My husband, 60 yrs old, dx with mpca in Jan has had Lupron in Feb and May. PSA was always low, only went up to 4.1 pre treatment, then down to 0.3 before inching back up again. Now he is scheduled to begin Docetaxel next week. We understand the doctors reticence in giving us realistic life expectancies, but can any of you answer? He is in good health and exercises 6 days a week. His cancer is adenoma and has gone to two places in his spine and one spot on his hip besides the prostate. No liver or lung involvement. Our best to all of you fighting this cancer as we are.
The hardest question....life expectancy - Advanced Prostate...
No one knows, advance prostate cancer (PCa) is unique to our biology makeup. Please take the time and review posts here that have PCa Metastatic condition with bone metastasis. Given the information, your husband is considered Oligometastatic, meaning 5 or less metastatic sites, thus "initial indicator" of not having an aggressive cancer type.
Ok, you got some some buzz words here, learn and take notes and please ignore Google statistics, they're useless. PCa treatments these days are amazing, will make you dizzy, you have plenty of time to digest and take notes please.
And, finally, you've come to a great place, voices from patients like you...
Oh, forgot to provide a link that simply describes "Gleason Score", an indicator that is discussed early with PCa diagnosis:
No one knows, not even the most brilliant prostate cancer oncologist in the world. 5.5 years ago they told me I might make it 2 years. Last weeks scans were clear and my psa was <0.1. A long way from a psa of 850 with multiple mets and extensive lymph node involvement.
Posts like this give me hope
Health unlocked has kept me going I cant thank you enough
I was anxious and very nervous after my scans after chemo
And my anxiety was needless
The scans were impressive and only show 2 small areas in the 7th and 8th rib
Moving on to targeted radiotherapy this month to the prostrate
I learn daily from others here
Mine was prostate, vesicles, lymph nodes, pelvis , dirty margins, sacram, iliac, and spider web of nerves and veins through out abdomen at start of chemo. two and one half months after surgery. Pre-prostatectomy showed all contained, but scans missed all small mets that exploded between surgery and chemo. Psa climbed from 53 to 63 at six week check-up. Drs said "sorry we were wrong, You have 12-18 months to live."
Docetaxel 9 cycles adding Xtandi at cycle 5 and continuing Xtandi after end of chemo. Drove PSA down to 0.13 , but Xtandi full dose made me a complete invalid and had to cut dosage to 80 mg/day to get a life back. Now still on Xtandi, in remission, off Lupron for life with orchiectomy and proceeding with zero testosterone life. Over three years into fight and PSA fluctuating in 0.1 to 0.08 range.
Don't look up life expectancy predictions. They are usually way off and based on old info and before drugs now available. Best of luck to you and don't worry your self into a tissy. I wouldn't recommend more than standard 6 cycles chemo with your stats. Way better than were I started.
Click on my Username to see my Profile. Longer term survivals with high disease burdens can happen. We are all "statistics of one", which includes our supportive medical teams, treatments, and some biological "luck" thrown in there, too.
My advice would be to try to let go of much of the "shoulda, woulda, coulda" ruminations about the Past. Plan for the broad Future for your family and shared lives together without going overboard on the "speculation and worry" of a Future largely unknowable in its details. Live well and be loving and grateful for what you can share in the Present, regardless of the details of the medical circumstances or changes in day-to-day life.
Easier said than done, of course. If in doubt, share your deepest thoughts and emotions, and share Big Hugs. I've heard that they have certain inexplicable healing benefits.
"I may not be Cured of my disease, but I can often be Healed in many ways."
It goes like this.
Good morning Doctor Smedley.... can you tell us how much longer Harold has to be with us? Oh 6 more years. Thank you doctor, now can you give us tomorrow's winning lotto numbers? Thanks again and have a nice day.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 07/02/2020 10:15 PM DST
John - Big Bad j-o-h-n!
I made my doctors tell me . Thank God that they were wrong . Doctors can give us stats but that doesn’t mean that we all fall into those stats. Many here have lived ( some for decades) longer than what their doctors first told them. Let us face it . With APC most of our life’s are shortened. Only God knows these things. One lesson this can teach us , is to live in the present as much as possible . He sounds darn healthy beside the pc . Thats what My doctors told me . Good Luck Sandra , your love and caring is the best medicine of all . Thank you Scott
So hard to say. Hopefully he has the best damn medical oncologist available that specializes in prostate cancer not some other cancer like breast, lung, etc.
At 56, I was DX’d with PCa, Gleason 7 (4+3). I had Brachytherapy and 25 sessions of IMRT. It didn’t work as micro-metastatic cells had already escaped into my lymphatic and vascular network. So at 57, I had mets to T3 and L2 with PSA at 32.4. All the numbers said 2-4, maybe 5 years. I sought out a researcher and enrolled into a clinical trial of chemotherapy plus Lupron.
Today at 73, I am undetectable with a PSA <0.1.
Stay positive, shun negativity. Accept Prayer from all and move forward enjoying life while putting your faith in our Creator and the skill of your oncologist. Since I started there are multiple new silver bullets to use if needed.
I started chemo early under the hypothesis to systemically attack the cancer while your body is strong and the tumor burden minimal. It has worked for me. I feel so blessed.
He will do fine and rather than worrying about how much time is left, slender your time looking toward the future.
Just curious - what was the chemotherapeutic agent in the trial you took part in along with the Lupron?
Have the trial number re dosage etc?
I am castrate resistant and in the middle of Provenge immunotherapy
Thanks for taking the time to answer. My husband is scheduled to add IV Docetaxel to his Lupron this Thursday. We too really cherish prayers and positive thoughts, it’s nice to see you put it down in words. I forgot to write in the initial post his Gleason score was 9. We thought after the Lupron started In Feb. and the pain decreased we would have more time before more intervention was needed, sigh. What chemotherapy did you use besides the Lupron? All our best to you in the future, and thanks again.
Do you think it was the chemo specifically? And that other systemic treatment (ADL) could not do the job? Curious for my father.
No crystal ball here. I'm guessing things will be ok for many years. Possible curable? But once again, no one here has a crystal ball.
I've got 2 😬.
All the best to you all, keep fighting !
It's the elephant in the room question that everyone has danced with. Lot of good comments, one day atta time.
Medical people make a vast breach of the foundamental laws of statistics: They apply ONLY when the group under study is homogenious. Example : An automated manufacturing line making semiconductors. Some of them will have higher specs, and will be sold at a higher price -think about CPUs- coming off the same silicon substrate. Humans are that complicated that 2 exact copies including twins, is very scarce to find. Consequently, they are performing statistical analysis on a basket of different cases in an apple to oranges manner. Don't they know the nonsensense they are making? The majority probably yes, but as noticed in many papers a statistician is part of the group. This one should know! Yet, they go about and use such a flawed methodology because they have not something better and to the layman a bunch of nonsense sounds more "scientific" compared to a plain honest answer: "We really don't know". Please IGNORE and do not ask to be BSted.
No answer to that one though it is unlikely that he is in immediate danger.
Prostate cancer can just bumble along in the background for years or it can take a sudden and dramatic turn for the worst.
Personally I would rank his chances of making five to ten years in reasonable health as good with a possibility of doing more than that.
Obviously a sixty year old in perfect health has a better chance of living another decade than one that has prostate cancer, etc but there is always the unforseables like the bus to Alberquerque.
Sandra, I was diagnosed At age 67 with advanced pc last February, Gleason 9, PSA over 68, metastasis to hip. Lupron shots, Abiraterone, exercise, diet and naturopathic regimen have brought PSA down to .66 as of mid May. My doc says we are taking it a decade at a time. I have several friends with similar stories, advanced pc, living long and enjoyable lives. With new treatments, lifestyle changes, and a fighters attitude, you may have to put up with your husband for years to come. Untreated, most men survive over 5 and less than 10. With treatment and healthy habits, it can be decades. I recommend setting a target. Mine is 90, 23 years past diagnosis, then I’ll reassess and shoot for 100. It’s possible, so reach for every tool you can muster, and live your lives fully.
Brilliant, I agree with you, I am up for 90 years old as well.
I reckon if I can still drink my glass of whiskey without spilling a drop at 90, I am going to aim for 95. What do you reckon ?
If we spill a drop, may we be quick enough to move our mouths to catch it. My original plan was 110, 100 years to get it all in, and 10 years to chill. Now I’ll take 90 with an option for 10 more. Don’t want to go until I’ve pissed off or kissed everybody on my list.
I use a straw...........
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 07/03/2020 2:52 PM DST
No wonder you have an ex-wife. Was that plastic? Flexible? Reusable?
Yes if you're asking about her dildo? She used it with her boyfriend and had a logo on it...."M A G A' - Make America Groan Again"......
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 07/03/2020 10:36 PM DST
I'll drink to that Phil 🍻.
I'm a bourbon guy. Long before my diagnosis I put aside an expensive bottle of Pappy for a special occasion. I'm not going anywhere before I crack it open... I'll be shooting for 90 too!
Sound like a wonderful plan! Glad to hear that you are doing well!! My father is also G-9 bone mets. Did you do monotherapy or ”hit it hard and early”?
Hit it hard and early. Lupron, then a month later Abiraterone, went from PSA 68.63 to .66 in 10 weeks. IGRT starts August 31 for 9 weeks. Gleason 9, locally progressed with one met to right hip. Docs can’t promise a cure, but expect to put it to sleep for a long while, taking it a decade at a time, in their words. I’ll take it. Plus naturopathic and diet regimen with daily exercise. Acts like natural chemo. Plus have rabbis, priests, sufis all praying for me, which can’t hurt. I may have cancer, but it doesn’t have me. Thanks for the comment.
I love your story..Myhubby58 was diagnosed July 2017..he has been hospitalized several times..his psa right now is .910..it was over 1000 but came down a little.we really don’t know what to think at this point.. he has stage4 pc metesis, lymph nodes, liver,lungs,legs and pelvic pain,spine and there is a pain since 2017 in his left back side that never goes away.. I also believe he is castration resistant..right now he is on cabotaxel every 3 weeks and lupron every 3 months.he has also been on casodex,xtandi,zytiga,xetega, none of that worked for long periods of time.. I m so hurt to watch Myhubby58 go through this..
I’m 56...just finished Docetaxel and starting Provenge at the end of July. I plan to live till at least 90...I’m more determined to survive mcpc now than ever before.
You and me both. Best of luck. I also had Provenge in March 2019. Hitting it as hard as we can. Here's to long life!
Have a great weekend! Happy 4th. Many more to come
Absolutely. L'chiam, to life!
When Do you recommend to take Provenge?
I understand that recent studies have shown that the earlier in the overall treatment process the better. I had mine 10 months after initial diagnosis.
Thank you! But I understand it is only for CR? Or do you mean for HS too?
Love your attitude! I'm in the middle of a course of Provenge. Definitely recommend the central venous catheter placement vs your arm veins - makes the treatments a breeze.
When I was diagnosed my doctor told me I had 5 to 10 years. That was 27 years ago.
I was diagnosed with APC at age 57 in a similar situation. Taking a proactive approach, being my own advocate and pulling out all stops on the beat treatments and staying alive. I decided to go for 10,000 more wondrous mornings and more days of living and loving. So that means 27.4 more years of life before I give up this body with a smile on my face. Don’t go easily into that goodnight -Until finally life reaches fullness and I can say “Enough”.
And remembering “A life well lived is long enough”. (Richard Dreyfus in The Astronaut)
Hope that is neither too morbid nor too naive. It is just an attitude of embracing life and not accepting limits as long as there are options and I have something more to give. Paul
I was DX’ed i n 2006 at 60 y.o. since his primary treatment has failed, I think his early start of chemo regiment will help him manage the cancer growth. Don’t worry about life expectancies. With good Oncologist and current state of medicines he will have many years to go, the LORD willing. Stay active and enjoy life, do bucket lists, and live each day as Lord guides him. Since 2006 I have had radiation, chemo-hormonal, and currently on Zytiga (3rd year, and I am still active doing volunteer work and disaster relief activities, and tennis 1-2 times a week.
I dont think anyone can predict that
Many guys here with a worse prognosis are living with APC for 10 15 20 years some even more
Have faith in medicine and healthcare today this 2020 we have come a long long way
There are guys here that are very helpful indeed
Tall Alan , Nalakrats , John
And many others
My husband was diagnosed Stage 4 from the start, in May 2019. No symptoms, just cancer. He is doing very well. His PSA is 0.05 a few months ago. I did a lot of research, but the main thing I kept thinking of was me. I was diagnosed with Triple Negative Breast Cancer in 2013. The most aggressive type. My chance was 52% I would live 2 years. 7 years and I am still here. I was almost taken out, last May, a week after my husbands diagnosis. Someone ran a stop sign and I was flight for life to a trauma center. Two brain bleeds, but here I am typing this. You just never know what will happen. I am a planner, so I had to change some. I use to plan for years out, now I plan 6 months out. Still planning and doing. Hope all goes well with your husband. Hang in there.
Sandra, plan ahead, for the sake of you both and the family.
Our love to you both.
Phil and Mrs Phil x
One of the first things we do when we are are diagnosed is to try to figure out how much longer we have to live. I did it too. We have some general statistics we can look at, but we have to keep in mind there is a large range and we can't use statistics to predict the future. He could live 2 years or 15, or even die from something else. There are so many variables.
I find it interesting that we never asked the question of how long we will live before diagnosis, as if death was not even relevant. Before diganosis, I lived in what I called the "immortality bubble" which is really just an illusion. Now I must live in the truth regarding my own mortality. I've found this to be a great opportunity for learning and growth.
The best thing I can recommend to anyone is learn to live fully in present tense. The most important thing I've learned is that there really is no future so when someone asks me how long I think I will live, my answer is "Today".
That’s exactly what my husband and I feel- we don’t waste time. We laugh and love without reservation
I have a few thoughts:
Until your husband has exhausted all treatment options, I would doubt anyone would give you a figure.
It's not easy to "exhaust all treatment options," as there are new ones coming along all the time. My RO told me that the IMRT he gave me didn't exist 5 years before that; in fact, it hadn't even been conceived, as the core technology came out of the entertainment industry.
As the others have said, until very close to the end, this is a crap shoot. My MO said, "I've seen 'em live and I've seen 'em die, and I've learned not to make predictions."
As Tall Allen says, there are amazing results all the time that appear miraculous.
Best of luck to you both.
Sorry to hear about your husband's condition. The aggressiveness of the disease is not just tied to the PSA level. Major factors include the Gleason score, doubling time and staging. Do you know what these are? Has he had a prostatectomy or radiation treatment for his primary tumor?
This information may help you in your search for answers. For me, fear and anxiety are inversely proportional to the amount of information I have. The more informed I am, the less fearful and anxious I am. Being informed and knowing the stats and treatment options is important.
However, don't forget that statistics represent studies from years ago because it takes many years to develop the mortality rates and so on. There are many more treatment options now than were available then. The 30% 5 year survival statistic for stage IVB PCa will likely change to better odds as they are able to gather more current information. If you read some of the posts here, you'll see that many men have beaten those odds by a lot!
I am a big fan of second opinions when you are unsure and things are not looking good. In case you decide to get a second opinion, I would suggest seeking out the closest research/ teaching hospital with a high ranking for their prostate cancer work. You may very well find that your husband's current MO is recommending the right approach or you may find a whole other set of options. Just consider the quality of life versus the benefits in extending his life when making that choice.
I wish you, your husband and family the very best and that you find the path that is right for your husband and for you.
Let us know what's happening and how he is doing. We are always hear.
When you say ”quality of Life”, is that because you dont favor more aggressive treatments? Just curious!
Dmt1121 may reply on this soon. From my experience with "quality of life" considerations vs. treatments, I was once on the verge of entering a Clinical Trial at UCSF of Provenge which was to be immediately followed by Yervoy (Ipilimumab). At the time I had some trouble with Afib with Rapid Ventricular Response which came on suddenly after taking a Provenge infusion #2, weakness from the Provenge, some visual disorientation due to macular degeneration in one eye, a blood clot in one arm due to the Provenge leukapheresis trauma to that vein, etc. I did some more research on Yervoy, which was still in earlier clinical trials at the time, ... and decided I did not want to do it, nor to risk the potential adverse events. I declined the rest of the Clinical Trial due to my subjective "quality of life" considerations.
Yervoy increases antitumor T-cell responses by binding to cytotoxic T-lymphocyte antigen 4 (CTLA-4). In hindsight, it turned out that Dr. Tomasz M. Beer at OHSU (and others) went on to compare Yervoy vs. Placebo in certain advanced prostate cancer patients in an on-going Phase III Clinical Trial involving hundreds of men. It showed no statistically beneficial Overall Survival (OS) differences between the two study arms, but also showed a variety of adverse events/side effects in the Yervoy arm, and 9 (2%) of the men in Yervoy arm died due to adverse events.
In my case, with more advice from the UCSF specialists, I decided to add Xtandi at that time, instead, and it brought my resurgent PSA back down from 95.0 to 1.2, and worked well for 2-3 years, and had side effects for me that were more like an extension of my prior trends on Lupron, rather than something more severe or requiring some sort of "rescue" intervention, which is sometimes the case with Yervoy's adverse events.
No. I have myself have undergone aggressive treatments.
It is about what the short and long term side effects are and whether the time spent not feeling well is worth the potential benefits for extending your life. If I were told I could add three months to my life by spending six months with insomnia, pain, nausea, etc., I would pass on that and enjoy the time I had. I would rather live a shorter life that allows me to enjoy the time I have....depending on the benefits.
It is a personal choice for each person. Hope that makes sense.
It does! Reason I’m asking is because my father’s current doctor doesnt even want to give him ADL (G-9 recurrent, oligo bone mets) and the more I read the more I question this approach and now I’m constantly searching for different point of view before I convince my father to ask for an early aggressive treatment (also: the doctor does not listen to my, so it has to be from my father). Since there is such an abundance of treatment it really feels like the patient has to be his one advocate (or in my case: be my fathers, but he’s happy I help), it’s impressive to see how much all of you have learned about mPC and treatments yourselfs and from each other.
Thanks to all who answered us. We really appreciate all the positive stories!
Below is a link to the yananow.org site where survivors report once a year on how they're doing. The pulldown menu allows you to plug in age, Gleason grade, PSA at dx, treatment chosen, and see a list of men with profiles a little like your husband's, and you can read their stories. (There's also a "Deceased" pulldown so you can see the stories of men who died of PCa and what led up to their deaths, not always PCa) It's all anecdotal information, not data based, but I find their stories interesting and very human. HU is the data based site you'll want to check into.
Some men have great longevity with high Gleason scores and some died within a couple years of dx with the same high Gleason score. That's how variable this disease is. Proportionately there aren't a lot of brand new guys on yananow. So, for example, historically docetaxel (chemo) was given later in the course of treatment than it would be now when someone starts out with mets. Survival has gone up because of that, I do believe.
One thing to note is that your husband has a high Gleason score with a fairly low PSA, which isn't that common. So you won't get many stories of men like that. To see a wider range of Gleason 9s, don't do the PSA pulldown on yananow. My guy is also high Gleason, low PSA though he's not on yananow. I like the site because you get to see what daily lives are like for men with PCa and their partners.
1. Click on Please Enter Here
2. Click on Survivor Stories
3. Click on Contributor Stories and use the pulldowns to choose age Gleason grades, PSA, etc.
After a while you do stop thinking about survival stats . . . sort of. Our current supervising oncologist asked my husband immediately: "Do you have your affairs in order?" Holy moley! Then he said: "One to three years." Yikes. We're in the third year with this onc now, going into the seven-year stretch. Given that, my husband, age 76, took a 30-mile bike ride in the heat yesterday and just finished 10!!!! cycles of chemo five weeks ago and is stable. So take that Famous Oncologist!
Oh, one other thing that affects current survival stats: They're retrospective based on older treatments. My guy had an approximately 5-year expiration date when he started, but that was based on previous treatments without the combos, timing, and drugs that have come online since. His 7th anniversary of dx is Nov, 2020. (I do have to say trouble started in year 5 in his case so the original urologist who threw that number out at the beginning was in the ballpark.) It's a slog but not all the time. We've had fabulous experiences in the last almost seven years, though right now kinda sucks. You're in one of the first innings when just hearing the diagnosis is a blow, then the research, doctor visits, plus Covid--pretty tough. I feel for you both. I wish you both a long, meaningful life ahead. The guys on HU are the greatest--so informed and supportive.
Almost 7 years later. Bicalmaute, zytiga, xtandi, and now taxotere!
6.5 yrs ago..Gleason 9, PSA 10.5 DX..told maybe 3-6 months... Neuroendocrine carcinoma differentiation..the beast of Prostate Cancer Diagnosis... currently in Durable Clinical Remission NED.. unprecedented... Immunotheraphy checkpoint inhibitors Blockade...saving my life when all hope lost... never give up hope, alot of treatment options for us all..not Cure, but certainly to prolong our lives till the next best thing comes along...nobody knows our expiration date, it's up to our Lord...live for each blessed day we are given.
Watch out for Doctors that answer the life expectancy question too quickly. I only asked that question once. I was quickly given a number without him saying anything about how it could be longer with aggressive treatment, what his plan would be to beat that number, etc. I never went back to him again.
Since then I will NEVER ask any Dr that question again. I kiss my wife goodnight every night and every morning that I wake up is a new day for me 😀
I often celebrate that I woke up for the entire day. Especially if there is minimal or no pain, that's automatically a good day.
My experience with my doctor talking about life expectancy was me going through every treatment and what was going to happen after each one stopped working. Then me falling into despair and bawling after I got myself into hospice.
After I left the appointment I remember thinking "Look at what you just did in there! You idiot!" That was a really good lesson for me.
Funny that how long do I have to live is the first thing that comes to most of our minds. For me it lead to depression. Then I woke up one day and from out of the blue I realized its wasnt the length of life that mattered, but the quality that I would live it. So I go about my day finding gratitude in what i see, and especially loving my family. They enjoy watching this old fart get all soapy with tears in his eyes just because i got to see them.
Besides, as nice as it is here I've been told it's way better on the other side. Either way, im good!
Nobody can give accurate estimate of length of survival without extensive details of all features, parameters, manifestations and biomarker levels.
Even after a thorough analysis, exact length can not be provided but most mPCa people are likely to live from 3 years to 15 years. A small number have lived more than 15 years..even up to 27 years.