You have been treated for prostate cancer and you find out that your PSA is rising. You are diagnosed with prostate cancer and the doctors tell you that the cancer has escaped the gland and moved on to other places in your body. You have advanced prostate cancer and there is no cure for you!
When we are faced with advanced prostate cancer most of us do ask the famous question, how long will I have to live? When I asked that question my doctors initially responded that they had no idea. When I pushed further for a more satisfying answer I did get some additional feedback. One of my doctors said something like “you will be a patient of mine in five years, but in ten I can not say for sure.”
Well, here it is closing in on four years and I am happy to report that I feel fine and my PSA is still under control. I am very sure that I will pass that five-year mark and yes, as he predicted, I am still a patient of his. I do remain hopeful about making that 10-year mark, I guess only time will tell.
Why is this universal question, how long do I have left, such an important question? For me, it was and is important because it helps me to think about my tomorrows. It allows me to think about and plan some of aspects of my tomorrows. More importantly, it helps me to plan and appreciate the much more important today’s.
Doctors hate the question because they don’t have a crystal ball, each of us will experience our disease progression differently. Some of us, even with the same disease patterns, will outlive the other. Many of us will not die from prostate cancer, but will die from some other disease or from some accident.
We do not really know what the future holds or doesn’t hold for us. That is the very nature of life and death, but for me knowing that I have cancer allows me to also know that I do have today.
Joel T Nowak MA, MSW
i am 18 years old and my dad has advanced prostate cancer. it has been just over 1 year since ha was diagnosed. life at home is really hard as the family gets upset quite alot. after reading this i feel a part of me has been put at ease. i thought i would loose my dad straight away. i dont really understand how cancer works. i suppose i am too scared to find out. i would just like to say thank you for writing this it is an inspiration.
My grandfather was diagnosed with prostate cancer that spread and I’m afraid to ask how long he will live. He has lost tons of weight and has no appetite. He isnt even old! Thank you for this confirmation that I will possibly have him around another 5 years atleast!
It’s almost 2 years since you posted this.
I wonder if you’re still alive.
I hope you are and not in too much pain.
Please let us know.
I am alive and very happy, thanks for asking. – Joel
Joel – That is a joy to hear, I am happy for you and hope each day is filled with Love Peace and Happiness always… fight the good fight 😉
My husband was given the awful news that his prostate cancer had spread. We are in turmoil but reading your comments you have given me hope.
Just wondering if you could give specifics about your disease? Is your cancer in the bones? My Dad has prostate cancer and fears he won’t be around for very long. To look at him you wouldn’t know he has cancer. Just wondering how his case compares to yours?
You can read a complete history under the heading “About” on the top of the first page. Tell your Dad that there are many of us long term survivors.
I’m so pleased to see that your still around Joel and i dont even know you! you have created a very comforting resource 🙂 Im a 21 year old student, my father was diagnoised with advanced prostate cancer last december, and it was a nurse who told him, and did not explain very well what this diagnosis ‘meant’. My father came away thinking he would be lucky to see next christmas, but after doing research and reading stories such as yours my family and i realised that it isn’t at all as iminant as the nurse initially made out.
We are still having a hard time convincing him that he’s likely to have years left rather than months. As a result of the stressful news he had a few ‘episodes’ that the doctors thought were strokes due to a complication with the hormone treatment (turns out it wasnt but a very rare thing that doesn’t even have a name….where plasma leaks in to the brain and causes stroke-like symptoms) but anyway these ‘episodes’ have left him unable to use his left side properly, he’s extremely tired and is finding it hard to come to terms with how exhausted he feels. He seems to have given up with the physio to help him get the use of his left hand again….
Sorry for going on, i suppose i was just wondering if you had any advice? I’m not sure how to help and encourage him, he runs his own buisness you see and he is now unable to return to work and with the recession we are in a huge financial pickle to put it lightly. So its quite difficult to reassure him, because even i cant see how any of this is going to be OK
I wish there was a way to seperate him from his financial worries! then atleast he would only have the cancer to worry about! but anyway i’ve almost told you my life story here 🙂 do you have any pearls of wisdom or encouragement that may help a fellow sufferer?
If possible, try and get your father to start meeting other men with prostate cancer, especially with advanced prostate cancer. He can learn from others experience and survival stories. Talking to men like me he would see that I am still alive and functioning after a diagnosis 11 years ago and a metastatic recurrence 5 years ago. – Joel
First, your father is lucky to have such a loving and concerned daughter. My best suggestion would be to get him out to meet other men with prostate cancer. Seeing that so many of us do still have a happy and healthy life ahead miht help him view his situation with a clearer lens. – Joel
My father has just been diagnosed with advanced prostate cancer and has started hormonal therapy today. We (dad, mum and I) were frustrated that they don’t tell you what to expect. So like most people here I have been searching online to find more information and found your site. Thanks for the information it is fantastic. – Marcie
I might suggest that you and your Dad join the Malecare Advanced Prostate Cancer On-line support group. We have over 750 “experts” sharing ideas, experiences and advise. Go to Yahoo, Groups and search for the Advanced Prostate Cancer Group. Click – Join this group. – Joel
My name is George, I have been recently diagnosed with advanced prostate cancer Gleason 9.
I need to start communicating with you and others who have the same problm.
need your help pls
George, I suggest that you join the Malecare on-line advanced prostate cancer support line. With your permission I will register you to participate. Let me know. Also, where do you live?
I am a 10 year survivor of advanced prostate cancer with bone metastatic disease, I continue to respond well to IHT, vegan diet and vigorous exercise program. I appreciate every day of health and look forward with optimism although I am realistic.
I was diagnosed with Advanced Prostate Cancer in October 2005,I was completely unaware that there was anything wrong. I had visited my doctor for another unrelated reason, but he insisted on giving me a prostate check. He sent me to a specialist who confirmed his diagnoses.He prescribed hormone injections which I have every 12 weeks. At the time I said that I would be quite happy to reach the age of 80, I achieved that on October 1st 2011, I feel so extremely fit and active that I have given myself a new target of 85, and feel confident that I shall attain this goal. I know that a lot of this is due to an optimistic outlook, keeping fit, a lot of support from my family and friends, never looking backwards only forwards, and the wonderful support from my wife and daughter(who both refuse to let me get old. They got me to take up golf at the age of 76, archery the following year, and as I live on the south coast of England, have taken me Power Boating. I live in fear of the next project they have in mind for me Sky diving or perhaps bungee jumping ( I have a fear of heights!) I am also friends with two Chinese Doctors who have introduced me to the benefits of a healthy Chinese diet. In fact I think that I may well revise my target and say that I expect to see 90! I do hope that anyone who has been diagnosed with Advanced Prostate Cancer will read this and take heart that it can be conquered with a positive forward looking outlook. The ancient Chinese Dao masters believed that the human lifespan is at least 100!
Congratulations on reaching the age of 80 and yes, now on to 90 and beyond.
Hello Joel it’s very nice to read all this my father has been diagonised with prostate cancer in 2006 then he had turp and he was on hormone therapy then cancer become refractory and came back….last year he had turp again but prostate grown so quickly…..now in December 2011 he has been diagonised with advanced prostate cancer and even in bones…..he has lost so much weight…..I m really concerned……please advise…thanks
My husband is approaching his 12 year anniversary of being diagnosed with aggressive prostate cancer (Gleason 9).
Until recently, he was able to live a fairly normal life, with numerous bumps in the road.
I will tell you- the longer you live, and the more treatments you do, the more likely your chances of having side effects from the treatments that can alter your life considerably.
My husband is now bedridden with a severely broken hip and a fractured tibia. He has recently been enrolled in hospice care at home. His cancer has reached Stage IV with advanced metastasis in the bones and he is Hormone Refractory.
I have no real idea what to expect at this point. He needs so much care- is unable to even use the toilet outside the bed, and has become so thin and weakened he is barely able to re-position his body in the bed. It is very overwhelming.
However, his appetite is good, his spirits seem up, and in spite of his physical inabilities, still wanted to take Zytiga. A few times I have thought he was right on the brink, and then he seems to rally again.
Does anyone have any idea what kind of timeframe we might be looking at, with these kinds of complications and advancement?!
That may sound morbid… but as his wife, at what seems to be the tail end of a very long and exhausting rollercoaster of a ride, I like to know what I am in for to be prepared. Over 2 years ago he was told “a year or less”.
p.s. diagnosed at 50- now 61.
your stories are very very reassuring.my husband has recently been diagnosed with a gleason 9 but apparently no spread at the age of 58 he looks so well its so hard to beleive this awful disease
Moria- I hope that your husband continues for many decades looking and more importantly feeling happy and healthy. Don’t forget, despite his current condition he must work everyday to stay on top of his disease. This includes diet, exercise and with a gleason 9 an active and aggressive treatment course.
We are now undergoing radiotherapy 39cycles but he has a cough and sore throat for past 6 weeks chest X-ray negative but worried something else going on I am amedic but don’t understand this disease to close to home Joel please help me
I am so glad I found this site. I was diagnosed 8/11 with Pca with a PSA of 8.4 and Gleason 7. I elected to have brachytherapy (seed implants) 12/11. Beginning 2/12 I started feeling some pain in my right shoulder but just chalked it up to aging. I am currently 56 and a white male. My PSA 6/12 jumped to 5.2 and then to 6.4 9/12. Also, for no apparent reason my right shoulder broke 8/12. I had a bone scan and break showed as a hot spot so masked possible cancer spread. Visted Mayo Clinic 10/12 and discovered cancer had metastized to pelvic lymph node. Had a PET scan 12/12 and discovered cancer had also spread to bone in right shoulder. Doctor tells me the disease in not curable and wants me to start Lupron (hormone) treatments and radiation for my should to lessen the pain.
I’m having a hard time deciding to take the Lupron or not as the side effects don’t look very good. Quality of life is very important to me and I would happily give up longevity for quality. Doctors will only say I could live years with treatment. Nothing definitive just years. Everything I’ve read says 3-5 years. Does this sound about right? Any advice from the group would be helpful. I’m really torn whether to do the treatments and hope for more years or just roll the dice and let the chips fall where they may.
I am an advanced prostate cancer patient-gone on to bones and lymph nodes-taken Provenge and now on Zytiga-a chemo in pill form. My prostate was removed 12 yrs ago-my PSA went from 0-to 49-to 149-to 206.8 to 282.6 and now down to 282.6.
What has worked well on this situation with yall? Please respond…walt
My dad has prostate cancer and is in stage two.
my dad was diagnosed with advanced prostate in april 2010, just 4 months after i lost my mum. He had hormone injections and tablets to start with then in march of 2012 he underwent 6 months of chemotherapy, When he went for a follow up appointment in november his psa reading was about the same as it has been when he finished chemo 2months earlier, All seemed to be going well with no severe side effects from the chemo. Apart from lethargy. But these last 3weeks he has complained of sore neck and hips and has gone off foods that he has eaten for years, He has no motivation and sometimes feels cold even when it is warm. Can anyone tell me if this is longterm effects of chemo, old age or my worst fear of something more sinister
My husband has been diagnosed with stage 4 prostate cancer. A high psa of 63.6 and a Gleason score of 4+ 5 = 9. The cancer has spread to his ribs and bones. He is 50 years old. We have two sons, 18 & 13. He will find out on Friday, Feb 1st if his psa has dropped from the lupron shot and hormones. They may do surgery on prostate. He is very scared, and worried that he won’t be able to see his kids get married., etc. does anyone have any idea how long he will live, beings he has stage 4 and a Gleason score of 9?
Della – I can’t possible answer your question, I am sorry. If he has not reported these pains he should let his doctor know about them immediately as they might be a result of the prostate cancer progressing. Joel
Betty – Nobody can tell how long any of us have to live and anyone making any sor of suggestion is simply making things up. I do have to tell you that your husband’s disease is serious and aggressive. Make sure that he is being seen by a top notch, cutting edge prostate cancer oncologist. His fear (and I assume your fear) is well founded. I suggest that both of you also see a mental health provider who might be able to help you both deal with your concerns. Joel
My dad has been diagonsed with adavanced prostate cancer. We are currently on a PSA watch – I consider myself to be a rational person who is sceptical when it comes to dietary fads, however, I would just like to mention that the Indian spice Turmeric has been scientifically proven to reduce cancer tumours.
This prostate journey of ours started in December. My dad aged 73 started experiencing pain and discomfort. His PSA was on the rise but nothing too hectic. He had a biopsy and results came back as cancer. The prostate capsule raptured so the prostate is still protruding from the capsule. PSA has steadily increased from 8 in November to now in March a 60. Beginning of February his reading was 43 so clearly on the increase. He has been on Avodart HRT since January and clearly has done nothing. We had scans done and have now found since January it has spread to his spine, liver, lungs and lymph nodes. We saw oncologist yesterday who informed us he is stage 4 and terminal. Life expectancy was not given as our doctor is not God with all due respect and when my mom asked the question I replied with “how long is a piece of string”. He started hormone injection yesterday in his tummy and a drip a drug called Zorem I think to strengthen his bones. Hearing the word terminal is very scary but he is comfortable and pain free at the moment due to Oxicontin that he is on. We live each day, embrace each day, live life and love life. We don’t know when his last day will be and I can’t bare to think about it. He is my dad and we are very close. I just want him comfortable , having some quality of life and loads of love and laughter around him. He may have 6 months, reading some of your posts he could have 10 years. Each day is a blessing. God bless you all as we walk this road together – Shirley
Shirley- Your attitude and your outlook is 100% correct. You may be surprised as his cancer might be very responsive to the hormone treatments he is receiving,only some time will tell. Good luck to you and your mother. – Joel
my dad has a very high PSA and the doctor said he can possibly have cancer. my dad is so silent and secretive ever since. i just want an advise from you on how to comfort my dad. i don’t wana see him so depressed. i’m also scared to confront him on how he feels coz u know men, they don’t wana show it. I just want to know if he’s okay and wants to be there for him. he’s the kind of guy who doesn’t want to feel self pity. what will i do?
Say exactly what you just told me. Acknowledge to him that you understand how he feels about being private, but you want him to know that you love him and want to be there for him. It also sounds as if your dad needs more information about what might be causing his high PSA and if it is cancer he needs to learn about the disease as it can be managed (I was diagnosed over 12 years ago). – Joel
I have a close family member who has refused to go to the dr for last 15 yrs but has strongly suspected that he has prostate cancer. He states he will probably die of something else before that kills him. However, the last 8 months he has been experiencing severe pain in his lower back and hips although he stills makes himself go to work but it is starting to interfere with his side jobs which require manual labor. He is 60. Just generalizing … And making an assumption that it has moved to his bones … what are we now looking at happening with no treatments?
Stephanie – Even with the cancer moving to the bones (if he has prostate cancer) there remains many treatments available to him which can slow down the disease and relieve the pain he is experiences. Get him to a doctor. – Joel
Thank you so much. I love my dad with all my heart. Tomorrow is his second bone scan. I am feeling so positive after reading all of the posts. Thank u xxx
Does frequent and constant pelvic pain and pressure and also groin discomfort and pressure and hip pain mostly just the right hip and right leg numbess and lower back pain with slow and weak urine stream and dribbling daily means that the person has advanced prostate cancer or prostate cancer.I’ve been having these symptoms for three weeks now and there not getting any better.A week before these symptoms started I had been to the hospital emergency room for having chest pain and breathing problems.The emergency doctor said that I had a upper respitory infection.And he gave me antibiotics and pain medicine.I ‘ve had microscopic hematuria for seven years and I still have it today but now with the symptoms that i’m mentioning now.I used to sit in a hard chair everyday for 22 hours daily at my computer desk and I also before I started having these pain symptoms I got hit in my front pelvic area accidently and it hurt for while.And I sleep on a wire spring mattress that seems to hurt me on the sides that I lay on daily.My hip pain is also in my right buttock and inner and outer thigh and right leg and now there is numbness in my right leg where the hip pain and buttock pain.Could some of these syptoms have been caused by me being hit in my pelvic area and or from me sitting on a hard chair for about 22 hours a day at my computer desk and sleeping on a wire mattress bed daily.Or could this be advanced prostate cancer , prostate cancer or prostatitis.Did you have any of these symptoms at first before being diagnosed.And if you did have any of these symptoms.Can you describe to your exact hip pain if you had hip pain.Like what would the hip pain feel like in advanced prostate cancer,can you describe it to me ,please.Because the hip pain that I am experiencing is like intermittent dull and numbness achiness that seems to not go away.It’s just my right hip and buttock sometimes,lower back pelvic front ,groin and inner and outer thighs and leg numbness now with kind of like little burning.Could you explain to me what and how advanced prostate cancer is will the pain be all over if if a person has advanced prostate cancer or will it just be in the right hip and leg. Thanks Tracy Collins
What you describe could be any number of things including prostate cancer. The only way to definitively diagnosis any type of cancer including prostate cancer is through a biopsy. What you describe might also be something unrelated. I do think that it is important for you to go to your doctor immediately for an examination which should include a PSA, digital rectum exam, a cardiogram as well as general blood and urine analysis. – Joel
My best friend Gerry. Who is 41 just started his treatments today for his stage 4 prostate cancer. It has spread to his pelvic bone. He is getting hormone therapy and chemo. Is there anything else out there that he should or could be doing? He is in great shape and exercises every day. Can you give some idea of what the near and far future holds for him and how and what I can do to help. Thanks
Depending upon where he s living there are a number of posible options for your friend. However, I would not recommend that he start chemotherapy at this point. Most men will have an excellent initial response with hormone therapy alone. Only after the cancer stops responding to the hormone therapy should be consider adding additional treatments. There has been research looking at the early use of chemotherapy, it does nt shown an survival advantage, but will decrease his quality of life. – Joel
Thanks for responding. Gerry lives in the suburbs outside Philadelphia. He did get three opinions from doctors in the philadelphia area and they all had the same approach. Chemo and hormone therapy. I will let him know about your response so that he can discuss it with his doctors if he chooses to. Is there any other treatments that he may want to look into? Thanks
At this juncture no. There are other treatments that will be effective once his cancer stops responding to hormone therapy and that can be taken prior to chemotherapy. Zytiga is probably the next step at this time. – Joel