Advance prostate cancer.

I have just been diagnosed with advanced metastatic prostate cancer, Gleason 9. I have no pain and feel great physically but mentally shattered. I always went for regular PSA checks so when my PSA levels rose from 4 to 18.4 within a 12 month period I was shocked. I am 61 and apart from this setback I am pretty fit.

I am now starting on hormone therapy and chemotherapy with Docetaxel for 6 cycles.

Does anybody have any idea of what I'm in for?

25 Replies

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  • Hi there David. I am sure you will get other answers, and probably questions too. I just happened to 'stop by' the website today and saw your post, and I feel inspired to respond briefly. I am 47. I was diagnosed 4 years ago with Gleason 8. First I went through radiation therapy. A year later, I found out the cancer had metastasized - most likely before the radiation, at a microscopic level which was not visible on scans.

    Anyway, after exploring some complimentary approaches to see if I could influence my PSA trajectory, I went on Lupron along with a course of Docetaxel like you. That was about two years ago.

    It is really strange to be living with cancer when cancer is only a idea that doctors tell me about, but which I do not experience. For the most part, I have had no physical symptoms from the cancer itself, only side effects from the treatments. (I did have some bone pain for a little while before going on Lupron due to a metastasis in my ischium.)

    The side effects from the Lupron are a bummer... particularly the loss of libido and sexual function. However, I am still able to have erections sometimes even without meds. One thing I wish someone had told me was to experiment more with sexual stimulation and erections. My loss of libido caused me to neglect my penis for long periods of time, and I am convinced that resulted in it shrinking and changing shape some. I wish I had used a penis pump and mastrubated more. Not sure if this will be helpful to you, but it is just one thing I wish I had known more about.

    Right now I am still feeling good. I live a good life - physically. My PSA was up in the low 20s before Lupron w/chemo, and it has been undetectable for over 1 1/2 years now. Of course it may start climbing again any day now, based on the estimates I have gathered from studies.

    It's been the most incredible journey for me. It may seem unbelievable, but I can honestly say that I would not give back all that I have gained in my personal relationships and personal growth since my diagnosis. Although, for at least the first couple of years I resisted my new reality with great stubborness. I have been mentally shattered, and that does not completely go away. I have also been emotionally crushed, and I still live with that experience in various forms as well. For me, this path of resistance and acceptance has cracked me open in ways I could not have imagined.

    I have also been incalculably supported by my meditation practice. In the worst of times, it allows me to step back and appreciate the human journey that I am on. It also helps me to have the space to remain connected to a deep sense of gratitude for all of the blessings I have recieved in this life, and that I continue to recieve on a daily basis. To die, to be sick, is not taking me anywhere that I did not already know that I was going. The timeframe does not match my previously held expectations; but those were just ideas. I've learned a lot by reading about people who have made the journey before me... not the journey of prostate cancer, but the journey of life that does not necessarily go the way it was planned.

    Amor fati.

    For both of us I hope for a long life! And I wish you the best in your journey. I don't know if these words give you any of what you were searching for from your post here. I hope they help in some way. It helped me to write them... so there's that :) Peace, brother.

  • Thanks Tak

    That was really helpful and encouraging. Interestingly my MRI scan showed that the cancer had not spread but the bone cancer showed a small mark which did not seem to be that significant. However, I then saw a consultant privately who suggested I had a PET scan to be absolutely positive before I begin any treatment/ surgery.

    The scan revealed that it had spread to the pelvic lymph nodes and a small microscopic amount to the pelvis bone and T11 vertebra.

    I am now on a defined pathway of hormone therapy which started last Monday and 6 cycles of Docetaxel chemotherapy in November. I have been told that running the two together significantly improves survival and overall quality of life, emotional wellbeing and prostate cancer related concerns.

    I intend to keep as fit as I possibly can, control my diet and I keep my fingers crossed that these treatments work. I am also taking black seed oil and homemade tomato juice which helps boost the immune system.

    I will keep you posted.

    David

  • Beautiful Amor fati ♡

    Thank you.

  • Tak, beautifully written. I too have come to terms with my "shatteredness" and now find the gold in the diagnosis. I no longer say I have cancer rather I say that cancer has chosen my body in which to inhabit. Cancer is in me but its not mine. That helps.

    I too have found the changes in my attitude toward others and my spirit for living have benefited. My realization of my blessings, my basic kindness and a zest for new experiences have enriched my life. Your statement " The timeframe does not match my previously held expectations; but those were just ideas" is perfect for me.

    We all die, and my previously held idea about my length of time here on this earth has been altered to some degree. The benefit to me of this knowledge is that I now am living a full and enriched life full of freedom and new experiences rather than living just an average life with the thought that some day I'll do it, which was how I previously lived and thought.

    Now is the time. The present is the thing. Tomorrow isn't as important. I actually now think about the value of my time and say no to things I may have previously said yes to. I am important now and what I want is what matters.

    David I was scared at your point on the path. Know that you have time. Doctors saying I have it without any experience of it is definitely hard to grasp at first. Some unkown reading in my blood tells me its there. But without symptoms I am not really connected to it.

    Tak is right once you're over the initial scare you'll adjust and chart your course to a long and happy life. Sorry you are here with us.

  • I started out with the same treatment of lupron, casodex and 6 rounds of Docetaxel. At the time my psa was 850, yes 850 with 3 mets on bones and enlarged lymph nodes most everywhere. I went 100% vegan, no sugar and numerous supplements. The Docetaxel took my white blood count so low that they put me on Neulasta which boosted my wbc. I continued to run 3-5 miles 3,4 times a week and lift the other 3. Fast forward nearly 2 years, my psa is currently 0.07 and has been for six months.

    You are just getting started and have a long, long way to go. In case you haven't been informed, the lupron/docetaxel "right off the bat" is a result of the CHAARTED trial. (Google it).

    The Lupron has caused me to lose 25% of my upper body strength, lifting weights help combat the Lupron effects. It took me nearly 1 year to stop the constant thought of having stage 4 cancer. Now I just go about my daily life as nothing is wrong. Many men in our condition live for 10 years or more. Relax, you're not going to sign out in a year. One thing to remember is that you now have a different life, adapt and enjoy the many years you have left.

    Eat right, exercise every day, even if it's just a half hour walk, and don't read the 100, 000 life expectancy charts like I did. You may not ever be cured but you can and will be successfully treated for many years. now quit worrying and plan your 2017 vacation.

  • Down to earth excellent advice! Very encouraging!

    Reminds me "What is in a name, which we call a 'Rose' by any other name would smell as sweet.

    Thanks for whoever.

    Sisira ( real name )

  • David ,

    I was diagnosed stage 4 in 2006 at a time when we did not know about the advantage of early chemo, Some Doctors seemed to know, Strum in particular. Yes I was dxed with high grade metastatic PC in June of 2006, I have been on various forms of hormonal therapy ever since. Attitude makes a difference , and do not believe any Dr that tries to tell you how long you have, You are on the right track medically. Soon I will be initating taxotere unless it is found in a recent surgery for biopsy that my cancer has mutated, then it might be olaparib. When I was diagnosed my first psa was 148 and Biopsy read gleason 10 with widespread metastatic disease to bone and lymph nodes at 49 years, I went on with my chosen Occupation for 10 years , then I retired. I feel good though reeling a bit from the recent surgery to obtain a biopsy of one of my tumors in the abdomen, no pain living my life with Family, trying to help others wherever I can, I plan to buy a season pass at my local ski hill and take advantage of the discount offered to those of us 60 and above.

  • Hi David I was diagnosed 11 years ago with metastatic PC -PSA 24 and Gleeson 4+4 -age 62 and survived 9years on hormone therapy and now 2 years on docetaxel PSA now 22 -still active and playing golf and doing some part time work -the secret is to keep fit and active -meditation is important and have tried many natural therapies over the years-good luck

  • Hi David, sorry for becoming part of our club. I understand your feelings, I had just turned 49 (in April 2016) when I got my diagnosis, Gleason 10, mets in 12 places in my bones. I feel great, but the mental side effects can be the toughest. I do my best to remain optimistic and I am determined to beat this condition. I've had cryoablation on my prostate and fingers crossed I'll get a good outcome (I only had it a few weeks ago after several months on Zolodex). Anyway, I agree with most of Tak-Druk's sentiments. The shock will wear off, then it will be time to find your own path. Best of luck.

  • David,

    I agree with Tak. I was stage 4, Gleason 8. Took chemo as my first treatment after Lupron I 2011. My thinking was after each chemo treatment I needed to go slow running to circulate the chemo throughout my body to go after all the cancer it could find. I did this because one of my oncologist said the cancer got to my pelvis by my blood system. Still happy to say my PSA is undetectable. Hoping for the best for all of us.

    Wilfred

  • Hi@DavidT-55,

    You are in for the same battle that most of us are fighting to survive!

    First important thing that you should be relieved to understand is that you are not alone.

    You have a good start when you say that you feel great physically. Try to match your mental attitude as well with your physical stance. This is not something strange which has happened only to you. This occurrence has a very high probability in Western countries that surveys have found 1 in every 6 men is bound to suffer from prostate cancer no matter who is X,Y or Z.

    Gleason 6 is low grade which is less aggressive, 7 is medium, 8.9,10 are high grade and most aggressive. You have mentioned that you always went for regular PSA tests and within a 12 month period it has gone up from 4.0 to 18.4. What is important here is even within the normal range from 0.0 to 4.0 the velocity of the PSA could have been high indicating aggressive prostate cancer. Such cases could be clinically identified by the urologists with close examinations, colour dopler MRI, biopsies etc. before the cancer goes out of the prostate capsule and become metastatic. But now there is no sense worrying about, for not having gone to a good urologist at a much early stage with your regular PSA checking.

    It will be useful for the friends in this community including myself to know the following to make any meaningful comments on your case.

    - When were you diagnosed for PCa?

    - What are the other pathological conditions identified in addition to Gleason 9?

    - What are the important tests/scans you have used in diagnosis?

    - Do any of such tests indicate that metastases are found in the bone, lymph nodes or any other parts of your body?

    - For how long you will be placed on ADT ( Androgen Deprivation Therapy/Hormone Therapy) ?

    - Are you being treated by a good Urologist and a medical Oncologist whom you can trust?

    Apparently, you have been given the right treatment to begin with, for advanced metastatic prostate cancer. ADT is considered as a palliative treatment whereas Docetaxel ( chemo ) is curative and both are systemic ( whole body ). Both these treatments are very aggressive with severe side effects but all can be tolerated and manged well with positive and proactive planning and attitudes.

    Maintain your great physical strength further with adjusted proper diet and regular exercise. Do the necessary blood work/scans etc. to ensure all other important metabolic functions in good order since these aggressive treatments can affect them adversely ( bone health, cardio vascular, liver, renal functions, blood sugar, blood counts and body weight most importantly ).

    More than anything else, strengthen your mind and be resolutely determined to hit the enemy within you as hard as possible. There is a long way to go and we are not going to leave you alone.

    As much as good treatment, you need lot of research and reading on the subject of PCa for "knowledge is power" at all times. I would like to recommend to you the following priceless book written by a world renowned Urologist who is a legend - Dr.Patrick C.Walsh. You can order it from Amazan.com

    "A Guide to Surviving Prostate Cancer" 590 pages $ 14.35

    Another useful book by Oncologist Dr.Charles Myers

    "Beating Prostate Cancer : Hormonal Therapy & Diet" 208 pages $42.99

    By the way, what is your nationality and where do you live?

    I am from Sri Lanka ( A small Asian country )

    I wish you all the courage and success in managing your disease for long survival with peace and happiness!

    Sisira - A Gleason 9 worrier.

  • Do you live in Sri Lanka now, or did you at diagnosis? Actually I am curious as to where each poster lives. (I am in NY State.) I'm surprised also that Snuffy is known in Sri Lanka. Is he?

  • Hi Martin,

    I have been living in Sri Lanka since my birth and gone out from time to time to several other countries only for short spells during my professional banking career. So I was diagnosed in Sri Lanka and still living in Sri Lanka.

    I was in the habit of checking my PSA along with the other routine tests. I knew when my PSA was rising, it could be due to one of the three issues viz. BPH, Protatitis or Prostate Cancer. To tell you frankly my family doctor who is well qualified did not know sufficiently about the significance of PSA testing and all he knew was up to 4.0ng/ml and around, there is nothing to worry. I was asymptomatic but I went to a Urologist on my own when my PSA reached 7.5ng/ml. He ordered a 12-core needle biopsy and gave me the verdict that I have PCa of Gleson 4 + 5 = 9. I was not shocked since I anticipated any one of the above could be the reason for the high PSA. Right from the start of investigations I maintained a very positive attitude since I have known many people living with cancers. I knew I was no exception. Just another human being.

    On the other hand, I am very keen to learn and I took it as a new learning opportunity. As a retired person at the age of 68 I have ample time to search even the entire world if I want to learn something and the world is at my hand's reach through the internet. Being newly diagnosed and entered into an aggressive regimen of treatment, I have gathered a vast amount of knowledge on the subject although I am still in the beginning of my learning curve. It is in this learning process I came to know about oncologists such as Snuffy Myres and several others. I must be one of the few Asians ( may be the only one in Sri Lanka ) making an effort to learn about prostate cancer whereas for many 'ignorance is a bliss'.

    I was diagnosed in March 2015 and the details of my case T2cNoMx were given in my original posting done here in September 2016.

    I am also a member of two well organised Prostate Cancer Support Groups, one US based and the other Australian based. I joined this group through Chuck Maac and through Joel and find this group to be very interactive. Daily I reply to somebody and also I learn a lot from others replies. Only thing, postings very often lack important details including the basic requirements such as the age at the time of diagnosis, in which country one lives and most importantly histo pathology and the cancer staging. These are important to make the replies more meaningful.

    I wrote at length because I have seen your replies quite often with a striking picture. So I have to thank you for your valuable time.

    Hope I will have more fruitful conversations with you in our mutual interest.

    Best regards.

    Sisira

  • Good Morning David,

    Like you, my PSA rose from 2.0 to 29 in the year (2012) between annual physicals! Biopsy revealed Gleason 9sand 10s, so no surgery was suggested. Immediately began triple hormonal blockade of Lupron, Casodex, and Avodart. As someone else mentioned, 4 years ago chemo was reserved for a more end stage treatment, but now it is used much earlier for aggressive PCa.

    What I have learned in the past 4 years is to find the "best" Medical Oncologist that you can afford who specializes in aggressive prostate cancer. I have been fortunate to be under the care of Dr. Charles "Snuffy" Myers. Secondly, you have to know where your cancer is to be able to effectively treat it. For locating soft tissue (lymph nodes), the current state of art is Carbon-11 Acetate PET/CT done by Dr. Fabio Almeida at Phoenix Molecular Imaging. For locating bone mets, the current state of art is F-18 Sodium Fluoride PET/CT, which can be done at many imaging centers.

    Diet matters as does exercise and and emotional well-being. Sad to say, but being sick can become a full-time job.

    I was 65 at diagnosis and 4 years later have taken every drug in the universe to combat this disease! As a friend of mine who is one the same journey says, "If we live long enough, we will be saved by the new treatments". Much truth in that.

    Best wishes on your journey. Stay positive and stay educated.

  • Dear David,

    Joining this support group is one of the best things I have done. and I am sure it will be the same for you. There is no substitute for having a community that you can share your feelings with and feel understood and accepted.

    Get rid of negative feelings. Get angry if you need to. Cancer is a life-changing experience. It will make you appreciate every additional moment. You will learn so much that you never thought you would.

    Have faith, my friend. Somewhere a solution to your situation is waiting to happen. Be ready.

    Fred

  • Diagnosed Gleason 8, age 56, 1999. 17 years later, multiple metastasis, but quality of life is still pretty good most of the time. See my profile for details of treatment. Life goes on enjoy it and good luck.

  • My husband's condition was identical to yours - he took hormone shot for 16 months - had radiation for 43 times - after 16 months quit taking hormone shots - prostate cancer came back in his lymph nodes - now he's taking radiation for 4 weeks and taking zytiga for 3 months - he is in the donut hole now therefore 1st month prescription for zytiga was $2900, Don't quit taking hormone shots

  • Not exactly==I went from normal PSA to 21 in 12 months. A biopsy of Gleason 7 was upgraded to 9 at surgery time--and it was pathologically very aggressive Ductal Cribriform.

    Since my scans were clear--Bones, organs, nodes, and at age 73---it was easy for me to say get it out tomorrow--did not have time to do radiation, and at my age Chemo was not top of the list. I discussed the options--but reading my pathology, and reading research papers on line, and that my cancer tried to resisted radiation--I went the surgery route--waited 60 days to find out what the PSA post Surgery was, still very high---7.4--then went on ADT plus a supplement program I designed---and I went to undetectable PSA, in 3 months, and have been there for several months. I expect the Chemo /Hormone combo is to kill off as much of the cancer cells that have escaped[Metastasized]--before doing anything else. I am surprised that Radiation, Surgery, or Brackytherapy was not discussed.

    At 61 you have some advantages over me at 72/73--but I was a Gym Hog lifting completion weights, of much younger men. Suggest study ask questions, then study some more--make sure you are comfortable with your team. Urologist, Radiation Oncologist, Medical Oncologist. Second opinions if you are not comfortable. You can go to the Prostate Cancer Research Institute and get an Advocate, who has a lot more info than me.

    Since your PSA went so fast like mine, with a High 9 Gleason, just signals most of the time a high level of aggressiveness. So time is important---time is limited, that is the Pca has Metastasized, which is probable in your case--you do not want it to land someplace.

    I am not a Doctor--just explaining what I did--not everyone is the same--a lot has to do with Pathology, and the Mutations that caused your Pca, PSA's, and Gleason's.

    Nalakrats

  • Hi David,

    I'm sorry that you have to join our club. The following site developed by Chuck Maack, an Us Too member from Wichita, Kansas, has been a great source of information for me for the last 8 years.

    theprostateadvocate.com/obs...

    Good Luck, Clint

  • Dave,

    I was diagnosed at age 47. I became a vegetarian within days of diagnoses. Since then I have gone trough surgery, hormone treatments, radiation twice, Provenge, I am now on xtandi plus a mystery drug (drug trial). I have been fighting for 23 years. Life is good.

  • I had prostate cancer.I had the surgery 5yrs.ago.And I'm still not getting a full erection

  • Hi David,

    Of course the news is devastating for you and your loved ones right now, but I would like to give a positive insight.

    I was diagnosed 3 yrs ago with PSA 620 and 2 of of 12 cores in my biopsy positive. 1 was Gleason 7, the other 8. I had metastases in my pelvis, all my vertebrae, ribs, a small one in my skull and a small one on the top of my right femur.

    After a month of Casodex, I started Abiraterone and Zoladex, but no chemo. This time last year a scan showed a reduction in metastases of about 40 to 60%. I then had 6 months Radium 223 and the last scan 2 months ago showed no increase in metastases.

    Over the period my PSA went down to 0.10 originally and very slowly back (up & down) to today at 5.10.

    I have completely altered my diet. For me this has been wonderful but quite difficult. From being a cheese devourer, I now totally avoid dairy and only on exceptional occasions do I eat red meat, (If you are going to eat red meat it should be as rare as possible), but I do eat white fish and chicken 2 or 3 times a week. Lots and lots of fresh fruit & veg, tomatoes, beans, nuts, soya and for me grains.

    In addition to the cancer medications I take aspirin and statins. I also take a list of supplements which include, Pomi-T, CBD oil, Brocolli extract, Cayenne pepper extract, Ginger root extract, Garlic extract, Turmeric, Cod liver oil and Vitamin D. These I take mostly on a daily basis, though for me never fish oil & vit D the same day.

    I know these have helped me, but it is impossible to judge if some are useless!

    I also include most of foods above in their natural form in my cooking as it is known that cooking improves the benefit from tomatoes and turmeric and possibly some of the others.

    Try to avoid tinned tomatoes.

    I have no pain of any kind, I jog about 10 miles every day and have an excellent lifestyle.

    The only downside is no sex life!

    So in these very unhappy and frightening days for you, remember think positively and never give up.

    Niall

  • Hi Niall

    Thank you so much for taking the time to reply. Unfortunately my consultant is recommending 6 cycles of chemotherapy (Docetaxel) which will run alongside my hormone therapy (LHRH). Apparently recent trials show that up front chemo with Docetaxel for 6 cycles improves survival and also overall quality of life.

    The diagnoses shows Metastatic PC, Gleason 9, disease in the prostate and plelvic areas of bone metastases.

    I am just beginning on this journey and like you I eat the right foods and exercise regularly through spinning (indoor cycling), I also play golf twice a week. The sad thing is that I feel very fit and apart form a bit of arthritis I have no pain. I have cut out all dairy foods, red meat and eat fish and chicken regularly. I take black seed oil, home made tomato juice and apricot seeds to boost the immune system.

    I am seeing my consultant tomorrow for a final consultation to discuss the timetable for chemo. I will keep you posted, do you have any questions that I should ask him.

    David

  • Hi David,

    It sounds like you are already doing all the right things. I believe your oncologist is right, combining chemo & hormone therapy is probably the way to go. If you don't already take them, I would ask about taking regular aspirin and statins as they, I believe, as they have been shown to have a role to play.

    If you are taking Xytiga (Abiraterone), I would ask about taking at least some of them with food. Normally it is recommended that Abiraterone is taken with plenty of water on an empty stomach, however it has been shown that about 80% of the dose is excreted this way. This is a huge waste of a very expensive drug! Taken with food, particularly fatty food, (I use nuts as a source), the absorption is greatly increased. I now take one in the evening with nuts and the rest on an empty stomach as recommended. I only learned about this on this site about 4 - 6 weeks ago, so I have been doing this about a month. My PSA dropped from 5.7 to 5.5. Who knows if such a small drop is due to my changes, but when my PSA starts to rise at a greater rate, I will start to take 2 with food and so on to three and eventually four.

    You can have every hope as new drugs and immunotherapy treatments are in the pipeline and hopefully we will benefit from them.

    Best wishes,

    Niall

  • I'm 54, had routine exam, PSA was 246. Week later I found out I have PC with spots in several areas of bone in the scan. I've had 3 cycles of chemo and hormone therapy. I'm lucky, only side effects are lack of abilty to taste foods for a week after chemo and I get tired easier. Testosterone is zero and I have hot flashes and some night sweats. I have 3 more cycles of chemo, once every 3 weeks, then bone scan to see what's up...one day at a time brother. Hang in there.

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