I am at stage 4. Bone scan found a spot on my pelvis. Lymph glands are affected. Two Dr.'s have been consulted one says you condition is terminal. am currently getting radio active injections. Not sure what to do. Dr. says watch the levels of PSA and if they rise Chemo Therapy will allow you to live another year and half. Unsure what I should do next. Wait and die?
Prostate Cancer stage 4: I am at stage... - Advanced Prostate...
Prostate Cancer stage 4
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Bluemike64
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38 Replies
•
When were you diagnosed? What was your PSA and what treatments have you tried? Many men on this site have encouraging stories of living a long time with stage 4 cancer. Have you met with an oncologist? In my opinion, it is irresponsible for a doctor to give life expectancies at diagnosis of prostate cancer. Everyone responds differently to treatment. Just my opinion.
About 6 moths ago. Yes tired. I don't know the name of the injections. Will stop the production of testosterone. Had my 4th a few days ago. not met with an oncologist. will check into what that means and see if they have one at my hospital
bluemike...you don't know the name of your injection?....you don't know what an oncologist is?.....if you want to live you need to do some research and get up to speed fast...with cancer you are your own best advocate and the outcome is largely based on the decisions you make regarding your treatment
• in reply toBluemike64
yes, I agree with Gus. I am surprised you dont know what you are getting. That is taking things a little to casually.
The radiation injecction is almost certainly radium 223, to go to bone mets and emit alpha radiation to kill cells near where bone is being created (mostly bone cancer mets).
I would be very surprised if you are not getting something for your pituitary - a "depot" (deposit) of an agonist or an anti-agonist - say lupron.
Also surprised that you are not having chemo (docetaxel 6x is the standard of care for high volume prostate cancer metastatic at presentation).
"Your condition is terminal" means that you will die of prostate cancer if you dont die of something else, and possibly in the next five years on average.
They may be correct or may be incorrect.
In either case, I feel that it would help you to manage if you had some more facts.
Hi Mike,
"Terminal"' huh? Too bad. I'm in the same boat, stage 4, node involvement, mets on pelvis and spine. But, "terminal"? Really.
I've promoted this since I've been with the best group of people in the world, you have to change your attitude. Everyone has a terminus, it's just that ours is being helped along. I'm seven years into a 10-15 year sentence. But, what does that mean? I'm on Lupron full time, Zytiga, and getting ready to begin radium-223. And, I feel pretty good. Some issues arose from the radiation, and now I have a catheter for a little while til I get "fixed". But all in all, I'm alive. Of course, I'm limited as to what I can do, but I learned to live with it.
Hang around here awhile, you'll get the idea. Were here for each other.
Peace, Joe
poofers• in reply to
yeah I was dx'd 3 1/2 years ago with stage V with Mets on pelvis and spine PSA 209. The Urologist who is a dick gave me 1 to 2 years. Well, I am going on 3 1/2 years and still on first line hormone therapy Firmagon and Casodex, PSA is still <0.02 and feel great. My Oncologist had given me 6 years initially and after seeing my success with first line treatment but he has now taken the 6 years off the table and told me that the sky is now the limit. Yes, you are scared but you have to fight and with a positive attitude at that. With all of the upcoming treatments don't be surprised if Stage V PC soon becomes another manageable chronic disease...HANG IN THERE
Smack your one doctor; life is terminal.
Never piss of your Healer
You need a new healer.
Find new doctors. My husband's cancer returned in late 2009 with bone mets. Our local docs said he had a 20% chance of being alive in two years. We gave them the finger, did our own research, interviews other oncologists and finally signed on with Dr. Myers. We are one month from seven years since that initial diagnosis and I don't believe his cancer will kill him.
He had to have a hip replaced and his body went septic in rehab. He was taken to the ER, admitted with IV antibiotics and began recovering. Someone left a bed rail down, he rolled off and split his head on the way to the floor. He is now still recovering from the hip replacement and a head injury. Complications from the head may be the worst.
Do not give up on yourself because of some doctor's God complex!!!
• in reply towavedancer
Not to state the obvious, but you probably have a malpractice claim.
DarrylPartner
If you are reading this, then you are still alive check out Advancedprostatecancer.net
Mike,
Don't confuse "terminal" with "terminal soon." I was diagnosed at age 43 over nine years ago, and it's been more than seven years since we first saw bone mets on a scan. I do not have soft tissue involvement (well prostate and seminal vesicles were cancerous and removed). I currently have rib, spine and femur mets. Have you used Xtandi or Zytiga? Have you done Provenge? And yes chemo is an option. You may also qualify for trials.
Don't wait to die. Resolve to live--and to live it up!
Yost.
My problem is Prostate Cancer. They found a "spot" on my pelvic bone. I am mostly concerned with that now. Also my some lymph glands are affected
"Spot" = "metastasis" or "mets." It means the disease has spread and taken root. In your case, in your pelvis and lymph nodes. If your pelvis hurts, you could have it radiated. That worked on one of my ribs. Have you had a CT scan? If it has not spread to other soft tissue (and maybe if it has), you still have options.
• in reply toBluemike64
Now that they have SBRT, they talk of ogliometastasis, or few mets. And many doctors feel that this is a different treatment class.
Well the doctors are right that if you are Stage 4 you will not be cured. HOWEVER, there are a lot of us with prostate cancer that will never be cured. You defiantly need to get a new group of doctors! I have Stage 4 D1 Ductal cancer (Gleason 8, T3N1Mx) that has spread to my lymph nodes. I fought to have surgery, and I am now on hormonal (Lupron) and s. radiation treatments. May have to start chemo soon. Yet I still have hope. (I am only 59.)
Please take a deep breath! We are all here to support each other!
It would be of great help if you can give us some more information so we can help you. You have the right to get copies of your medical records. Could you please include your Gleason score and any other test results? Could you also give more details on exactly what treatments you have had? That way others in this group may be able to give you suggestions for treatments. If you say what area you live in perhaps others can recommend a new set of doctors.
If you need help with the terms, let us know. People here can help you get confutable with the terms.
For example, here is my stats:
58 when diagnosed
4/18/2016 DaVinci surgery
Gleason 8 (4+4) T3aN1Mx ductal Stage 4 D1 prostate 74 g
PSA= 0.1 5/2016, < 0.1 8/16/2016
6/2/2016. Needle biopsy of swollen pelvic lymph node negative
Hormonal 6/2/2016 Lupron (4 month shot)
External radiation: 38 treatments startied 8/15/2016
Leakage 6/28/2016 > 250 g/day, 7/6/2016 < 10g
I can not tell you how to feel. I can tell you it sucked I when I got a call at 10pm telling me that I had advanced cancer. We must both fight!
We all know there are no "cures" for stage 4 prostate cancer. Mine has spread through the pelvis and spine, to lymph glands, especially in the groin, and there are now spots on my liver. However, I am mostly pain free, have a positive outlook (very important), and constantly working with my doctors researching treatment options. I am just starting my first treatment trial, but have participated in other research. Having your DNA sequenced might provide guidance on treatments targeted to your specific cancer. We all respond differently to treatments, so I would echo other recommendations to find a good team of doctors, even if that means some travel. When I am at our home in Charlotte, NC I travel 2 hours for treatment at Duke where they have more experience and do research on prostate cancer. There are many other prostate cancer specialists all over the US and through the the world.
Also, I suggest that once you have a clearer understanding of your precise disease, search clinicaltrials.gov for current research studies.
• in reply toGecrellin
A question on the liver met. I believe that most people feel that visceral mets are worse in some way than bone mets. But I also believe that no one thinks that the liver will fail as an organ due to prostate mets. What is your attitude, if I may ask, or your assessment on the danger of a liver met.
Jackrow• in reply to
I just found I have liver & spleen mets. I’m stage 4 & have had radiation, Radium 223 , chemo (taxotere), Zytiga (didn’t work) and now Xtandi which seemed to slow the progression of bone mets, but cancer found its way to liver. Most on this post suggested, as did my onc to add Carbo platinum even though my low blood counts will require many transfusions- even without carbo, I’ve had many transfusions.
The other option is radioactive beads, Y90 but onc says you need to be off all other treatments which I can ill afford. Best of luck
I agree with others, get a new healer. If you truly believe you are going to die you will, if you truly believe you will live, you will. If you can make survival a strong enough motivation, you will find the answers you seek. Don't put your life in anyone else's hands.
Michael Milken was given 18 months to live, that was 23 years ago, there is always hope.
• in reply topaulofaus
Well, I do agree that a positive attitude is better. It makes the whole thing a little more interesting for one thing. But also, I don't think it is scientific, or helpful, to go all the way to saying that one's attitude determines one's survival.
For example, everyone dies. But we don't say that people could live forever if there were better ads.
paulofaus• in reply to
Yes, we all die eventually, but surviving a life threatening challenge like metastatic cancer (of any type) requires a belief that survival is possible. I recall seeing a study which showed that people who were fatalistic and believed their cancer would lead to their demise, lived far less (on average) to the group who were determined they would beat it.
• in reply topaulofaus
But surely the belief is not the direct cause. Rather it is that those who believe that a medicine might help tend to take the medicine more than those who believe that the medicine will not help. People who believe that laetrile works are not helped by that belief; they are hindered. In that case, people who believe that nothing will help may be better off.
I do agree that it seems to be the case with this disease that those who believe that there is something that will help, seem to find something that does help, and in the meantime we can conjecture that they enjoy life more because of that hope, if we understand human nature correctly.
The objection that I have is that the statement seems to fault the sick person for his belief, which may be a correct belief, rather than saying only that if he is willing to consider the alternative hypothesis, he may find it useful. That there is an option. At some point, after all, he would be correct in saying that there is nothing that can be done.
• in reply topaulofaus
This statement for example "If you can make survival a strong enough motivation, you will find the answers you seek" is one that I feel is headed in the wrong direction.
It even has an echo of the faithful who say if you pray to God with enough trust, He will cure you. Some do say that.
Get a second opinion and go to facility that is doing research so you can get some cutting edge opportunities. Don't throw in the towel.,Push them for better options. Find another Onc. If he's thinking short term he's no use to you. Blessings to you. As long as you are vertical you have opportunity.
I too am stage 4 with lymph node involvement after proton radiation. Fight for yourself. If you don't know what they are using and what your numbers are, you are leaving it up to the doctors. Get educated and be your own advocate. No one (other than Jesus) cares more about you then you. So many people are going far longer than the "experts" say. That Doctor is a jerk And a pompous ass to say that. He ain't God, he's an overpriced mechanic.
I was told I have weeks to live in Mar 2016. This was decided be a group of 3 doctors 2 onc and 1 url. Still alive to their surprise and I let them know every time I see them. My PSa has dropped over 2000 points in that time. With the help of my support group and the Med Onc we came upon a solution that worked. All your attitude is the #med you have you need a support group and a doctor that listens and CARES. I lost my job from all this but found stuff to do to replace it. With restriction and the lack of energy I had to change my whole life. But I beat the doctors because I didn't give up for more then a hour or two at a time. Everyone on this site are with you and have experences with this disease some less some worst. You are way to young to give up.
Chewy, Just going off on a minor tangent. You say you lost your job "from all of this". My understanding is that would be illegal...under most conditions. You might be able to regain job or get some settlement that would help. Just an idea.
herb s
• in reply toherb1
I'll add another tangent. A month after my work as a contractor dried up (I retired from an engineering job a couple of years prior to that) I was diagnosed. What a way to transition into retirement. At 66 I am done working full time anyway.
Because of the type of work I did it is in my best interest to quit I wasn't fired. Boss was sad to see me go sorry for being a little blurry on that subject. Was just trying to make a point not to give up.
Sorry to hear about your status. No, you should not just wait to die. While it sucks, please know that there are a LOT of men here with stage 4. Some of them have been living with it for decades. It is true, at stage 4 you will never be cured, but it could be managed. First, it sounds like you need to get a second opinion. Could you please tell us we're you live so that people could recommend a good hospital. Second, could you please share a bit more on your status? It may help the sight to give you better results. For example, I am Gleason 8 (4+4), Stage 4 D1, Ductal, T3N1Mx. Had DaVinci surgery last April, hormonal started last June and I have had 23 of 38 s. radiation treatments.
The way I look at it...there is not a cure YET for Stage 4 prostate cancer. But there is so much research going on that I believe (hope?) that there will be someday. It's my goal to live another 10 years and hope that by then, they will have made progress toward a cure.
Don't give up. Know that all of us were in the same place mentally as you are now. But definitely do some research, read the stories on this board. Some of them are amazing, and most, if not all, are about living 5 - 10 years or longer after they have received their "terminal" diagnosis. Believe it or not, there will come a time where you will not even think about your cancer at certain times of the day. At the beginning, it's very consuming. But it's not immediate death. And there are others on here who's diagnosis is much worse than yours, who have lived for a long time. No doctor can say for sure.
Good luck, study up. Get treatments, whatever you think will buy you some time. And then, if we get lucky, we may face some new options in the future.
I have been StageIV for over 16 years. FIND BETTER DOCTORS! You need a medical Oncologist at a great hospital like Duke, Cleveland Clinic, Johns-Hopkins and many more. You have a long life ahead of you, so get pro-active and take control of your treatment. Good Luck, we will compare notes in 5 years.
• in reply toJohnstonearch
curious as to what treatments you have had lately, or have you had a long response: some years at zero T? Did you have treatment to the primary?
Focal treatment for bone mets or liver mets?
Well this thread is from some time back. You have been getting "shots" that are radioactive. I take it that this is Radium223. There is no way that your first and only treatment is Radium 223, so I think you are leaving stuff out.
The standard of care for your situation is (per the CHAARTED trial) 6x of dosetaxel and ADT. Then, the next layer of treatment (after PSA progression) can be Provenge or Prostvac (or look for the trials with those). But I personally like the RESTORE study arm c with testosterone. In any case, if you do zero, I feel that you are getting perfectly rotten advice, and if it is from your doctor, its malpractice. But of course you have the choice to move or not move. Up to you.
Get a new Dr???
My urologist told me i didnt need a onc dr. so i saw one anyway. 2 weeks later i was in chemo (6×docet). He said it will give me 12-17 months longer
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