, but I am still vertical. In the early years, I was very concerned with the schedule of this disease. I worked out an end of life plan and sorted out loose ends. This has given me peace of mind and the freedom to emphasize daily living. I think it has also given me greater physical strength because I am not spending valuable energy on thoughts of dying. (Got that done early and moved on.) I respect that each of us have a personal way of dealing with the cycle of life. I encourage you not to set a "dead date", rather go on with realistic planning for and doing the living that is yours. I accept that "my" PC is not curable with the current treatment and I am open to options with better expectations when they become available. Meanwhile I am doing my best to follow the regimen and health supportive practices. I am performing beyond expectations and find quality in life as it is. I wish good living for you and your family.

[Hidden]

Hi Frank,

No one should provide a prognosis of any length of time to a newly Dx man. I was Dx in 1/10, and was put on Lupron shortly thereafter. I'm 57 now, and on Lupron full time, Zytiga daily, and Xgeva monthly. When I finally coaxed it out of my Uro he gave me 10-15 years. At this stage of the game I feel I will blow that estimate away. I feel too good to be slowly dying. With that said, I no longer am able to work a regular job, and every one of those side effects can be troubling. We all get them, with some experiencing more severe effects than others, just be prepared and and try to keep a good attitude going forward.

Peace, Joe

[GOLFER72]

THANK YOU JOE VERY ENCOURAGING I HAVE ACCEPTED MY EVENTUAL FATE AND JUST VERY THANKFUL FOR THE LIFE I HAVE LIVED AND FOR WHAT EVER TIME I HAVE LEFT. IN A WAY IT'S GOOD TO KNOW SO YOU CAN PREPARE AND DO ALL THOSE TRAVELS, ETC THAT HAVE BEEN PUTTING OFF, FORTUNATELY I HAVE ENOUGH IN SAVINGS TO PURSUE MY BUCKET LIST. MAY YOU LIVE LONG AND JOYFUL

[scarlino]

Hi Frank. I was 56 when first diagnosed five years ago. I had biopsy on initial diagnosis read locally and Gleason was 4 + 3. I sent to Johns Hopkins for second opinion and it came back as 5 + 4. Had my treatment at MD Anderson. While trying to decide on surgery or Oroton therapy, they read it as 4 + 3. CT scan showed a slightly enlarged pelvic lymph node, but not so enlarged that it was considered abnormal. I chose Proton rad. Cancer returned 2 yrs later, with two pelvic lymph nodes enlarged. In my mind they should have paid more attention to that initial enlarged lymph node, which tells me John’s Hopkins was probably the more correct Gleason scoring.

I made my decision based on my own research. Would things have gone differently? Who knows. I’m at peace with it and while I don’t enjoy having a chronic cancer, I could get hit by a bus tomorrow.

Get a second opinion, do your research and choose what makes YOU feel like the right direction. Doctors, while they like to think they are god’s, are like weathermen. They are as often wrong as right on life expectancy. Live your life, use your gifts to better this world and forget about how long you have. Concentrate on how much you can make a positive impact with your life! Be blessed.

[motosue]

Here's what I did:

Diagnosed in Oct. 2010. 4 =4=8 . PSA about 6. Took Lupron then chemo. Then High dose radiation seeds in my prostate. then external radiation around prostate and on a spot on my hips. Now on Xtandi, Zytiga, Lupro. Luckily still undetectable.