Survival rates for prostate cancer with bone metastases

[EdMiller]

On various websites it states that the 5-year after diagnosis survival rate for those with prostate cancer with bone metastases is 3 percent. I believe that this listed rate may be out of date. Does anyone have a more current estimate of the 5-year survival rate?

[bluepacifica]

@EdMiller: My husband had his stage IV cancer metastasize into his tailbone in 2004. He's been on Lupron since Feb. 2005, had prostate surgery 2 months earlier and then received 7 weeks of radiation in the spring of 2005, the last two weeks were intensive on his tailbone. The radiation worked, he continues to be on Lupron and still leads a normal life, still defying the odds. Keep up the good fight!

[bryson43]

When I was diagnosed 11years the median survival rate was 3 years but around 10% lasted 10 years -with new treatment options the survival rate must have increased -my estimate is the median should move to 5 years and say 10% would last 15 years -hard to find statistics as doctors are reluctant to give estimates -in my case my treatment has been only ADT plus chemotherapy and my prostate is intact -PSA only 12 and minimal side effects

[CERICWIN]

With some of the new treatments, the old statistics are obviously outdated and irrelevant.

And, we are not statistics; we are individuals. I was diagnosed almost four years ago with extensive lymph gland metastases, and mets to spine and sacrum.

Xofigo (radium 223) has been effective for many individuals with bone metastases, and the new immunotherapies such as Provenge have been game-changers.

When I was first diagnosed, I looked up the statistics about survival, and since I had symptoms long before diagnosis, I should already have passed away by now. But Firmagon and Xtandi have definitely extended my life beyond the old survival stats.

CERICWIN

[BobChanin in reply to CERICWIN]

I was diagnosed 3 years ago and have bone mets everywhere, both adrenal glands and cerebellum. Have been on Zytiga for 2 mos and will start Radium 223 in a few weeks. So what do you guys think . . . will I beat you to heaven?

Bob Chanin

[BobChanin in reply to BobChanin]

I appreciate all the great responses, but I think I worded it wrong. I was actually wanting to know about anyone's experience taking Zytiga and Radium 223 at the same time.

Bob Chanin

[NiallMcC in reply to BobChanin]

I had a course of Radium 223 which finished last June. I also was receiving (Abirateron/Zytiga ) plus Zoladex/Goselin, both of which I still receive. I had no ill effects of any kind . My metastases which are widespread throughout my skeletal system and had been reduced by about by approximately 40% prior to the Radium by the anti testosterone treatment, did not change in character and this was regarded as a degree of success as they might have expected to start spreading again. If you have the opportunity, I would advise you to go for it.

Here in the UK, our NHS will only fund one course of treatment, but I believe the treatment can be repeated after an appropriate interval

Good luck

Niall

[tjohns45 in reply to BobChanin]

Hello, I am the RN/caretaker/(basically his only family) of my dear friend with stage IV prostate with mets to bone....I wanted to get in with these conversations. He was diagnosed in 2015, gave him 6 months...he even had a tumor removed in his stomach and that it gone now. He has been on Zytiga for more than 3 years, this hormone treatment just recently started to no longer work and we are starting Radium 223 next week. I don't know how to post on here yet, but really important, there is a med called Zometa (it is used to ? boost bone strength) infusion, that has a 2% risk/chance of causing osteonecrosis to the jaw, well my friend won the lotter, the med has eaten out his whole upper jaw on one side, so we have to wait to start the Radium 223, warning for anyone, dear lord that is taking that Zometa. my question...….how bad are the side effects of the Radium 223, my friend had little to no side effects on the Zytiga, more from the hormonal injections that cause hot-flashes, now that has been something else. how do I go to post thiings?

[EdMiller in reply to tjohns45]

I am so so sad to hear this. I have never taken Zometa nor taken Radium 223 so I cannot comment on either. I wish your friend the very best. To post on this site, just go to healthunlocked.com/advanced... and then click on the "Posts" option on either Line 2 or 3 -- that will take you to a new page where it asks the question "What's on you mind?". When you click on that, it takes you to a new page where you can write your own post (and give a title to it if you want). I hope that you will begin posting, learning, and receiving good advice and comfort from the group.

[Scruffybut1 in reply to BobChanin]

It's not a bloody race Bob. I intend to be the recalcitrant snail and take my time. All the best.

[pjoshea13]

Ed,

Whatever the bell curve looks like, you can always jockey for a better place on it.

For instance - get inflammation under control. But there is much else.

-Patrick

[BigRich in reply to pjoshea13]

Patrick,

How would you get inflamation under control?

Rich

[pjoshea13 in reply to BigRich]

Rich,

Put together a mix of polyphenols & take enough on a daily basis to control the markers.

Partial list:

curcumin

apigenin

resveratrol

quercetin

silymarin

epigallocatechin gallate

capsaicin

-Patrick

[BigRich in reply to pjoshea13]

Patrick,

Thank you very much.

Rich

[Charlesd in reply to BigRich]

3/7/17- just read these post about inflammation. Had missed that piece of puzzle with the MCRPCmy husband (82) IS AT THIS POINT - 3 years with MCRPC - 5 years stage 4 Gleason 9 seminal vessel spread- neck of bladder - lymph node positive at RP MAY 2012. He also has rheumatoid arthritis - last blood test with rheumatoid dr. (Feb 2017) sowed inflamAtion CRP AT -1. Takes methatrexate injections weekly . Could this be helping with inflamAtion level helping to still having him here?? Started radium 223 in nov. 2016. But PSA STILL at 56. So frustrated with differene in care & knowledge. Why has INFLAMATION SCORES & possible affects on his cancer. How do you know what to do next??? Is inflamAtion the SECRET PROBLEM WITH THIS CANCER AS WITH SO MANY OTHER CANCERS??

[BigRich in reply to Charlesd]

"sowed inflamAtion CRP AT -1." I believe, that is an excellent score for this biomarker.

Rich

[Reo4844]

Stage IV, bone mets 5 1/2 years ago. Was told I had a 30 percent chance of being alive after 5 years. No surgery, no radiation, Treated with various combinations of ADT. No significant bone pain the last 2 years. Psa 1.02. I am 72 years old, still active and looking forward to a few more good years.

[GabrielBFLO in reply to Reo4844]

Hi, Reo4844, and Merry christmas! I hope you are doing well. I'd be interested to hear about your experiences with "combinations of ADT," which I assume means alternative treatments, yes? If you respond I will share some of my own efforts.

[boc13]

Ed, I think you're right. Stats have not been updated and doctors are very reluctant to comment. I think the stories on this site confirm that. I'm much more optimistic than I was a few years ago. My husband was diagnosed in Dec 2006 with a final gleason of 9/10 after RPP. 8months after he did Lupron and 45 radiation treatments. His psa stayed at .01 for 4 years after radiation. He has done nothing past the 3 Lupron shots and radition. Almost two years ago it was confirmed mets to his clavicle. Ups and downs, but still working, pain, but doing ok. I think they will start him on a treatment plan in Sept. He's taking the summer off and doesn't want to deal with doctors. I'm very hopeful he will continue to lead a productive, albeit not perfect life, for a long time. Outook was grim when first diagnosed and that was almost 10 years ago.

[JoelT]

Assuming that you are asking because you are concerned about yourself.

The reality is that nobody knows when anyone is going to die, even men with prostate cancer. Any doctor etc. that tells you that you have 5 months or 5 years should be fired. Nobody can make even an educated guess because each of our cancers are different from the next person's cancer.

None of us have an expiration date stamped on our head.

So don't worry about the end but find ways to be in today because that is what really matters. Yesterday and tomorrow don't matter, today is what really matters to all of us.

Joel

[bluepacifica in reply to JoelT]

I remember Dr. Bernie Siegel saying that if a doctor tells you that you have a certain amount of time to live, you should walk out his/her door and find another doctor.

[Mags65 in reply to JoelT]

Thank you for those words, my dad (85) just diagnosed with advanced prostate cancer, he is to have bone scan in 5 days time then to start hormone therapy, will be seeing urologist in 4 months time. I realise that we may be too late to help my dad but we will certainly live every day as last day on earth, sadly my mum passed 4 years ago so I know she be watching over him and waiting for him to return to her, but like I say will enjoy todays for that is what we have, xx

[Hidden]

DXd with Stage 4, mets to L2 & T3 a little over twelve years ago. Everything that I researched gave me 2-4, maybe 5 years to live. Underwent a chemo trial immediately and stayed on Lupron until February 2010. No medication since. Today I am still undetectable with no sign of cancer in my body. I have quarterly follow-ups. Nada. Oh, I started taking a small, 4 mg, dose of Testosterone in January 2012...... My suggestion is to fine a medical oncologist that is in academia researching prostate cancer. I turned down job promotions to stay close to Houston........ Keep kicking the bastard.

Gourd Dancer

[bluepacifica in reply to Hidden]

@Gourd Dancer: Mazel Tov!!!

[brassea11 in reply to Hidden]

Hello, 54 yr. Dx in 2/16 With stage 4 prostate CA. PSA12 gleason 9, Mets to Pelvis & spine & rib. I had chemo and lupron PSA down to >1. Now 1/17, PSA back up to 6 . Now piss another ADT. What Dr. In Houston area gave you Testosterone? I am looking into estrogen reduction and testosterone therapy. Considering to relocate back to Houston from midwest for treatments. We have a house Northwest Houston area. Thanks, Jeff

[Hidden in reply to brassea11]

Jeff, I not not taking the high dosage of T regimen. Mine is merely 4 mg 2-3 times a week. It is dose only to bring back T. The treatment which you refer to is a Dr Liebiwitz plan. I do not know who in Houston dies this.

However I swear by Dr Robert Amato. He is a Professor at the UT Health Science Center and Director of Memorial Herman Cancer Center at The Texas Medical Center. He is primarily in academia and has research both Prostate and Kidney cancers.

I recommend that you visit him and see what he can do. Get him your scans and treatment history. [e-mail]

If you Google "Robert Amato DO", the first two listings are from Memorial Herman and McGovern Medical School.

Mike

[Johnstonearch]

I was diagnosed in 1999, Stage IV, PSA 30 with metastasis in the lymph nodes. I have bone emts now but we treat each occurrence with the latest approach possible. I am now on Xtandi and very active, work, play golf and travel for fun. It has now been 17 years! FIND THE BEST ONCOLOGIST you can and be positive.

[Lkjk in reply to Johnstonearch]

Pls give details of your treatment & best oncologists

[double-d in reply to Lkjk]

How do you find the "best oncologists"? My urologist sends me to a radiation oncologist and then an oncologist. I start radiation 8 weeks, 5 days a week, next monday. How would you know?

[BigRich in reply to Johnstonearch]

What year did your scan show bone mets?

Rich

[ShenStone in reply to BigRich]

1999

[BigRich in reply to ShenStone]

Is ShenStone also Johnstonearch, are you the same person?

Rich

[ShenStone in reply to BigRich]

Yes, got my emails mixed up in the beginning!

[BigRich in reply to ShenStone]

Thank you for your reply.

Rich

[ShenStone in reply to BigRich]

2003 for bone mets. Still have them in other spots now but they have been stable for a few years now. PSA is now .07 on Xtandi 1/2 normal dose continuous Lupron for 17 years.

[Disciple1958]

I just read a long article that added bone as an indicator of widely spread prostate cancer, meaning metastasis in many additional places. The new update said that 30% survive the 5 years but did not address anything else like total survival time. Overall treatments of local or Cancer only in the prostate said the 5 year survival rate is now 98%. Ed, if you are like me with spread PC we are limited in our survivability. I am at 4 years and 4 months. My cancer has been very easy, then went aggressive since January. Everything I read looks like I probably have 16-18 months left, or just short of 6 years. We will see. Prayers and hope, that’s the only thing I know to add at this point.

[Dan59 in reply to Disciple1958]

One never knows what our survival will be,I suspect that data may be old before the new treatments, Next month I will be 12 years out with widespead metastatic disease to bone at dx. What treatments have you done so far. I too am a Gleason 10, You can see my profile by clicking my picture. I think prayers made a big difference in my survival. Oh and quit reading those survival graphs, we are all individuals, and they can hurt our optimism, hope, and positivity all of which feed back on the immune system.

[EdMiller in reply to Dan59]

Dan59, the treatments that I have received so far include Lupron (which failed after 6 months though my oncologist still gives it to me), protestectomy (which I had to strenuously lobby for 4 years ago, Zytiga (which failed after 2 years for which I am very grateful for), Xtandi (which didn't work at all), Atezolizumab (an immunology treatment which I had a very quick and severe reaction to after the first infusion so the treatment was immediately terminated), SBRT radiation ( 35 sessions), and now I am Docetaxal chemo -- my 6th and final every 3 weeks infusion is on Tuesday May 14, 2018. The oncologist is not certain just where we go from here....

[Dan59 in reply to EdMiller]

Ed, Did you give xtandi a good 3 months, and did It steadily climb on xtandi? I think I was failing Lupron after 6 months too, it was bouncing up, Snuff gave me triple dose casodex exactly at that time, on the only time I ever saw him, and from then on I always had a 2nd line. How are you tolerating the chemo and what is it doing with scans and psa? I think You were a patient of Dr Myers, did you go to Dr. Sartor afterwards? I did 12 rounds of docetaxol last year, and yesterday i finished my 5 jevtana, I am going to try things that have worked for me in the past, there is some evidece that chemo can reverse the arv7 mution and allow zytiga and xtandi to work again, Up early working in the yard, just started raining here.

[EdMiller in reply to Dan59]

Dan59, yes, the oncologist kep me on Xtandi for 6 months just to give it a good try. My PSA doubled every 2 months. I was never a patient of Dr. Myers -- you must be thinking of someone else. I am tolerating the docetaxel very well -- I am very fortunate. So far, my PSA has dropped approximately 10 percent every 3 weeks (I get the treatment every 3 weeks) after each of the 1st four chemo treatments.

[Dan59 in reply to EdMiller]

That sounds like a good consistant response, I have read post on here from guys whose continued to drop after docetaxol, I think mine stayed stable for 3 months, Mine only fell 30% on 12 docetaxol. Then I started jevtana and it is slowly dropping again and I feel good , staying active.

[EdMiller in reply to Disciple1958]

Disciple1958, if you still have the URL for the update article that said that 30% survive 5 years, please reply and give the URL for that article. I would love to read it. Thank you.

[Hidden]

You guys might want to read the following

uofmhealth.org/news/948psa-...

Highlight is....

The researchers found 69 percent of the men maintained a PSA level of less than 4.0 ng/ml after seven months of treatment and 43 percent had an undetectable level of PSA at that time. Patients whose PSA was higher than 4.0 at the end of seven months survived 13 months, while patients whose PSA dropped below 4.0 but above 0.2 lived 44 months and those whose PSA was undetectable, below 0.2 ng/ml, lived 75 months.

[EdMiller in reply to Hidden]

Wow, I just finished reading the article!! Thanks so much!!

[Hidden in reply to EdMiller]

EdMiller

The link I provided shows the newest median survival rates. Half the men followed are living a lot longer than 75 months, (6.25 years ).

The lead study author Maha Hussain, M.D., professor of internal medicine at the U-M Medical School is a world renown prostate cancer specialist. She was my MO before she went to Northwestern University. She is as good as it gets. I started this stuff with a psa of 850, mets on bones and lymph node involvement. 10 months later after chemo my psa bottomed out at 0.07. She told me I should be good to go for at least 6,7 years based on my response to treatment. It's 3.5 years later, I'm still on only Lupron and my psa is currently 0.32. I'm happy as can be. Have faith, you have a long way to go.

[Disciple1958]

Is there any indication on what the last 2 years might be like? I had 3.5 with minimal anything, like Ed. Since this last Jan at 3.5 years the cancer spread to my brain with 2 tumors, something in my nerves and in my right side effecting my kidney. I have daily pain and with what they are giving me for meds now causes me to sleep 3-4 hours during the day and then all night. I am seeking changes so I feel good and can be active with friends and family. I would take that for 6 months versus feeling bad and unable to be with them but live 2.5 more years. Thoughts?

[EdMiller in reply to Disciple1958]

I understand completely. In fact, I have been talking some to the Roman Cathoiic Church about such consderations down the line. They have told me so far to read the following document, "Ethical Ethical and Religious Directives for Catholic Health Care

Services, Fifth Edition, United States Conference of Catholic Bishops" a pdf copy of which may be found at

usccb.org/issues-and-action...

They also told me to make an appointment with a local priest to discuss the document more in depth if I wished to after reading it. I have found the document very helpful, however, in helping me think about things.

Best to you in your tough situation,

Ed

[Disciple1958 in reply to EdMiller]

Thanks brother! God bless you!

[Bcsg]

I heard that Vernon Johnson had a heart attack like 5 years later.. I will look that up and see if I can verify.