Advanced Prostate Cancer

More Bad News

Just got the results from my biopsy (see below). I go tomorrow for a bone scan and meet with urologist, oncologist, and radiologist. My PSA prior to the biopsy was 23.6. I had a DRE 3 days prior to the PSA, so I'm not sure if that inflated it a little bit or not. Anyhow, praying that the bone scan is clear so that I can have the surgery. The doc told me there is only a 15% chance of a cure and it the cancer is in the lymph nodes there is a 50% chance I will not be here in 5 years.

cancer present in 13 out of 14 cores

9 cores group grade 5 with gleason 9 (4+5)

3 cores group grade 4 with gleason 8 (4+4)

1 core group grade 3 with gleason 7 (4+3)

1 core clear

Specimen - Group Grade - Gleason Score - % of Core with Cancer...

A - 5 - 4+5 - 90%

B - 5 - 4+5 - 90%

C - 5 - 4+5 - 95%

D - 4 - 4+4 - 70%

E - 5 - 4+5 - 90%

F - none

G - 5 - 4+5 - 90%

H - 4 - 4+4 - 70%

I - 5 - 4+5 - 40%

J - 5 - 4+5 - 70%

K - 5 - 4+5 - 80%

L - 3 - 4+3 - 75%

M - 4 - 4+4 - 10%

N - 5 - 4+5 - 60%

30 Replies
oldestnewest

I'll bet he's speaking in worst case scenario... plenty of people here have exceeded that figure - we root for you.

Blessings to you...

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Sorry you got the bad news, but glad you are here in this group. There are lots of people here with amazing results to treatment, many far surpassing statistical models of survival. The first thing I had to learn when I was diagnosed was to ignore the statistics. Naturally, the first question we all have after diagnosis is: How much longer do I have? The answer is the same one you had before diagnosis: I don't know.

The most important thing is to get yourself up to speed on the latest, scientifically proven treatments so you can make decisions when you see your doctor. Hopefully your cancer is contained in the prostate itself. But if it has spread, that could change the course of your treatment. At that point you would also want to have a Medical Oncologist on your team, perferably one that specialises in prostate cnacer. Good luck and let us know what happens. We are here to help and support.

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Cannot agree enough with Gregg57 on this. Ignore the statistics! I was diagnosed nearly 11 years ago with numbers a lot like yours, and I'm still kicking. I'm sorry you had this result, but I look forward to reading your successful notes for years. Best to you.

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I agree with Gregg57 and YostConner. I would most deff have a Mo who treats Prostate Cancer. Also second opinion is a option. Good Luck and all the best to you Jon

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I think you can be in the 15% cure group! Definitely I think you will be around in 5 years. With good nutrition, exercise, and good treatment there is a lot of reason for hope. With prostate cancer there are new treatments coming out on a regular basis. So many of the guys on this forum have go on over 10 years with serious disease.. .and they are still going strong. Chin up!

It is ok to be sad for a while but remember to pick yourself up and we will help you fight.

Tons of hugs and prayers. You can do this!

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Ignore the 50% number. No one knows how long any of us will live ... and all it does is depress you to think in those terms. The mortality tables are very dated and don’t include the new treatments. And every case is different. You have already heard from several men that had comparable cases and they have lived a long time. In my case I had a PSA of 227 at diagnosis 3 years ago and am working on driving it down to 0 again with Zytiga.

As Greg suggests, educate yourself so you can be a strong advocate for yourself. This is critical. Feel free to ask questions of this team. Someone here seems to know the answer to most anything.

Finally, make sure you have a very competent medical team that specializes in PCa. I recommend getting a second opinion - you might learn something ... or it might just give you confidence you are taking the right steps for your individual case.

Best of luck with your journey! We are all pulling for you!

James

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Those stats prolly don't include the CHAARTED and STAMPEDE trial data. I was told in 01/2015 that I was Dx'd at the right time as the CHAARTED results were in and I started ADT(Lupron/Casodex) and then Taxotere chemos two weeks later.

I was GL7 (4+3) with mets to ureter lymph nodes and a PSA @ 840, 18 cores all had cancer - Stage IV with a 28% five-year survival. After 15 chemos and supplements, diet change, exercise and Metformin I hit a nadir of 0.1 - two months ago. I stopped ADT after 30 months and as expected the PSA is ticking up to 0.5 as of 12/29/17. We plan to restart ADT when the PSA gets to 2 and keep repeating these cycles indefinitely - fingers crossed.

I'm three years in and I ain't going nowhere! We are a great group with a variety of experiences and we are here to help you thru this!

Welcome brother to our club

Fight on! Randy

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Sorry that you are here, but all the posts have been right on. First, forget the statistics! Everyone here is different. There is nothing you shared with us would let anyone here think there is not hope for being around for at least a decade or more.

First, while it is hard to do, take a breath and relax. I know it is hard to do but a clear mind is your best help.

Second, get information. Listed below are a couple of good sights for general information. The first sight is Prostate Cancer Foundation. They have a great pamphlet. Their web page is

PCF.org

The second one is from the American Cancer Society. Their web page is

cancer.org/cancer/prostate-...

Third, there have new advances that may help you. About two years ago I had to fight to have surgery as my cancer was also in my pelvic area. Now more and more studies have shown long term benefits for having surgery even if the cancer metastasized. Here is a reference.

sciencedaily.com/releases/2...

Also, there have been “game changing” results though the use of multiple hormonal treatments at the same time, Lupron and Zytiga. Here are a couple of references.

ascopost.com/News/55699

ascopost.com/News/55700

Finally know that we are all on your side. You just got thousands of brothers and sisters. We are pulling for you and will do our best to give you information, suggestions and support. As the song goes, “People like us we have to stick together.”

Walt (a chemist not a MD).

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Dr_WHO - your right on target...

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They told me I had a 50/50 chance chance of surviving my treatment plan at all . Hey , 50/50 , no alternative but death , I’ll take it. Its worked so far.. That 5yr stat, My stat from my Urologist was at first coldly put to me as 51 months.I’m at 33 now with no Psa os signs of PC .. oh yah! I’ve got plenty of symptoms and complaints .. Im now told that they normally see this type of remission extend 4 yrs and I’m in 11/2. I’d never mean to say poor me or I was worse than someone else or brag that I’m doing ok for now . None of us has an expiration date on us.. but also no guarantees with this brochure.West md thought predicts APC will always come back to get us but something else could kill us first.. I became and still am accident prone and somewhat off balance due to I believe having the tubes and infects for a long time.. Don’t think and hope that s not your case.. I’m no Dr , you know what they say about OPinions.? But I can tell you what I.ve experienced .. Take care🌵

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As you can see, statistics like PSA numbers, are just that - numbers! Unless God was in front of you giving you those numbers (yes so many doctors think they are god) - forget them as best you can. It has been stated well by many others in this post. Get educated, be informed and take control of your quality of life and seek the treatment plan that best gets you close to the quality of life you desire.

Glad you are here! Be blessed.

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You are not a statistic. He’s quoting median results meaning 1/2 are worse one half are better than five years . All you can do is hit it hard with ADT and whatever radical treatment you choose .

Bob

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Good Morning dale339,

I had biopsy results like yours 5 1/2 years ago and here I am (please see my bio for treatment history). Have you had an Axumin PET/CT to locate any lymph nodes mets? Being a realist, with numbers like yours, the odds are great that your cancer has metastasized--the goal now is to find it so appropriate treatments can begin.

Cure is a rare word with aggressive Stage 4 prostate cancer. You are looking for a durable remission that lasts for years.

Aggressive cancer requires aggressive treatment, hitting it with multiple things at once. Time matters. What makes a big difference in ultimate outcome is the quality of treatment. Do not skimp on your choice of a Medical Oncologist who specializes in prostate cancer to be your quarterback. Across the US, there are a handful of these docs and it is worth the money and travel time to get a second opinion to whatever is proposed locally.

The members of this wonderful community can provide names of these world-class Medical Oncologists from firsthand experience.

Welcome to the battle!

Best wishes. Never Give In.

Mark, Atlanta

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Thank you Mark. I'm going to The Cancer Treatment Centers of America in Atlanta to have a bone scan tomorrow. I meet with oncologist, radiologist, and urologist Friday.

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Since you are local to Atlanta, I can recommend Dr. Vasily Assikis of the Piedmont Cancer Institute for a second opinion. He is a 50 year old Medical Oncologist who primarily treats prostate cancer and I have complete confidence in him based on 5+ years.

Buy and read "Prostate Cancer for Dummies". Sounds silly, but stays current with all treatments, of which there are many.

I have been a member of a prostate cancer support group which meets monthly on the Emory campus. The guys around the table have had every treatment imaginable and can provide first-hand feedback. If interested, let me know.

I would also be glad to talk to you in more detail about my journey if interested.

Best wishes. Never Give In.

Mark, Atlanta

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I would also suggest reaching out to the Winship Cancer Institute in Atlanta. It’s part of Emory and the only NCI Comprehensive Cancer Center in Georgia—one of only 47 in the country. Among other things, they invented the Axumin PET scan. The care I have received there so far has been excellent, and the Chairman of Urology, Martin Sanda, is one of the leading PCa researchers in the country.

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One of my second opinion docs wrote out on a white board all of the probable treatments and then added each of their respective life extensions. He then added them all up and pronounced that I had 5 years to live!! Needless to say it was a devastating experience. Yost and gregg57 are right, do not listen to nor focus on life expectancy predictions. It's now your mission to not focus on how much time do I have left. I've learned thru my prostate cancer experience to be grateful, to be present, to create experiences, to make memories. In short I've learned to life a rich and full life. Most people do not get that chance. They just go along doing what they're doing never giving any thought to the quality of their life. We brothers who deal with prostate cancer have a clear vision on the importance of living.

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Right. For me there's the challenge of dealing with PC at the same time I am dealing with the challenge of figuring out retirement.

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A lot of people have commented about how cancer has enriched their lives by forcing them to live in the present and appreciate their loved ones and the time they spend with them. I have a beautiful, loving wife and two caring and compassionate sons. We have always been close and we have always enjoyed the time we have together. My sons are 26 and 23 and they still live here at home and my wife and I love that they are still here. WE ARE A CLOSE FAMILY. Last night my wife and sons laid hands on me and prayed for healing. When they finished, the back of my shirt was soaked with their tears. So, while this will not force us apart, it will not bring us closer, simply because we are as close as we can be. My wife and my sons are my best friends. There is no one closer. That's why this diagnosis is so devastating.

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Brother you are truly blessed.

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💖

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Dale,

I am sorry that you have received such discouraging news. As you take in this information and process it, please consider the following:

1. Many people on this forum living with advanced PC have started out with much more serious numbers than you have. Most are astonished at how well they are still doing.

2. It is important to not delay your treatment. Take some time for due diligence, but not too much. Don't let the Perfect become the enemy of the Good Enough.

3. As with all things in Life, there are no easy answers, no perfect treatments, and no guaranteed outcomes- not even for the temporarily able-bodied- and let's face it, EVERYONE on this planet are temporarily able-bodied. The only thing you can, and must, do is to live with as much urgency, purpose and joy as you possibly can. If you're not feeling good, allow yourself enough down time to recover and try again later.

4. You are unique, your health history is unique, and the relationship that your cancer has with your body is unique. Charlatans, quacks, and even reasonable-sounding people are quick to offer nonsensical one-size-fits-all esoteric and fraudulent treatments for all kinds of serious illness. They are worse than harmless if they prevent you from seeking demonstrably effective treatments- even the frightening ones like radiation, chemo and surgery. Ask us about them. We'll be happy to share our experience with you.

5. I hate like hell that you're here, but glad that you found us. You are not alone!

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Sage advice to follow.Thank you!

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Shortly after I was DX'd with Stage 4 Metastatic Prostate Cancer, a very good friend and Bio-Engineering professor with personal experience in poor prognosis for his child - less than a year to live and no one has ever beat this disease - now 25 years later married and two children, told me, "Never forget that you are a Statistic of One!" Meaning, what matters is how your approach your life and how you respond to treatment. Stay positive and place yourself in the hands of your Oncologist and God."

This was over 14 years ago and without medication for the past seven years with mets resolved, still remain undetectable with no worries.

Kick the bastard.

Gourd Dancer

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Thank you. Your story gives me hope. I will share it with my family. Thank you.

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Thank you Gourd Dancer! For hope and inspiration for us beginning our journies.

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50% Chance?

A great statistic: 73.6% of all statistics are made up.

Good Luck and Good Health.

j-o-h-n Wednesday 01/10/2018 1:48 PM EST

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Exactly!

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Hi Dale!

Back in 2004 doc gave Elgie possibly 5 years. Here we are almost 14 years later. You are "HERE" The Best place..... with caring people and amazing knowledge 💖

Big hugs,

Jackie

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Thank you, Jackie. :)

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