Young prostate patient

I am 46 and have stage 4 prostate cancer, diagnosed at 45. not sure they even know what to really do with me. 6 rounds of taxater with Luprin and 3 months after growing again. Moved to casadex, 2 months in PSA still elevating so they just started me on casadex. Sure hope it does something. Sure am sorry for every cancer oatient out there. Am curious if there is anybody out there my age with this.

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  • Ssullivan,

    I was diagnosed just before my 44th birthday. I'm 54 now. I have advanced disease, but I'm still kicking. It seems there are still plenty of options for dealing with your disease. Where are you? Are you being treated by a medical oncologist?

    Yost.

  • Yes, I live in Indiana. Local doc in Ft Wayne and my main doc at the IU medical center in Indianapolis. Glad you are kicking it.

  • Gee Yost, didn't realize you were that young when diagnosed. Glad you're still hanging!

  • Ssulivan, I was 46 when diagnosed a year ago with stage IV prostate cancer, Gleason 9, PSA of 286 and disease in my pelvic and abdominal nodes. I was told by first Urologist I had 3 to 5 years to live and was a wreck until I got my feet grounded. I left his office and never looked back. I am currently at PSA < 0.01 and no evidence of cancer showing in my scans. I learned there is more out there than the standard form of treatment that is offered by these East Bumf*** hospitals and the general oncologists and urologists working in them.

    READ and then continue to READ everything you can about this disease. Don't read anything older than 3 years and check this site often. If its out there these good men are on it as fast as any good urologist or oncologist. You have to be your own advocate and know what's going on with your disease. Nobody is going to meet you half way, you need to make things happen for yourself.

    Get a doctor that specializes in prostate cancer. If you need to buy a plane ticket to do that so be it. I highly recommend the urology department at the Mayo Clinic in MN. They will offer you unconventional treatment that other hospitals wont. There are other great hospitals but it is the best one I personally have been to. You need to be at a hospital that has a data base of thousands of men and willing to use care outside of the normal prostate cancer box. It is generally more aggressive in younger men and although it isn't typical in younger men, I was told by a major league doctor its not as uncommon as what you might think.

    Give exact details on your condition such as mets, Gleason, scans and PSA. We are all here to help.

    Ron

  • I'm 57. Two yrs ago I had very similar numbers to yours ..I too am currently enjoying your status of no signs.Im thanking you for the advice for the guy starting his trip with apc. Think and try almost anything to improve quality of life.I also was told 3-5 .So here we are doing are best....

  • Such good words Ron. Excellent read :)

  • Really sorry to hear about your diagnosis at such a young age. Glad you found this group. We're here to help and support you so I'm glad you are with us now. We are with you too in many ways that can't be expressed. We are all "in the same boat" here more or less. I too was diagnosed with stage 4 right off the bat. I'm a little older, but it's no easier for any of us.

    Have you been offered any of the other second line androgen blockers such as Xtandi or Zytiga? Xtandi, for example, is like a super version of Casodex and quite a bit more effective.

    I'm also wondering about the biology of your cancer. It sounds like it's not as hormone sensitive as many others are. I'm guessing they did a biopsy. If so, did you get any information on that from the path report such as if your cancer has neuroendocrine differentiation? Also how extensive are your mets? We can offer more if we know more about you cancer. Hang in there and keep us posted.

  • I will get more info. Found in my bladder originally, also in abdominal lymphnodes

  • I had both of those!

  • Spread the news from where you are. According to my doctor: At the age of 40 friends and men of this world must diagnose for prostate cancer. Results could come out negative then check up every year.

  • One more thing. Try to find a face-to-face prostate cancer support group in your area if there is any way you can. These groups are very helpful for your mental and emotional heath. We all need more than treatment for our disease.

  • Hi Ssullivan19706. I was diagnosed prostate cancer at the age of 44 (2013), stage 4, Gleason 7, meths in bones and lymph nodes (too late to be operated on). The first thing I did is I did not get depressed. The doctors put me on Eligard+Casodex, or Zoladex+Casodex. As I had meths in bones, I got Zometa every 28 days. My PSA went sharply down, then in 2 years it started growing. My body became resistant to those medicines. In June of 2015 doctors put me on Zytiga (abiraterone) + Prednisone (10mg per day). Then I had serious pains in my right pelvis, I could barely walk. I got radiation therapy on that part in 2016, which relieved my pains a lot and I could walk. Now I get resistance to Zytiga. Doctors say it's time to do chemo. This is it in brief. Do not get depressed. You have to live with that illness. Take care man!!!

  • Thank you, I am living life to the fullest, no depression, I am still kicking. Do. It wish this in anybody. But it has been an awakening.

  • You are very strong with a great attitude.God bless you. Hope things go well for you.

  • Hi Ssullivan, I was diagnosed age 49 last year. I understand what you're going through. I was metastatic straight off the bat too. It's rare for young guys, but I've met several either in person or on the net since then. I agree with the other guys who have commented. It hard not to think about our uncertain future, but someone on this very sight encouraged me to get busy living rather than dying and that's been an excellent source of inspiration for me. Keep in touch, cheers Paul from Australia.

  • Thank you. Doing great mentally. Living life and appreciating all I took for granted. Australia is on my list.

  • Good news!

  • Hi Ssullivan - I'm sorry you are going through this. I was diagnosed last August at age 44. PSA 15, Gleason 3+4, 12 core biopsy all 6 cores positive on the left side. Had a spot on the rib that was 'consistent with metastasis' so for the first couple of months I didn't know for sure what stage I had progressed to. Had RP... last PSA was .01. Positive 'focal' margins from pathology, otherwise negative for spread. Doing what I can on diet and exercise (and supplements) to at least slow any further progression.. I'll never be the same but I'm still here, just attended my kids 5th grade and 8th grade graduations this week. Forums such as this have been extremely helpful in finding information to be your own advocate and sometimes it just helps me knowing there are others out there who have faced the grim news, done what needed to be done, and lived well beyond what the doctors predicted. We're all here for you man.

  • Thank you. I am in a good place. Daughter just graduated and heading to college. Just in the 24 hours on this forum has been amazing. I felt alone for my age. But no more. I am also here for anybody.

  • Right after diagnosis, I found that feeling alone was hardest thing for me. As soon as I found others in a similar situation it was such a relief. That's why support groups are so valuable. Hope you can find one.

  • Love those kids! That 's a blessing...

  • I was diagnosed in 1999 Gleason 8 at age 55. A summary of my treatments and progress is in my profile. It may give you an idea of what some of the possibilities are. It hasn't been a cake walk, but quality of life is still pretty good. Definitely more good than bad. In all probability you have a lot of living left to do. If you haven't already, I suggest you go to M.D. Anderson in Houston, Sloan Kettering, or one of the Mayo clinic's for work up and second opinion.

  • Thank you, at IU medical in Indianapolis as of now. MD Anderson has been contacted and may be next step. But over all very impressed with the IU Simon cancer research cente in Indy. I appreciate you and your reply. Thank you so much.

  • First, you can control this. I was diagnosed at 46. We all go through shock and anger but the sooner you get through those the better off you will be. I felt I ran into dead ends every step of the way. I agree with many on this website, find the right doctor no matter the cost. I went to City of Hope and finally found a doctor that wasn't afraid to try. I accepted the fact that my life had changed and would never be the same and moved forward. I had robotic surgery January 2009. My last road block was that I had positive margins when the Doctor talked to me afterwards. I didn't let that determine my recovery. I continued to be thankful for every minute of my life and to take care of this body. From eating the correct foods, exercise and keeping my spirituality in check. There is a reason you are where you are.....nothing you have done, just life. Choose to fight, choose to be thankful and choose to help others. I wish you much Light, Peace and Love!

  • Thank you so much. I am in a great place. Impressed with my docs. Feel confident the Zytiga will work well. Just feel blessed to have found this forum. No longer feel alone for my age. Thank you again

  • I would like to thank all you younger guys whose posts here verify that PCa knows no bounds. And, it's not surprising that it's not only PCa, but a wide variety on cancers. I was Dx at 50, and I thought I was too young.

    Joe

  • I was diagnosed two months shy of my 43rd b'day in 2002. Gleason 4+3, scans clear. Had my prostate removed and it was confirmed that lymph nodes and seminal vesicles were negative for cancer, but my PSA started rising 6 months later. Had radiation and my PSA dropped to undetectable for two years, then began rising very slowly, 25 month doubling time. Finally in 2012 my PSA doubled in one month. So my treatments began. 5 years later and I am still here with stable bone mets and no pain. Failed all previous treatments (xtandi, zytiga, doxcetaxel, etc.) and two clinical trials. I'm currently on cabazataxel/carboplatin since January. PSA and bone mets have been stable. I still jog 4 miles, workout in the gym and travel often. So you can still live a full life with this dreadful disease.

  • Thank you, I am doing great, work my butt off. Golf, boat, ski. Like nothing is going on. Just happy to have found this forum and finally know there are people my age. Not discounting anybody with this disease. But felt pretty alone about it till yesterday joining this

  • Pls call me at 714 310 5717 same age lets talk joe

  • Works by today Joe, but I will. Feel blessed from this forum to know I am not alone. Not discounting anybody with this. But everything you see is for the age of man I hope to get to. Ty. Talk soon. 269-210-4457

  • I think u wrote the wrong number

  • Sorry 260-210-4457

  • Ssullivan -

    I was diagnosed at age 45. PSA of 4,196 at time of diagonosis in late January of 2015 and then over 5,300 when starting Lupron in early february. Started chemotherapy two weeks after Lupron and PSA began to rapidly decline. Enrolled in a clinical trial at MD Anderson to evaluate feasibility of debulking heavy metastic burden through surgery and was randomized to the surgery arm of the trial. Had surgery in September of 2015 to remove prostate and pelvic lymph nodes. I believe some urological oncologists believe in this path and will provide this surgery in certain cases and it may be a path for you to evaluate. PSA hit a low point of 1.25 in late 2015. Started to develop resistance to androgen deprivation therapy (ADT) in March 2016 and started PROVENGE after seeing a small rise in PSA for three consecutive months. PSA actually went down after PROVENGE which is not typical and I remained on ADT only throughout 2016 and into early 2017 when PSA started to rise again. Started Zytiga in February 2017 and presently PSA is 0.19 as of last week. As others have stated, it is a journey and getting involved in your care, doing the research through this forum and utilizing support groups if available in your area is highly recommended. Not sure if it makes a difference for everybody, but for me I found help through changing my diet to a vegan diet and exercising every day has helped improve my strength and give me energy. The early days of chemo were a challenge as I was mentally a bit dull. Took a solid 6 months to recover from the chomo and adjust to the emotional changes from hormone therapy.

  • Thank you. I am in a good place and confident with docs. For sure has been a journey. I wish you and everybody wel. I appreciate the support and you as well as everybody have my support

  • I'm now 59 and still motoring along fairly well. I was diagnosed in 2002 at 44. Hang in there! Maybe check out MD Anderson in Houston or maybe Mark Scholz in Marina Del Rey, CA.

  • Thank you. You are an inspiration.

  • I was 45 in the same boat. DOT phyical found it. Gleason of 7 with a Pss of14 going up to 41. I had the prostate removed, it was much harder then . Now you have the Divince system. Back two work in 3 days. I done hormones , 35 radiation session , two cancer trials . Last march I had provenge. December my Pss was at 41. Started a trial for Xtandi, today June 10 2017 my PSA is 0.07 never give up. Pardon the spelling my Boston Terrier is sitting in my lap. And I'm also 60 now! Long strange trip it's been.

  • Glad you have been rocking this. Thank you for the reply

  • to Ssullivan19706

    Remember what they say about Pca "most men die with it rather than from it".

    Try to keep your sense of humor.

    Keep on trucking....

    Good Luck and Good Health.

    j-o-h-n Saturday 06/10/2017 11:17 AM EST

  • Sorry to hear that, I was 53 when first diagnosed, I don't know what happened, this disease is supposed to be for old guy's, so now we have to fight this thing, I did surgery and had a prostatectomy, then I I did Lupron and that worked for about a year, in fact I still take Lupron every three months, I did the Zytiga and casodex and all the rest of it too, I am now going to take my twelfth round of chemo Jevtana on Monday and my PSA is around 10 (I am on my way for blood test now) and we keep fighting, I love my family so I keep going forward,

    good luck to you , I am sorry this happened to you, keep fighting on.

    Jack

  • Did not realize the response I gave received. Feels good to not be alone. I have been rocking through all this. Kicking but at work, golfing, boating, fishing, skiing. Just living life like it's not there between dr appointments. I am sitting at my desk with tears of happiness from your responses. If I can help anybody please let me know. Thank you all so much.

  • You have the right attitude for life and that's so important. One big thing I have learned from this is: In this moment of time you are alive and the same as everyone else. Now is eternal. There is no dying, only living. This diagnosis really has really taught me how to live in the present moment of time and has deepened my appreciation of everything in life. You really experience the true value of your life.

  • Hey Sullivan... Glad you have been helped by this forum. I have been too. I learn a lot from the men (and women) here, about cancer and about living with cancer. I was 42 when originally diagnosed with Gleason 8; 44 when I learned it had metastasized; I'm 48 now, going on 3 years of ADT and my PSA is still undetectable for now. I never thought that I was going to live forever, I've just had to adjust my assumptions a little bit; but I'm living and loving better because of that. Best.

  • Sullivan, I couldn't have said it better what these find folks have described. I'm in the middle between the 4th and 5th round of Taxotere. My onc said I am responding well from the treatments. Lupron is administered every 3 months. The best advice I can give you is do about your business daily and try not to think about it. I've come to embraced this " c" word and I have not and will not let me stop me from the things that I want to do with my family. We are going to France and UK at the end of the month. I told my onc that I wanted to retire in 4 years, he said "why", I expect you to live years beyond that.

    Nick

  • I was diagnosed at age 46, Gleason score of 9, PSA 39. I am now 71. For some unexplained reason I became a Vegan right after the diagnoses ( since then I added fish, some eggs and diary.) I have gone through many alternative treatments, i.e. selenium and vitamin E, Eassic Tea, etc. Do some research and find some alternative treatments. Go with what you feel comfortable with while on traditional treatments.

    Don't discount meditation and guided imagery.

  • I'm 57 and they toldme I was young to the party. You're just a kid! Your age Hopefully gives you better strength to endure whatever you have to endure. It was mind blowing for me at 54 .Cant imagine at 44. Keep the faith!

  • Do you know your PSA score? I was diagnosed back in 2012, my PSA was 400. I'm 58 Y/O now. I had no symptoms in 2012. Since then I've been on Lupron and Casodex. I had a bone scan and they found a tumor so now I'm on Xgeva, Lupron and Casodex. I go to the Cancer Treatment Center of America (in Tulsa, OK) and they are very knowledgeable. For those of us with Stage 4 Metastatic tumors there is a new drug called Keytruda that just got FDA approval. So I may ask my oncologist about that?

  • Ssullivan, so sorry to learn about your diagnosis. My recommendation when I hear about PC diagnosis at young age is to get a gene test. Nowadays it is cheap and easy.

    I did this and discovered I had a BRCA2 gene mutation which often manifests in aggressive cancer at an early onset. The beauty of this discovery is that it can provide you with additional tools to fight the cancer.

    It is also useful to know if you have kids so that they can be ahead of the curve. I found this site which you might find helpful: color.com/

  • Ty you for the information and forvreaching out

  • Let me share a PROVENGE immunotherapy-related story.

    Diagnosed in 2008, had Cyberknife focused beam radiation treatment. PSA dropped way down. After 2 years it started creeping back up again. Then had Casodex pills, LUPRON hormone shots, XTANDI pills, and finally ZYTIGA pills over next 8 years. All worked for a while, until recently when PSA shot up to 35 and a CAT scan revealed small tumors in lymph nodes.

    Oncologist doc says try PROVENGE blood swap treatment. Went for first withdrawal 4 weeks ago, nurse could not get blood to come out of my arm veins fast enough. So had to get a catheter pushed into my chest to penetrate an artery in my neck. Went back again 9 days ago and got blood withdrawn thru the port. My blood (mostly the white cells) got sent to PROVENGE developer Dendreon in Atlanta and then after mixing with the PROVENGE fluid, was to be shipped back to my local doc for infusion back into me on June 5. However Dendreon people found my blood was contaminated, and called my doc - he sent me to emergency room ASAP and sure enough I had bacteria in my blood from when the catheter was inserted into me 3 weeks prior (5/20/17). So I was just hospitalized for 3 days with the blood infection (serious) while they took out defective catheter and treated me with strong antibiotics. Just got discharged from hospital 6 hours ago and relaxing at home now.

    In summary, very frustrated due to what happened, and not sure if I want to try the PROVENGE process all over again. PROVENGE extended life 4 months on average in FDA tests. Is it worth the complex treatment process and infection risk like I had ??????? Not sure.

    Ron - Connecticut 6/11/17

  • Ron, rather than continue to clutter up the Replies to the original Post above, I just sent you a Message about my own experience with Provenge leukapheresis in Oct 2016. Look for it. If you have continuing concerns, you can always begin another new Post of your own.

    Charles

  • Thanks for posting. It gave me the courage to reply and put out there a bit of my story. I was diagnosed a year ago, also at age 46, after seeing blood in urine. My PSA was at 1200 with bone mets all over. I was really shocked, and frankly still am. Docs immediately put me on Firmagon and started docetaxel, as per CHAARTED results, and also Xgeva (for bone mets). I was doing ok for the first 3 chemos with my PSA going all the way down to 6. I was so happy. But then I started shooting up again with worrying doubling times, so stopped chemo after my 5th cycle.

    I was then send to a study and was put on an abiraterone/prednisone arm. But again, to my despair, after less than 4 months on this combo, with a rising PSA over 300, my doc switch me to the other arm of the study which is chemo cabazitaxel+prednisone. The wash out period between the 2 treatments made it even worse with my PSA climb over 600. I was very discouraged. In that period, I was also sent to genetics who found BRCA2 mutation. It seems to be linked to aggressiveness but not sure right now what the therapeutic implications are.

    I am now at my 3rd cabazitaxel chemo, and so far my PSA remains significantly unchanged, but it has not gone up. I do bone scans and CT scans regularly, and the good news, so far, is the cancer cells have not reached the soft tissues, so no vital organ implications as per scan. Still seem to remain in bones. I really wish there were more options out there with new ways to hit those prostate cancer cells. I read and hear about new therapies in the pipeline, but somehow I feel like I'm coming close to a therapeutic wall.

    Sorry if I'm a bit down. It's been a really crazy year on a personal level. I still am pushing. Pushing for happiness and mindfullness. I have great support from family and hospital, but results of therapies are really dragging me down at times. I go in dark places in my head, and I can tend to keep my worries to myself. I guess I'm reaching out now also. It's not easy to talk about this to my surroundings. I live with this new reality all the time but don't want to bring other people into my struggles all the time.

    And of course, I deal with lots of anger. Anger for not having been tested earlier. Anger for having a flawed immune system. Anger for these cancer cells wreaking my body. Anger for a closer Damocles sword above my head, and a more uncertain future. Anger for therapies that don't seem to make a dent in my cancer. Anger for having my testosterone being robbed out of me. Angry it's the primary way to control those punk cells. Angry because it's also robbing me of my libido and the healthy sex life I always had, and enjoyed immensely. I still have normal erections so far but my lack of libido and drive changes the game completely. In barely a year, lots of changes to deal with, to accept. It's definitely a physical and mental struggle for me. And it's frustrating at times telling my doc about all this because, of course, sex and seeing my body "feminizing" shouldn't be my priority right now. But not so long ago, I was a different person. I loved sex and being in a great shape. I'm also an adrenaline junky, climbing, skiing, jumping off airplanes, kickboxing, etc. But my doc is very conservative, and doesn't want me to risk any kind of fractures. I feel like a porcelaine doll. He's even concerned with yoga, and rollercoasters. I mentionned Radium-223 to perhaps get rid of some bone mets, but he doesn't seem too enthusiastic about it (if anybody here has personal experience with this...)

    At the end, I know I have to come to terms with my situation, but I still feel so young...it's hard at times to wrap my head around this. It's a fight to not let these anarchist cells hijack my spirit. This new normal is scary, I won't lie. I'm going for my 4th cabazitaxel chemo next week with pre-chemo blood results so i'll know more, but for an adrenaline junkie, I have to say, I'm not liking this coaster ride. From the little experience I have though, I can tell you to hang on, write, talk, scream, sweat it out, and be your own informed advocate. I wish you the best. And thanks again for pushing myself to open up to this community.

  • When you have your scans sent to MD Anderson Cancer Center, also send them to Dr. Robert Amato with Memorial Hermann Cancer Center and the University of Texas Health Science Center (Medical School). Both are the in The Texas Medical Center. I was Stage 4 at 56 and am undetectable at 70 today. My last Lupron injection was in February 2010.

    Gourd Dancer

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