My husband had his 2nd infusion today of Radium 223 and the nuclear medicine doctor told him that studies have shown that Radium 223 only extends life a couple of months. Just curious about others experiences and the recommendations about life expectancy? Thanks everyone!
Radium 223: My husband had his 2nd... - Advanced Prostate...
Radium 223
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MeliaQuinn
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Radium extends life a few months on average. Meaning that in some men it doesn't extend life much at all, but in a few men it extends it quite a bit. Since Radium has generally been given to men in the final stages of the disease, a few months is not insignificant. As far as I know there aren't large studies for men given radium in earlier stages of the disease.
I doubt that your doctor appreciates these distinctions, or understands it.
Recommendation about life expectancy: Live every day like it is your last.
Thank you! I know that much of this outcome is based on statistics and that every cancer is different but it was upsetting to me and my husband to hear “a few months”.
It was incredibly rude and insensitive of the nuclear medicine doctor to say that to you without additional context and explanation. I consider that kind of behavior a firing offense, but I have the luxury of living near a place where there are many doctors to choose from. Not everyone has those choices.
Too many of these doctors are incredible jerks. When my brother had lung cancer, the small-town radiation oncologist told his son that 'My job is to help people to die." Had I been there I might have slugged him.
Thanks! I really did not understand why he felt it was important to tell us that. It wasn’t that we were discussing being hopeful that this was a cure or anything of the sort.
Am I naïve or what ? I I thought their job is to help people to leave .
Formula, for all physicians the first rule: do no harm. That includes psychological as well as physical harm. Which may include family members.
I got lucky with my uro and he referred me to my onc. Love them both. I was never told anything but there is no cure but we can control it. In my case it is true, others not.
Nature of this beast
We had a similar experience (Though to be honest not that bad. Your story is shocking!). Some of these docs have very little empathy or understanding of what it's like to have cancer. What is odd is as some one stated below that part of their oath is to "Do no harm". What good is destroying someone's hope. Without out hope we have nothing. To destroy that in my mind is criminal. There are ways to communicate delicate information in a way that is truth full yet not destructive.
I agree - thank you!. Like I said, this doctor was not our oncologist. Our oncologist has always been supportive and positive. I almost wonder if this nuclear medicine doctor thought Radium 223 for prostate cancer was a waste of time. Or, maybe he was just having a bad day! He did say he had a cold, poor thing! Now I'm being snarky!
I totally understand I hear the same thing. It is hard.
Thanks! I want to, and don’t want to listen to doctors at the same time! It is a struggle but I think we need to also educate ourselves as much as possible. It is hard - most of us do not come from the families of doctors. We are no less smart though - we just have to earn another doctorate in something we had no idea that we would have to pursue! Best to you!
IMHO that is not acceptable. I fired a young MO at Penn Med in Philly for similar comments 6 months into my 2 year battle. A couple decades ago a dear friend was diagnosed with Breast Cancer. She had 27 diseased lymph nodes. Her Doctor responded when asked about the prognosis, “Neither the patient or the Doctor are mathematicians or probability experts and I will respond by saying we have excellent results with many people treated the way I am an acceptable answer. Survival statistics are not.
My Doc was prescribing ADT and I asked him about an article I had read. He said there are some studies that suggest that will add 18 months. My wife and I gasped. I just turned 64. I asked 18 months on top of what. He said 5 years. I thought for a moment and looked him in the eyes and said, “I was stunned by his grim choice of words.” He apologized and said it wasn’t his intention to make answer that in a grim way.” I responded by suggesting words are very important and he should give more thought to how he answers questions. I was polite.
I never went back to him which leads to many other anecdotes.
In sum, I want to hear about success and signals treatment is working or signs that alternatives should be explored.
I went to a business school, took statistics and got an A. While not precisely the true definition of the numbers Docs use, I choose to look at those numbers in the frame of reference that I have the same chance to out perform as to hit the number or underperform. I have A’s in practically every exam I ever took, and I want my team to help me get back there.
The only A score I regret is getting 9 out of 10 on the Gleason exam. Definitely would have preferred a birdie rather than a Quadruple bogie. Mixing metaphors because as I wrote I decided golf where low scores are better is more appropriate way to think about this.
It matters to have people help you keep a fighting positive attitude so you can bounce back more quickly from the inevitable bumps in the road.
These doctors and their robotic parroting of statistics are everywhere. It's infuriating to me, and god knows how many people have died because doctors put them into numerical columns on spread sheets in the latest update of Excel. They've got the same mentality as the epidemiologists and other ivory tower types who are still proclaiming that men younger or older than a certain age should not get PSA tests because it could cause "overtreatment." They say this in all seriousness, citing risk factors, oblivious to the real lives of men in their 40s who thanks to a PSA test discovered PC early when it was treatable, and when it comes to older men in their 70s they just blithely say don't even bother since statistics say you're not going to live much longer anyway and something else will probably kill you before the PC can. Forget quality of life created by fighting PC as well as possible, even to a draw if not cured at whatever age, forget that statistics have nothing to do with a person's individual life, forget that people are not statistics but living, breathing, loving human beings, unique in all the universe, and that what is true for one is not necessarily true for another. With that mentality these doctors have missed their true calling: if they insist on seeing people as numbers, they should have become actuaries.
Regarding the mentality on PSA testing being a problem due to "over treatment" I refer to a study referred to in the following:
Trends in Metastatic Breast and Prostate Cancer — Lessons in Cancer Dynamics
List of authors.
H. Gilbert Welch, M.D., M.P.H., David H. Gorski, M.D., Ph.D., and Peter C. Albertsen, M.D.
October 29, 2015
N Engl J Med 2015; 373:1685-1687
DOI: 10.1056/NEJMp1510443
It compared metastatic breast cancer to prostate cancer actual rates over the last 50 years.
This time frame includes before initiation of the psa test and initiation of routine mammography.
The conclusion, supported by a graph, is that the numbers for mets in breast cancer are unchanged - no improvement from before mammography.
However since initation of PSA testing the nets numbers have drastically decreased. Significantly better!!
Yet "over treatment" is cited as a problem.
Seems more like a major benefit to me.
The real question is does screening reduce deaths? From bmj.com/content/362/bmj.k3519:
"This corresponds to one less death from prostate cancer per 1000 men screened over 10 years. Direct comparative data on biopsy and treatment related complications from the included trials were limited. Using modelling, we estimated that for every 1000 men screened, approximately 1, 3, and 25 more men would be hospitalised for sepsis, require pads for urinary incontinence, and report erectile dysfunction, respectively."
My 4 PSA tests leading up to my diagnosis went something like 2.0, 2.5, 2.0, 216.0, sorry, you have incurable cancer with widespread metastases. It seems PSA testing is poor at detecting aggressive forms such as intraductal carcinoma, but better at detecting slower growing, less aggresive forms that wouldn't be fatal in the next decade if left untreated.
Well my personal take on the correlation between metastatic occurance and deaths is this.
First I have Gleason 9, aggressive prostate Cance that has come back three years of NED.
While the death rate has not seemingly changed the mets has dramatically improved. This means significantly fewer men have had to go through the terrifying metastatic stage and those that have were treated successfully for the most part.
The level of deaths not changing simply means that there are still things about prostate Cancer that are to be discovered.
Also there needs to be seen if there is a correlation to those deaths and other health issues or even age.
Some could be the younger men that have a higher death rate or others could be men that are frail to veging with. In other words are there things in their condition that contribute to their physical condition. Possibly mental?
When you say mets have improved, are there fewer cases of metastasized cancer in absolute numbers? Or a smaller percentage of the diagnoses are metastasized? Obviously if you are catching more cases of less aggressive cancer with screening that would otherwise go undetected, it will dilute the aggressive cases you'd eventually know about without screening.
I am conflicted as to whether I'd recommend PSA screening to other men, as I'm the perfect example of it not working. That said, if somebody has any symptoms whatsoever, a PSA test should be done. Curse that walk-in clinic that didn't test my PSA when I had blood in urine!
Well the report I cited states that when the PSA test was introduced the metastatic prostate Cancer was 70 per 100,000. By 2010 the rate was 25 per 100,000.
The deaths might be from those that didn't do the PSA test, like me, until mid 60's. Gleason 9.
If earlier very well might have been Gleason 6 and quite curable.
Of course men in their 30's are found more with advanced, aggressive prostate Cancer will have a higher incidence of death.
I still say that in the above two situations with aggressive prostate Cancer much more research and better understanding needs to happen. But the psa test is not done as routinely as mammograms nore early enough.
Looking back if I had had a osa test yearly starting at 50 I feel I would have been diagnosed early at a stage where cure would have been possible.
The worry of sepsis, while real, is much overblown.
Yes, more research is needed. You are assuming that aggressive cancer starts as a lower grade, less aggressive cancer, and I am anecdotal evidence that isn't always the case. I have cancer in many bones, but the left side of my prostate is all but cancer free. We who have have been diagnosed with "prostate cancer " may be dealing with several distinct types of cancer. More research and hopefully a better screening test are needed.
I do find it interesting that I have an aggressive cancer that so far has been very responsive to treatment, while other men here have slower growing cancers that resist all treatments and continue to progress like a stalker in a horror movie.
Lucky for you you are responding to treatment, which is????could you tell me pls.
My history is in my profile, but briefly I'm currently on (big inhale) Lupron, Xgeva, Abiraterone, Prednisone, Celebrex, Atorvastatin, Bupropion, clonazepam (as needed), and now 10 days of Bactrim for possible prostatitis.
Also taking vitamin D and K, an occasional B12, calcium, eating more broccoli and fruit than I used to, and I run and walk 20-30 miles a week.
You are not unusual. Aggressive prostate cancer on one half of your prostate at Gleason 9 that has spread does not mean that a year or two earlier it wasn't a lower grade.
Not sure if studies have been done to support this but in my case 18 months earlier I was at PSA of 14. At diagnosis was 20.4.
Studies need to be deeper into the DNA of the cancer or follow men that test different levels of psa, like me, that wait then biopsy later.
Looking at how the Gleason score is rated it seems likely that the Cancer starts slow and for some reason accelerates to aggressive.
That is the key in my mind.
What if I were that "one less death"? I could of been a contender.
Knowing my luck, I'd be the guy in the hospital with sepsis, but hey, if it saves your life I'm willing to suffer a little.
Yeah, that would be my luck too. Like some others here, I am angry that I wasn't given a PSA test until I was 66 years old, and told I have incurable stage IV metastatic prostate cancer. I was never given a choice. Maybe it was a good thing I didn't have the choice. Maybe it will work out better for me this way. But I do have a hard time convincing myself of that. Enjoy your weekend.
I strongly feel that a PSA test needs to be done annually starting at 50 just like mammograms and earlier if prostate xancer is in the family.
I agree! I have a 26 year old son and since my husband was diagnosed with Stage 4 metastatic cancer to bones everywhere at the age of 53 I wonder when he should have his first PSA test? I am thinking maybe age 30 just to get a baseline?
Since the test is just a blood test and actions after a high psa are safe I agree.
I know some will cited issues but lives will be saved from ises in the future
My husband was diagnosed at 51 with a PSA in the 980’s, stage 4 with Bone Mets. We just had our 21yo son tested just to be safe and to have a baseline.
It's best not to think into the hypothetical future, but live every day in the present. No one knows how long they have really, so we can just take each day one at a time. I found out early on in this process that we can't use statistics to try to predict the unpredictable.
People have asked me how long I think I will live. My answer is: Today.
Wishing the best for you and your husband.
MeliaQuinn in reply to
Thanks-what you say makes sense. Wish it was easy to do.
Did the nuclear medicine doctor tell him that the studies had your husbands name on it? Doctors like this need to be cleaning floors. Jackass.
MeliaQuinn in reply to
Thanks Fran2020! He was nice enough-I just didn’t understand why he thought he needed to point that out? As if, after dealing with this for 2.5 years we don’t know the end game.
What a thing to hear from your Doctor...... it’s like a gut shot .. No decorum ..
whatsinaname in reply to
I am ready to bet that the doctor did not volunteer that opinion but was asked for it.
Actually we did not ask for it. He began with explaining the safety precautions we needed to use once we got home and then added “this is not a cure but studies have shown that it extends life by a few months”.
OK, so I would have lost the bet, had anyone taken it.
And, I also think your "doctor" was right in explaining
what he did. No big deal, imho. If it does extend life
by a few months (on average), then why not say it out
straight ??
To each his own.
Goes without saying.
in reply to MeliaQuinn
I disagree with others here. Your doctor was being honest and truthful, nobody should fault that. I've had 2 other doctors tell me the exact same thing. Radium 223 is actually better than the previously-used radioisotopes for prostate cancer such as Strontium 89 which has no life extension.
The key here is to try to find the best treatment available for you right now.
The targeted PSMA radioisotopes such as LU-177 and AC-255 are better then Radium 223 since they go to all cells that produce the PSMA. Is there any way you could get access to these treatments?
Tall_Allen in reply to
"The targeted PSMA radioisotopes such as LU-177 and AC-255 are better then Radium 223 since they go to all cells that produce the PSMA. "
I don't share your POV - I don't know if one is better than the other. The problems with PSMA-targeted therapy are that:
(1) PSMA expression is heterogeneous (both within tumors and across tumors) and varies over time. So, not every tumor is targetable with it, and even in a PSMA-avid tumor, many cells can survive.
(2) Because of the above, PSMA-targeted treatment puts selective pressure on cells that don't produce PSMA, perhaps causing a faster rebound of the cancer when competitive cancer cells are killed.
The problem with Xofigo is that it only works on bone tumors (but it works on all bone tumors with bone turnover). I would guess that optimal use in advanced PC with bone mets would be Xofigo and docetaxel first (to debulk) followed by PSMA-targeted therapy.
I also think that new non-PSMA-targeted theranostic radiopharmaceutics need to be developed:
pcnrv.blogspot.com/2017/03/...
Thanks-that is the road that we are expecting to travel!
in reply to Tall_Allen
You're right, I don't agree with you on this. My point of view is the same as my doctor so I feel that I am in good company there.
I think that LU-177 in particular has shown a lot of promise in the small phase 2 trial in the US plus some of the results coming back from Europe and other places although I am aware it hasn't worked for everyone. We'll learn a lot more when the results of VISION trial are published.
In the meantime, I'd rather not get into a pointless argument on this subject. I would rather encourage people here to do your own research and of course discuss it with your doctor.
Tall_Allen in reply to
Far from pointless. I'm certainly not disputing the great early results from Lu-177-PSMA-617. In fact, I was one of the earliest advocates. I'm just saying that there is as yet no evidence that it is better or worse than Xofigo, in spite of what you, or your doctor, may believe. (I would guess that your doctor would agree with my comments, which he obviously has not seen.) We have the results of Phase 3 trials of Xofigo, which also were very good, but not yet for Lu-177-PSMA-617. Meanwhile, I think it is important to understand why it may work well in some patients but not in others - just as Xofigo works well for some but not for others. In the coming years, these very important questions about sequencing will be examined.
whatsinaname in reply to
100% agree with you gregg57. Inasmuch, all rational people on this site SHOULD do their OWN research and discuss the matter with their doctors.
Taking as "gospel truth" what people say here (however freakin' knowledgeable they might think they are) is SUICIDAL, nothing less.
MeliaQuinn in reply to
Thanks, I appreciate the information and your concern!
whatsinaname in reply to
Well said, gregg57.
Nicnatno in reply to
We'll said Gregg
in reply to MeliaQuinn
That is sorry.😩
Like many therapies, it extends life more if used earlier in disease progression. It can even be used again later on.
Thanks! I have also read that some men are combining Provenge with Radium 223.
When I was a child in Czechoslovakia doctors did not even tell their patients that they had cancer so that they would not get depressed. That was going too far but giving the patient estimates of their life span is equally bad in my opinion. Especially since they do not know it.
Thanks - this is such an emotional roller coaster. Of course we don’t want our doctors lying to us and giving us false hopes but I’m not sure that it is helpful to tell us the number of days/months/years we have when this info is based on statistics. We have a very great oncologist who always couches outcomes as “that is what we are hoping for , etc.”. We know that there is not a cure and we are all just doing the best we can!
As commented previously but before reading all the posts, flat statically terminology is a poor communication technique for patients. It often results in OMG I am going to be gone in 3 years reaction and the many of us tune out and frame the rest of our thoughts in terms of the date we are going to die.
There are better and honest ways to communicate and support cancer patients.
Keep hope alive.
The FDA does not consider the cost of these drugs before they approve them. The cost is usually unknown to them...That should change and the cost / benefit ratio should be considered before the drug or treatment is approved..
in reply to Fairwind
True. I was dicsussing this with my doctor at the last visit. He said that they only need to show a small benefit to get FDA approval whereas in other countries the cost vs benefit is analyzed to determine whether it will be prescribed. He also said that in the "cancer world" a benefit for 30% of the patients is a big deal in the US.
You probably will do more treatments after Radium which is why survival stats are not accurate. I did LU177 trial and they said they think it is extending life a few months on most, and more than that on some based on trial experience. I got out of the trial after my last infusion and am already looking at some chemo rounds of cabazitaxel and some spot radiation after that. Each life extension adds up. I was also told that after LU177 is approved, perhaps late 2020 if lucky, I can do it again and insurance will pay it. Another extension.
Thanks abmicro! Yes, it seems to be one treatment after another-but like you said each one extends life for awhile. And we are all aware that treatment may work or may not, and if it works we do not know for how long. Best to you and yours!
We are definitely fight a war, battle to battle...All we can do is keep the faith and battle on....docs like that do not help moral, and moral is important for the troops! As someone recently said to me; “ We are all in the same lineup, it’s not like there are two and one of them is going to get out alive. Fact is, none of us really know how close to or far from the front of the line we are so all there is, is to live your best days, and cherish your time.” So true, and for some reason, very comforting. Keep fighting this demon, and while you’re doing it, live your best days.
Thanks Flydoggy! Keep going, as Winston Churchill said “If you are going through hell - keep going”!
Wow if it only extends life a couple of months. Is it really worth it 😢
Yes, all the little "partial" life pack you grab in this game adds more time to your life.
I would say yes, if you still have a quality of life worth living. So far (and my husband only recently had his second Radium 223) he has had almost no side affects besides lower blood counts. It has also significantly improved his overall bone pain so that is a good thing!
in reply to MeliaQuinn
I agree. 2 or 3 months are well worth living if the quality of life is good and of course you could be lucky and get more than that. Wishing you both the best.
MeliaQuinn in reply to
Thanks Gregg57 - cheering for you too!
Sounds great to me
Oh yes its worth it...if your life is still worth living and u are not scrunched up in a hospital bed in agony...if you can still walk eat travel ..3 months ..i take it. And who knows what you can pull out of your magic chest of other ammunition to fight for another 3 months..
This is the great moral question of our time. I just read the detailed instruction package for abiraterone (Zytiga). The median increase in life expectancy for 1,000 men taking Zytiga is approx. 4 months (!). At a retail cost of $9,000 / month, the question is: is it worth it?
My wife says "yes," especially if I end up above the median (above the 500th man).
That’s the big question, no one knows which one of us will be the one that lives longer Hating this monster. 😡😡🙏🙏🙏
👍🙏
No doctor has a crystal ball to determine e d of life. We were told to expect 12 months at best. That was 3 years ago! Hang in there no one knows how long any of us have on this earth!
MeliaQuinn in reply to
Thank you - keep going strong!!
They have no way of knowing, so I don't know why they give such precise answers. Anyway --- I was just reading that Radium-223 can be effective a SECOND time if needed. Hang in there!
Thank you! Best to you!
I will begin my Radium 223 series in a week. Studies I have read recently shown better results than earlier studies. Averages now are 22.5 months verse earlier studies with 14.4 months. We have to understand that these are only studies with limited participants. Even though Ra223 has been around since 2013, it is still considered a fairly new treatment option.
Thank you and I hope the Radium 223 works for you and everyone on it!
"A life well lived is long enough." -Richard Dreyfus in the charming movie The Astronaut.
And so then further: "A life well lived is the most exquisite work of art." - Ervin McManus.
Well said! I also like Jack London's (1876-1916) view on life "The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time".
in reply to MateoBeach
You only live once, but if you do it right once is enough. Mae West
My husband's last Radium 223 treatment was 8 months ago... He remains "in remission". His Oncologist is a GIFT FROM GOD, he is a cancer survivor himself and a man of GOD... we consider ourselves beyond blessed to have him on our team!!
So good to hear that your husband is doing so well!
I think that is just an average and takes into account the people for who the treatment doesn’t work.
I am 3 months past my MO's given expiration date of one and a half to two and a half years. Dr. Google's stats were even worse. Due to response, MO changed expiration to many years. Before expiration was changed I lived in a dismal wasteland. With so many of these drugs only a few years old, and others coming on line, and personal response, treatment sequencing and on and on, it is almost the wild west. Everybody's guessing, and everybody's hoping. Maybe, on average, ADT adds a few months, chemo adds a few months, Xtandi adds a few month. Those have added up to over two and a half years for me. And they have been good years. I had a skeletal event before I was even diagnosed. Spinal compression fracture. Survival statistics equals one percent make it five years. Maybe it's a pipe dream, but I think I have a good chance to make it five years. Thank you Xgeva. And with the new treatments, who knows? Maybe another five. As the other wise people here have said, "Live for today". Good luck to everyone.
Wild West is a good analogy for this experience! Keep on keeping on!
Melia, my MO told me in the first meeting that I was going to die from this disease.
I was shocked for him to say that, even after my urologist pretty much clued me in after my biopsy to the seriousness of the disease. I've grown to like and respect my doctor!
That is great! We love our oncologist too! I think the nuclear medicine doctor was just off beat with his information but whatever.
I should have added; however, that I still do not agree with what both your urologist and mo said to you.
Glad your husband is getting Radium 223. I hope it knocks the PC real good. Regarding the negative comment from the RO, that doctor has a lack of bedside manner. Beat the cancer and blow the stats up! Good luck for your husband!
Looks like I sent a reply to myself? Was supposed to go to you!
Life is a joke and death is the punchline.... (forget that couple of months comment).
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 11/08/2019 9:12 PM EST
Thanks Fanger1! The doc that said this was a nuclear medicine doc, not our oncologist or our radiation oncologist. Not exactly sure how the nuclear medicine docs get trained to deal with patients 😳 Our oncologist and radiation oncologist have been wonderful and we feel very lucky to have them as part of our team! Best of luck to you!
Good to know you've got a wonderful team and making progress with Radium! Take Care😸
And the best to you with your treatment!
I was dx with the dreaded stage4...bone mets etc...by a uro who when doing dre ...before the biopsy said...just feels a little "mushy"...psa went from 6-12 in mo.....anyways as i stood staring out office window....i said...what if i dont do anything.....2years tops....well i became a luprochaen....got in titan trial....luckily it was earleada and 33 mos later ..im still going at it...albeit with bone pain..hot flashes and fatique like evrydays a 12rounder...but ive seen my grandaughter born...im not sure what future holds but p.s.a has doubled twice in 33mos....to .1......dont be so hard on the doc...what was he suppose to say .......
Sounds like you are doing well and I hope that it continues for you!
I will start this treatment soon, none of my treatments have been talked in the context of increasing my life expectancy, just in improving my quality of life.
I have extensive Mets (almost to every bone in my skeleton) I struggle with pain and neuropathic spasms, they're just trying to make my journey as easy as they can. All the staff in the Hospital have shown amazing empathy.
I really hope it works for you. My husband was only able to do 3 of the 6 rounds.
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