Life expectancy with or without treat... - Advanced Prostate...

Advanced Prostate Cancer
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Life expectancy with or without treatments?

Seabird12
Seabird12

Hi everyone, I have a question that has been very difficult for me to ask since three months ago when my husband was diagnosed with metastatic prostrate cancer. I had zero knowledge about this disease so I assumed the available treatments that were offered to us could cure his cancer unaware of the fact that there is no cure!

I have been constantly on this website reading every comment and every bio, Looking for people who have condition similar to my husband to learn about the treatments they received.

What really made me upset was to see that majority of users are newly diagnosed (2019)and only few with more than 2 years of diagnosis, and so many inactive users that I don’t want to think they all are gone forever.

I’m so sorry if my question is not pleasant, but I really want to know the truth, I think Dr. Scholz sugarcoats the reality , he told us that metastatic cancer patients can live up to 20 years and I believed it at the beginning, but other oncologists that I listened to on YouTube or The statistics say something like 9 to 30 months.

So my question is if stage 4 cancer patients usually leave us in pain and just in few months, why they must go under such harsh treatments ? What is the purpose of the treatments that make patients feeling more sick ?

I even see people saying although they were under treatments with good results the cancer was spreading silently... I really don’t understand the necessity of treatments that cancer wouldn’t care!!!

My husband kidney is showing abnormality after taking Zytiga, so he must switch to something else, thinking that one day he must go under chemotherapy is killing me, he is scheduled for radiation in few weeks and I know it is dangerous too and beside side effects, it can cause a secondary cancer, sorry , I feel so depressed and hopeless, nightmares about the last days of his life don’t leave me alone, I don’t want to see him suffer, I wish I could do something to save him , I pretend to be ok and I made home vey comfortable for him . Fortunately he has no idea of his disease , he believed Dr.Scholz that prostate cancer is not really a cancer and being metastatic is not that bad and he can live long. He is the kindest man I have ever seen , he has been a very good person through his life and loved by everyone who met him , he doesn’t deserve this , no one deserves...

54 Replies
oldestnewest

Hello,

Here is a couple of tips. 1). Never, ever give up hope. 2). Although we are all going through the same storm , we are in different boats. What works for me might not work for you. My boat looks different than your boat! 3). Make sure you have an oncologist who you and your husband trust, takes the time to get to know you and has a good knowledge of current drugs and various treatments. When I was diagnosed with metastatic prostate cancer I had a PSA reading of a little under 1700, a Gleason 8, and bone mets from my knees to my neck. I really thought I had months, not years to live. That was in 2013. Seven years ago. It has been quite the journey. Educate yourself, join a support group and talk to fellow PCa warriors. Maintain a positive attitude and I think your husband will find that makes a world of difference. Hope that helps!

Riderlake2

Ride on brother

Woke up to see your response to a very pessimistic attitude

Thank you so much your text lifted me

My doctor expressed he has seen many live for many many years with Mets stage 4

A positive attitude through it all

Everyday I get up and find ways and means of making that day special

Attitude is the one thing you have control over. Make it a good one!

Me original Dx 2005 IMRT Rad zaps, then 2008-2013 ADHT Lupron/casodex, re-Dx’d Stage 4 Met Sept2019- 9 months Lupron - Abiraterone Prednisone. 2 weeks new CT Scan abs/pelvis/chest and NM bone scan. Still keep exercising fighting kicking and surviving! Never give up hope. 2005 till 2020 till ??? ________? PSA still @1.023. Hope June 8th PSA is same or lower. And Scans show negative. Never give up HOPE.... Doug

Hello, I forgot to add one more thing. You are in good hands with Dr. Scholz. I have attended the last seven Prostate Cancer Research Institute (PCRI) Conferences in Los Angeles. Might not attend this year because of Covid-19. Dr. Scholz and Dr. Myers are the co-chairs. This is an excellent conference if you want to learn about this disease. Dr. Scholz is one of the best in North America because he keeps up with new developments and only deals with prostate cancer. Hope that helps.

Hi Seabird,

You are not alone in feeling that deep worry and fear. That fades once you move forward. I am a wife of a man that has metastatic prostate cancer too. You and are the same🙏 I hope I don’t sound preachy or flip but here are something my guy and I do.

We have worked hard to live in the moment as much as possible: do the doctor visits and medical treatments and care - that is important to keep your guy healthy as possible. Keep the rest of your time for your love for each other. Toast and coffee in the morning together, hold hands and listen to each other. If you can keep your life as normal as possible. My husband wanted to keep working so he changed jobs to reduce his stress. I have a toolbox of things I do to keep positive and hopeful. Meditation ( insight timer a free app) and walking, good friends to lean on which makes it easier to stay positive. Hope is kept alive with reading on what works for other PC guys such as changes to diet exercise and adding supplements or energy work such as acupuncture, I read about one guy in survivorship that said it wasn’t one thing he did but how a thousand points of light coalesced to creates healing. I really loved a book called Radical Hope by Kelly Turner. I used Audible so we both can listen to it together.

Lots of mPC guys will share that they have been at this for many years- I love when they chime in to let people know how well they are doing or not but letting us know that is ok too.

My husband has to believe in the diagnosis but he too believes like your husband in many years left to life. I believe that now too. He is a statistic of one.

Don’t let worry rob your time and energy- find your way to a more peaceful outlook. Be kind to yourself and remember your are not alone.

Love and Light to you and your husband.

For this moment you are safe.

God luck in finding your own toolbox

I hope this helps a little,

Golfnow
Golfnow
in reply to 5to0

Thanks a million for your positive but realistic words. My husband is Stage 4 metastatic Prostrate cancer. We go to all the medical appointments together, golf and hold hands. This devastating diagnosis (2018 September) has changed our lives. Many of these changes have been difficult, bittersweet but now I realize great! We try to be positive each day but we do have our ‘pity party’ moments too.

🙏😷🌈

If you are lucky the medicine will help you

And little side effects. It’s been a year since my husband was diagnosed at that time I felt like I was going to die because he was going to die. Then I came on here and there was a lot of guys that gave me a lot of information and save my sanity. No I don’t know How long he’ll stay OK

But I don’t sit worry about it because he’s here today and if it gets tough will be there together

I can’t save him and it’s not curable but it’s treatable. And remember that this is didn’t happen overnight for me it was a lot of tears and a lot of fear but I’m not gonna let this horrible disease Take away the time that we have. And I don’t know how long we have and you don’t know how long you have with your husband so just enjoy life now

Today ! Is what matters .. For me it’s better to ride with no rear view mirrors or future expectations .

Hi Seabird, yes there are the dark moments you and the others have mentioned. Confront them and talk about them and consult your GP. There are ways to reduce depression and anxiety. However the trick with this disease is to manage it. I am now +18 years from diagnosis and while the treatments have damaged me, I am still fairly functional. I remember over 12 years ago when I went castrate resistant. I was sitting with heavy heart at my favourite restaurant looking out at the magnificent coastal view and thinking "I have only about 5 years to do this (and everything else)." 5 years after I was at the same place thinking "This is not too bad, lets try for another 5". Your husband has a huge advantage: he has got you.

Whimpy-p
Whimpy-p
in reply to kaptank

Inspirational kaptank! Thanks

Beautifully said.

Hi Seabird12,

I started my incurable Stage 4 prostate cancer journey about 6 1/2 years ago with an initial diagnosis of Very metastatic, with 20-25 bone mets all over the place, and a ridiculously high PSA of 5,006. I was in morphine level pain to my lower back, which was how I came to be diagnosed. My initial treatments took away all that pain, and I have been pretty much pain free ever since. If you click my User Name you can read a summary of my history & treatments.

My experience has been that anxious speculation about the details of an imagined future or treatment or end of life tended to cause me undue mental suffering in the here and now. Yes, being on long term ADT and various treatments have had some side effects, but they were often less dire in hindsight than I imagined.

Charles

First you are in great hands. Dr. Scholz has been my oncologist for about 9 years now. About 3 years ago They found three spots on my pelvis and ribs (just like your husband). I hit it hard under Scholz direction and today I’ve been off meds for about 9 months (on a drug vacation) with no mets on my last two Psma imagings. I feel great and I highly Recomend radiation to the three mets if Scholz agrees. No pain and no more mets. Start being more positive. If you do not it will shine thru to your husband and you both won’t be able to enjoy the time you have.

Schwah

Sorry for your situation. I can only talk from personal experience. I was diagnosed in December 2019. I have dual residency with the US and Netherlands. I chose the treatment here for my reasons

When I was diagnosed I was devastated. Fortunately I had three great resources My oldest brother was diagnosed over fifteen years ago and now undergoing chemo. He was a great source as to the actions I should take. My middle brother, also diagnosed, had the cold knife procedure and is “cured”. The third is my best friend. Diagnosed in 2012 and given under three years. He is still here also.

So think positive and keep a positive attitude for the both of you

Best wishes

I too am at about six years original psa 180 Now 7 my local NHS treated me for bladder blockage and a Turps opp and the Mets mainly in my hips are still being treated with lupron and Dexamethesome n9 chemo or radiotherapy to date. For a 73 year old my life is fairly normal albeit the treatment has taken its toll in I lost most my body hair (which I was quite happy with) lost a lot of muscle strength and put on 25 lbs (not so happy with). Ok lost all desire and ability of a sexual nature but that doesn’t bother me or the Wife at all. So I would say go with the treatment and enjoy life

Seabird,

You have heard from many well informed and kind people and in particular PCa wives who are most resilient human beings on the planet. My wife is one from that resilient creed.

Truth is people with metastatic PCa live anywhere from 2 years to 20 years. PCa is a heterogeneous illness and there are many many shades of PCa.

The way to know approx time of life left for a particular PCa man is a complex exercise as you will have to put all good prognostic and bad prognostic signs and then take an algebric sum to come to a reasonable estimate.

Good prognostic factors include

(1) None or minimum other medical conditions such as diabetes, heart disease etc.

(2) Ideal or near ideal body weight (BMI 22 to 24 is most desirable)

(3) Predominantly . plant based, antioxidant/anti inflammatory diet and regular physical exercise.

(4) Only bone mets and no organ (visceral) mets.

(5) Only adenocarcinoma and NOT small cell, ductal or neuro-endocrine subtype.

(6) Super response to lupron type meds with PSA going very very low within a year.

(7) Absence of or minimal amount of pain...less need for pain medicines.

(8) Supportive wife/GF and adequate financiial resources plus good info about PCa.

Note that initial PSA level is not important..its the lowest PSA level (Nadir)after treatment which is crucial.

In fact, some of the most aggressive PCa's have very low initial PSA ( like in 4 to 8 range)

Wish you and your husband health and happiness.

BTW, I consider Dr Mark Sholtz ..one of my top Gurus. He is very very knowledgeable.

Hirsch
Hirsch
in reply to LearnAll

What a splendid assessment of our dreaded disease

Rkoma
Rkoma
in reply to LearnAll

Dr. Myers presentation ustoo.org/VideoFiles/Charle...

confirms what LearnAll said. Nadir around 0,01 and keeping PC hormone sensitive is one of most important targets you should achieve.

Rkoma

LearnAll
LearnAll
in reply to Rkoma

Very succinct and valuable info. Thanks.

Dr Charles Myers is also one of my top Gurus.

I call some doctors sages of PCa world..those include Dr. Mark Sholtz, Dr. Laurence Klotz, Dr. Charles Myers and a few more.

Seabird12
Seabird12
in reply to LearnAll

Hi, my husband’s psa after 3 months of adt+zitiga dropped to .2, what does it mean to you, please ?

LearnAll
LearnAll
in reply to Seabird12

It means "great news !" to me .

Why ? because technically, your husband has achieved what doctors call undetectable PSA" He has plain Adenocarcinoma ( I read biopsy report)

So when a man with Adenocarcinoma reaches PSA 0.2 just with ADT, it means

most of his cancer cells are Androgen sensitive and therefore get killed by ADT.

He still might have a very very small number of Androgen resistant cells hiding somewhere..but not enough to harm him in near future.

To ensure even longer survival, he needs to eat mostly antioxidant, anti inflammatory foods, walk or do regular physical activity and practice deep breathing relaxation.

(cancer cells are afraid of high oxygen environment in body..slows their growth)

Good wishes to you and your H.

Make sure you have genetic testing done. John C White is the resident expert on this and Tall_Allen on everything else. I started at a PSA of 212, Gleason 9 with lymph node Mets up to my neck in 8/2014. Through immunotherapy, and Xtandi and Zytiga I have been NED since September, 2017 via PSMA PET scans. I’m grateful I don’t think I will ever get done with my wife’s honey do list and very grateful I am physically able to do them. Yoga has been my main exercise that has helped with the muscle side effects from Lupron and chemo. Just since I’ve been diagnosed there have been a few new treatments offered to help guys in our situations. Yes it’s scary at times, but having someone like you helping him it increases his chance to live a decent, long life. My onco has the opinion that metastatic prostate cancer is fast becoming a chronic disease. I believe participants in these groups live longer. Keep the faith.

The problem with thinking about "life expectancy" is that it can take you into the realm of statistics and averages, and take you out of the reality that each man is different (even with many shared similarities with others).

The fact is, some metastatic cancers are very aggressive and some are not. Some men suffer terribly with the side effects of certain treatments and some suffer very little. Some cancers bring great physical pain and some you don't even feel at all.

So it is important in the beginning of this journey to accept that uncertainty is a part of it. You can look at all the stats in the world and none will predict exact timing for an individual. Things may start smoothly for some and then quickly get very rough, whereas others may experience great difficulties early on and then see a relatively long and unexpected period of smooth sailing.

Even well into the journey, when the pattern seems more clear, unexpected things can happen. For better or for worse. (I do not speak from experience... yet.)

We all hope our initial treatment will "do the trick" and while some men will ultimately face one failure after another, you never want to PLAN for that outcome. That would be defeatist. But that doesn't mean you can't be PREPARED for it as a possibility.

As a patient or spouse, the best bet is to become as informed as possible about ALL treatments, so you can dictate to the doctor your goals and specific concerns about whatever options he presents.

One thing for sure is that even a little discomfort (physical pain) can turn into huge suffering (mental pain) if it is dwelled upon or worried about. Mental suffering is a huge part of any cancer, for patients and their family members. Oncologists do not deal directly with this, as their specialty is just to "treat cancer."

So you raise a very important point in asking if all these non-curative treatments, with their side effects and failures, are really "worth it." Very few oncologists can answer that question "professionally" because they are directed by the professional directive to try hardest to extend the duration of life (i.e. prevent death) rather than by a more human desire to judge QUALITY of life. After all, how can they decide such a thing for patients, who have their own sets of values and priorities?

But it appears right now that YOU are suffering more from your husband's cancer than HE is! I don't think that's all that uncommon. My wife also worries about me far more than I do. And I ask her: would you rather see me live longer but more miserably, or live not as long but more happily? (She doesn't like that question!)

I will add that my own choice of treating early (and hopefully non-aggressive) metastatic cancer with only bicalutimide and finasteride initially was partly inspired by Dr.Scholz and his videos. I have no doubt that if he was my doctor, he would suggest that is not nearly a strong enough approach (as my actual doctor did!). But my choice is for milder side effects while I still have high QoL, and then more aggressive meds if and when the mets get painful. But that's just me!

To repeat: it's good to be PREPARED for potential bad effects from meds or radiation (or the cancer itself), but don't BET on them. Why not bet on the team you are rooting for? I always bet on the Pats winning, but am also prepared for the occasional loss. My disappointments with them are then always temporary (go, Stidham!).

Magnus1964
Magnus1964
in reply to noahware

That was one of best posts I've ever read. You have a gift.

noahware
noahware
in reply to Magnus1964

Thanks.

5to0
5to0
in reply to noahware

Thank you 🙏. Love reading this.

Seabird,

I would not dwell on longevity. Your husband seems like he is healthy other than the Pca. The liver sensitivity is a problem. However, don't prejudge side effects of other treatments. Everyone responds differently to each treatment. He might do quite well with xofigo or external beam radiation. These treatments sound horrible but most people go through these treatments with little or no side effects.

I can feel your pain. It reminds me of the first few years after I was diagnosed. Every PSA test was another event in anxiety, every CAT scan and bone scan an event in terror.

I don't know his doctor but if others on this forum praise his skill, he must be good.

All my prayers,

Magnus

Hi! My husband was diagnosed in 2016. He had Prostatectomy at that time. His PSA increased and was then started on Lupron. He had radiation. We went to see an oncologist at Thomas Jefferson. He was given medication options. He then started Zytiga. As of today he is on a holiday from his medication. He will be off the meds until a new rise of his PSA. His PSA is currently 0.2. It has been for quite sometime. He is 59 years old. Doctors tell him he has a long life ahead of him. Please see a specialist to help. Don’t plan on death for a very long time. He can have a long life ahead of him. This is a great site for you to be in. The guys here are honest, supportive, and uplifting. I hope to see many more posts from you saying all is well. Prayers and hugs.

Hi Seabird12

I agree with what others have said so will not repeat. My advise is for you to be positive and strong for your husband. I believe how he responds to treatment is is not just about the drugs - it is also mental. Best wishes

Dear Seabird your great love for this great man is so wonderful and obvious.. I was#4 non op. They told me 36 months that was over five years ago . I did alt medicine ( high dose but-c IV’s twice weekly my first year and a half. I went into remission . Thank God. I m still on adt and was taken down hard by it RT and two years with tubes and a foley . Once I escaped that nightmare things improved. Please don’t feed into the death stats . They are never good . The problem in feeding into them is that you just might give into the time allotted. Predictions are Bs. With your love he can do much better . My wife saved me with her love. Or I wouldn’t be here today . When we love and are loved we can endure much to enable more time with the one we love ..Almost everyone on this web cite faces the same truth. Us Guys are tainted and our lives are shortened . Our partners and family must go on . Such a gracious man deserves the love that you’ve given him . This is a great blessing . He has you . Be strong throughout with yourself . You Will carry him when he needs it . This is great love. Do anything each day to take you mind off of APC. It’s info overload with no end.Be well ...🙏 Scott

Seabird. Just from your words I love this man.. I’m sorry for the suffering 🙏

People on this site are not a random sample, and it is wrong to draw conclusions from it. Most people who are doing just fine wouldn't bother coming to a forum.

Your husband's reticence to allow early chemo may be harming him. Chemo, if used early enough, has better results and fewer side effects. It is something you should encourage. Secondary cancers from radiation is the last thing in the world that should be concerning you.

I know Dr Scholz and he isn't lying. But it is impossible to predict how long a given individual will survive.

You are living in an imagined future which is damaging to you - it will only cause anxiety and depression. There are techniques you can learn (like mindfulness) that will keep you more in the present moment and focussed on what you know, rather than what you imagine. I learned it from my psychotherapist.

5to0
5to0
in reply to Tall_Allen

What a thoughtful reply, so true

NWLiving
NWLiving
in reply to Tall_Allen

We will so lucky to have the CHAARTED (sp?) early results come out just a Bill was being diagnosed. He went right on lupron and dosetaxel. Chemo side effects were minimal. We are still here 7 years later. That study showed game changing results - adding a year plus to life expectancies with the use of early chemo. So grateful.

Can you tell me more about mindfulness?

I really need to be proactive I feel like up am not doi g enough to pick myself up

Sure. It is a specific kind of meditative practice where the goal is to make oneself more aware of the thoughts, feelings, and sensations that can eventually come to dominate one's state of being. It seems ironic that focusing on those things allows them to pass on sooner, while avoidance causes them to become predominant. In practice, it is amazingly easy to learn. What takes time and discipline is doing it so much that it becomes habitual. It took me about 3 months of daily practice to get to the point that it is a state of being.

I strongly suggest you practice in a group rather than alone at first. That helps provide the motivation to keep at it, and may prevent you falling asleep (it is very relaxing). Google "mindfulness" and "your city" to find a group near you.

You sound like a woman full of love for your husband. I'm yet another wife of a wonderful husband with metastatic prostate cancer. In our case we decided docetaxel was the best first option, even if not a pleasant one, given his condition. He didn't have nasty side effects (everyone's different).

We also decided against looking at an "expiration date", instead, accepting uncertainty and celebrating each moment. We know a long future is possible even if not assured; everyone is different. I can also testifying to living fully in the moment, to taking the best care of him (and yourself), asking many questions, etc. This board is a wonderful place for that.

And oh yes, Barry and I have fun together, laughter and fun, and that matters too.

The best to you, and I look forward to hearing how it goes for you.

Whimpy-p
Whimpy-p
in reply to Barbara345

Very positive reply Barbara .. Thank you

Every case is different... One man might get a great response to a treatment and the next man may get no response at all..I'm a G-9, diagnosed 11 years ago, I went "Terminal, metastatic advanced cancer" 6 years ago and I'm still here....Yes, I'm running out of options but I'm 79 years and it's been a good life overall and I can still mow my own lawn...Every day you can get out of bed and make and eat breakfast, enjoy that day, it's a gift ! Yesterday is history, forget about it. Tomorrow will take care of itself. Just concentrate on today..

Hello Seabird. Radiation and chemo ain't so tough at least for me, I am G9 for 4 yrs with Mets as of September going on my upcoming 3rd round of chemo, in my mind what i imagined has been worse than the reality. Sure i get sad and feel sorry for myself and worry how my wife will cope being disabled and 100 percent dependent on me, although there will be a way it will all work out, and this too shall pass, words that comfort and get me through the darkness, and love will find a way to lighten the the heaviest burden. Enjoy the present thats all any of us have.

Stage IV cancer covers a lot of patients.

Life span depends on the original Gleason Score, the number of mets and their size, where they are situated, etc and the way the cancer responds to treatment, etc.

I would not give up hope yet.

Hello. Yes the diagnosis is rough. I myself have the cancer.. it was diagnosed as stage 4. I chose to have a robotic surgery. It was promised that I would have normalcy back after surgery and proof cancer be gone. Surgery happened supposedly went great. Then approx 3 weeks after during follow up Dr says but you need radiation and or chemo... so I was really disgusted. I didn't stay in room to listen. I left and my wife listened. I was scheduled for a radiation consult with that Dr. I was pursuaded to do 40 days radiation. I started that in February did 30 days prepandemic and 20 in the midst of pandemic. Supposedly I was going to be all clear after radiation. Not even 3 days later I have follow up with the chemo Dr. She says it is still detectable and I need chemo.

If I hadn't already done the Surgery I wouldn't.

If I hadn't already done the Radiation I wouldn't.

If I could go back I would live the life God gave me. Now I wake up every day wondering how normal it would have been without any of the procedures or time that I have given up.

I'm one of the younger ones and when I ask the Dr. So how long with the treatments I've had? The answer is alarmingly the same as the answer to how long now that I have had the treatments. My problem is I have given up the normalcy parts of life. I'm 52 now and have a 2 year old and 6 year old and 4 grown children of mine and 3 step children 12 to 17... I hope for something to change but I'm not in any better situation now than I was without doing anything. This is my belief. But Dr after Dr make me feel this way. Before the diagnosis I had went 30 years without seeing a Dr for anything.

Good luck on your road..... I hope you and your husband can enjoy a long time together either way.

monte1111
monte1111
in reply to Bab52413

Ouch. I haven't had surgery or radiation. 8 cycles taxotere and then on to xtandi. Extensive bone mets. Hopefully chemo will turn things around. Best of wishes to you.

Wow, stage 4 here August of 16, your question treatment or not. I had a friend that decided not to treat about the same time as I was diagnosed. He lasted about a 18 months😢 . I went for chemo first while I was still strong enough ,then on to Xtandi. My PSA has been stable at 0.05 since. At the start my doctor said I had a 50/50 chance of 5 years. Going on 4 years in August, feeling good, getting muscle mass back. It’s a tough question but I want to spend as much time as possible with my loved ones. As my oncologist said no one wants cancer but there has never been a better time because of all the new treatments. Fight that monster 🙏🙏🙏🙏

Not sure why it seems to you that guys who post were diagnosed in 2019. If you look at my profile you’ll see that I was diagnosed in 2013 with stage 3tb Gleason 9 and in 2017 with stage 4 with a single bone met. I’m still here doing well after multiple treatments over the years and switching to estradiol patches in early 2019.

I think guys more recently diagnosed tend to post more often because they’re looking for treatment information . Guys like me stop posting not because we’re dead but because of the “been there done that “ syndrome ! In other words we focus on other things than PCa if we’re doing ok.

Good luck and live life!

First and foremost make sure you have a great medical team behind you. My Doctor has saved my life or at the very least has extended it. I am stage 4 my skeletal system lights up like a Christmas tree with bone Mets, and several lymph nodes were compromised. I was devastated as are you at the outcome of my tests and treatment options. I put total confidence in my Doctor to lead me in the right direction. I was put Zytiga, Prednisone, Eligard. Six month injection, Xgeva for bone Mets, and later on down the road when my PSA reached 0.1 which by the way is still holding at for almost three years now Provenge immunotherapy infusions. Don't get me wrong it's definitely a lifestyle changer being on all of these medications but the key word is "life "

We all have an expiration date on us regardless of what we are fighting but don't let your milk spoil before it's due date. There are so many options for us Brothers now two more were just approved Lyn the FDA a few weeks ago look into them, trust in your choice of Doctors and. Most of all Never give up never surrender. Leo

When I started this journey 2 years ago wondering with no family history of cancer why me. I had my pity time after getting the news, came home hugged my special black cat buddy and cried. Then I remembered what the urologist had said, it was not good but was not a death sentence. I like you had a foot of research anything from diet to treatment options. When I did see my oncologist he told me the options, lupron and chemo, I just looked at him and said do it. I still worked part time as still doing, chemo for me was not that bad, loss of body hair, some thinning of head hair. The oncogist said he wished all his patients had my attitude, just too stubborn to give up. I felt lucky with only 5 mets and the chemo did its job, the mets healed, short hair is in as is a high forehead. Will be 69 this year and plan on another 20 years, do whatever it takes. Still watching the diet, fruit and vegs important, cut way back on red meat, think I am sprouting feathers and gills from all the poultry and fish I eat. Now cancer has hit the rest of the family left, lost my sister to lung cancer despite not smoking and eating healthy, brother has bladder and colon cancer but still kicking. There is so many treatments now and even more down the road so stay positive and enjoy the present, stop and smell the Rose's. Always have something in the works, stay active, exercise is really important and never, never give up to this ugly beast. Keep on researching and stay on this website, you can learn alot.

Hi Seabird. I know it seems like you are looking at a cliff and it seems like a death sentence with a lot of pain. It is hard to add much to what others here have said. I am not metastic because of a very watchful GP who had me go to a urologist when my PSA was still low in 2018. I thought he was being too careful. It turned out I had Gleason 9 of a possible Gleason 10. It was aggressive and about to spread. I had the robotic surgery in early 2019. I ended up with a side effect almost no one gets as bad as mine. It is hard to live with. I ended up with a recurrence in less than 2 years and am now almost done with radiation. I also had the Lupron shot (ADT). The only real side effect of ADT + radiation worth mentioning is some diarrhea. I say this because I want you to know that the side effects are different for each person. Some people have no problems with the surgery. The ADT plus radiation so far has been a breeze for me. Your husband may not suffer at all with radiation or even chemotherapy. He may be fine with whatever they give him to replace the Zytiga. Over the past 2 years I have been an almost silent observer of several sites and forums including this one related to Pca. There are some knowledgeable people posting here, including some that have lived a long time with this disease. Some do die quickly, but there are more that live a normal life for many years after treatments. Don't give up. You can help your husband almost as much with your obvious love as he will get from the medical treatments. I was lucky enough to have a wife that could have written what you did and she has helped me to have the desire to fight this to win!

Count me as another relatively long term battler agst this disease. Living with Met pc for 8 years now following dx at age 54 and still responding to Lupron along with Zytiga. Had radiation to the largest of several Mets 7 yrs ago after removal of Prostate. Nobody likes the effects of the meds, but I find them much more acceptable than dying. If not for a knee replacement and some complications from it, I would be more active than I presently am. I take a good walk almost every day a and was biking and playing some golf and some light tennis til my knee got somewhat worse. Hand in there and ride the wave,

Smoked most of my life, still like the booze, never overweight until I started cancer treatment, and I love a steak. Extensive bone mets. GS 9, highest PSA 59.9 Given 1 and a half years to 2 and a half years (if I did chemo). About 2 months into chemo was told many years. It's been 3 years and 2 months. The statistics on the internet were grim. (Almost all out of date. A few that were totally misleading.) We are changing the statistics. Just googled 5 year survival; one site says 28% another says 31%. I believe it was about 21% 3 years ago. The 31% is surely out of date now. New therapies coming on line. Probably never be a magic bullet, a mix of drugs like those that helped contain HIV will more likely be the answer. I am just a guy on the internet. But, like many here, I went from despair to acceptance and hope.

What an inspiration- al message..

I am wondering now what I should expect on the results of my upcoming CT and, chest, pelvis! And NM technicium 99 total body bone scan? Doing those June 8th 2 weeks from Monday.

My last Scans & NM bone scans were 12/13/2018.

Should I be worried about what those tests find or what they don’t find??

Doug

Hi. I read this group everyday and comment occasionally. First, everyone’s scope of disease is different; and what works for one may not work for another. You can read my posts under my name Gourd Dancer or even Google Gourd Dancer Metastatic Prostate Cancer.

Second, I am proponent of early chemotherapy while the tumor burden is minimal and the body strong. As such my journey via a trial clinic trial was beyond what is termed standard of care. Rather than finding a medical oncologist from the community, I sought out a specialist in academia.

Third, my treatment has no bearing on your husbands treatment. And, for the most part every one else. I was diagnosed in May, 2004 with Stage 4 Metastatic Prostate Cancer. My Mets were along the spinal column. I am most fortunate in that since February 2010, I have been without any medication.

Fourth, there are knowledgeable people here. They are not experts, but they do have a general idea about various treatment. Some have never been metastatic, yet have a solid understanding. Your expert is the medical oncologist.

Two topics you might discuss with your medical oncologist; micro-metastasis and systemic cancer treatment in the vascular and lymphatic systems. A great question..... Doc if you were in my shoes with metastatic prostate cancer, what would you do?

Stay positive. Treating metastatic prostate cancer has come a long way since 2004. Most of the drugs used today were not even in trial...... solid developments to treat. Many different silver bullets in the arsenal....

Keep kicking the bastard.

Gourd Dancer

When you husband drives his car....do you always anticipate him being in a terible accident that kills him? And if he drives everyday thinking that way will drive you crazy... So I am quoting you now "I feel so depressed and hopeless, nightmares about the last days of his life don’t leave me alone". Those thoughts will also drive you crazy. Pca is a slow growing disease and with so many meds around you dear husband will be around for a very very long time.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/24/2020 11:30 PM DST

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