Freaking out

I am 51 years

Old and had rp feb 11 after biopsy showed 3+4=7 Gleason on 4 of 12. PSA was 6.7. Pathology after surgery was 3+5=8. First post op PSA was 1.1 and has risen to 3.1 in only 2 months. All bone scans and CTs have been negative but getting the news today that my PSA triples in 3 months has me paralized that my cancer is growing so fast I will not live long. No symptoms at all.... Going to Cleveland Clinic for second opinion next week. Not sure about radiation or hormones. It's all overwhelming and I am having a hard time coping and living life now. My kids 12&14 don't grasp the seriousness I don't think. Anyone else in similar situation? Any advice out there? I'm really scared. 

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  • So sorry that you have to deal with this.  Please know that you are not alone! The fact that the CT and bone scans are negative may indicate that while there is cancer, it has not grown to the point that they can pick it up.  That may increase your chances of recovery as it would be easier to kill.  If they offer it, you may want to get both radiation (external beam) and hormonal therapies.  It could knock down the cancer before it grows to the point that it can be detected.  There are others in this group that may have better advice and information.

    I have similar feelings.  I am 58 years old and have an aggressive type of PCa where your PSA does not go up that much.  I am two weeks post surgery and was told it was high risk  (G 8, T3N1) and that they did not get it all, and that one lymph node was 100% cancer with cancer in the lymph ducts where it can go where it wants.   Have meetings next week to discuss radiation and hormone.  My first post PSA test will be on May 18 and I am scared of what it will show.  

    However, no matter how scary it is for the both of us, we both need to fight it for the ones we love.  There are a lot of positive stories in this group of people fighting this cancer for decades and winning!  They also have a lot of information.  

    Let us both be able to tell others our success stories ten years from now!

  • Thanks for your words of encouragement. Stay strong. I wish the best for you and all in this fight. 

  • Hi Dont358,

    We're not so different . Here is my stats:

    Regular yearly psa test since 2006 because of family history of PC. Psa had always been near 1.0.

    01/2013 psa showed slight rise to 3.2.

    Inconclusive ultrasound so another psa test in July, psa up now to 9.1

    08/26/2013- DRE showed a symmetrical, nontender, nodular right lobe (cT2b), Gleason score of 10 (5+5), involving all 14 cores that were examined, positive for perineural invasion.

    -09/23/2013- WBS showed diffuse metastatic disease to the bones, CT scan of the abdomen and pelvis that was negative for visceral or lymph node involvement.

    -09/25/2013- ADT started (Lupron)

    -02/5/14- started MDV3100-09 (STRIVE): A Multicenter Phase 2, Randomized, Double-Blind, Efficacy and Safety Study of Enzalutamide vs. Bicalutamide in Men with Prostate Cancer who have Failed Androgen Deprivation Therapy.

    -07/30/2014- Nov 2014 palliative Docetaxel chemotherapy (c 6)

    -Clinical and radiographic progression, MRI spine showed mets, underwent radiation /SRS to C Spine 1800 cGy in 1 fx On Dec 12, 2014 for neck pain.

    -April 2015: Started on Xtandi       

    March 2016: xtandi no longer working had palliative Radiation to pelvic area and middle back for pain.

    Discussed second-line chemotherapy with Cabazitaxel vs. Trials vs. AA/P and Radium-223

    Favored to proceed with zytiga and Radium-223 after Radiation therapy. 

    Start Radium-223, will hope for some longer term results.

    Can't hold job due to symptoms of treatments and foggy head from constant pain meds, but feel blessed to still be here and grateful for time with wife, children and grandchildren.

    I also had no symptoms and I have two kids also. The sudden diagnosis made me see what is really important. So I have tried to go forward with quality of life as my main concern. Cleveland clinic is one of the best hospitals with excellent Drs. You will find that you can handle whatever they throw at the cancer because you won't be doing it just for yourself but your doing it for your family too.

    Ask questions, as many as you can, then pick a treatment. I know it's hard not to freak out sometimes but try to find something good in everyday and don't second guess your decisions.

  • Apply for SS Disabiliy with SSA and God bless!

  • You are going through a lot. I was diagnosed a month ago.

  • You might  consider a C11 acetate scan at a Phoenix molecular imaging or  choline 11 scan at Mayo Clinic in Minnesota. Theses scans can show where cancer is a low psa levels such as 3.1 .

    The Cleveland Clinic should be able to direct you to a scan such as the ones mentioned above or other scans that can detect location of  persistent or recurrent prostate cancer.

  • hope your understandable fear does not lead to a quick choice on a procedure ... gather options, the more you have to chose from the more likely you will chose the one most appropriate 

  • If I may give you my two cents. First, just relax. You are newly diagnosed. And your second opinion will probably confirm your first diagnosis.

    You will find more support than you could imagine here. Each one of us has a story to tell, some more intense than others, but we're all fighting the same thing. Please listen to what the long time guys have to say. That's where you'll learn all about it.

    Good luck to you,

    Joe

  • Just a f/u, don't go dwelling on numbers. They really don't mean much in the scope of things. Guys here have astronomical numbers, some low numbers, it doesn't matter one bit. We still have to deal with it. I see it this way, either you got it, or you don't. If you got it, you're soon to be in the brotherhood of manopause. Enjoy what you can now.

    Joe

  • Haha!  "Manopause..."  I'll definitely use that one :-)

  • I don't want to undermine the value of this excellent web site where I am sure you will get lots of advice and support, but let me add to your arsenal of resources by suggesting you have a look at the Prostate Cancer forum of the HeallingWell web site.

    There are some extremely well informed individuals there, including several semi professionals who work alongside prostate cancer specialists.

    They are right up with latest treatments and there are several participants with numbers much worse than you who have been around for many many years.

    Good luck, I am quite sure you will be around for a long time yet.

    Chas

  • I was in a similar condition 14 years ago and I was scared and angry and determined that it was me who was going to win this battle. First, let me say that at least you are lucky this happens 14 years after it happened to me. A lot of treatments have been developed since do you stand a much better chance than I  did.

    Now, what treatment to chose: traditionally you could chose between operation, radiation and hormones or a combination. Today I  read that the prominent oncologists are suggesting Taxotere (chemo) at an early stage. I had Taxotere a year ago, and I  must say that the side effects were far lighter than I had expected. The side effects from radiation and radical prostatectomy are far far worse. The good thing with chemo is that it will kill cancer wherever it sits, not just in the prostate. The CT and bone scans are very insensitive and it takes at least 10-15 mm lesions to ser them. 

    Hormonal therapy will not cure as far as I know,  just try to get the cancer into remission.

    My psa is now 490 and I'm going thru a Xofigo treatment since my bones are full of lessons.  I'm running out of options soon. My treatment time line

    Brachytherapy and external beam radiation (simultaneous. Gleason 4+3, psa 10, 14 years ago)

    Hormones, zoladex, casodex, avodart (11 years ago)

    Zytiga + prednisolon (clinical trial )

    Prostvac clinical trial (stopped after 4 months, psa 200)

    Taxotere 9×3weeks (psa down to 50)

    Xofigo (psa 200 at start, now 490)

    I still have 3 more injections to go and psa usually doesn't drop until after 6 months. 

    And now the best:

    I HAVE NO PAIN (and never had), AND REASONABLE ENERGY! I'm now 69 years old. 

    So,  don't panic, just fight for the best choices! 

  • I had a similar situation. I was treated with Proton Therapy. My PSA bottomed out at 0.5, then started to climb to 5.9. Subsequent scans (and I had them all, before treatment and then the same scans after) showed negative. Current scan technology can't detect PCa unless you have a mass or bone lesion. A new type of scan, an MRI with a probe inserted through your rectum is what detected a suspicious swelling of my left iliac lymp node. Its biopsy showed cancer. In the meantime, my PSA has gone up to 7.8. I have undergone Lupron treatment and for the past 9 months my PSA is undetectable.

    It's the nature of the beast. Once it's out, one can only hope to control its progression. You are in good hands at Cleveland Clinic. Even with the current regimen of treatments, men with metastatic PCa have lived long lives or survived it. There is great hope you'll get to know your grandkids well.

  • The best advice I can give you is go to MD Anderson in Houston, Texas for your second opinion. They are the world's best cancer hospital for 10 years now. US News &Report has ranked them that along with other countries and hospitals an health organizations. Do your self a favor an see the best you deserve it. I had Proton Therapy there in 2011 for my prostate cancer.

    Michigan Jim

  • I found myself in a comparable situation after brachytherapy in 2004 and a laparoscopic RP in 2010.  I had no choice but hormone ablation.  At least I am still alive and still asymptomatic.  I tell myself that the side effects from the hormone therapy are better than the alternative and ultimate side effect of doing nothing at all. 

  • Have you considered radium-223? Designed to kill micro metastatic cells before they can be detected on scans. Worth asking about.

  • I'm sorry to hear this.  I'm just a few years older than you, and our DX and treatment were the same, except my pre-surgery PSA was 17.  My surgery was March 4th, 2016, and I am about to have my first PSA in June.  I relate to your fear.

    I was terrified when I got the news back in October, and had to deal with a whole slew of emotions (and so did my wife, unfortunately.)  My GP gave me an Rx for some happy pills, which I thankfully never filled.  Even though I was struggling, I thought, correctly in retrospect, that I would do better if I allowed myself to be as present as possible through the ordeal.

    You're scared now.  Understandably.  But there are worse things than being scared. Try to be with it and see how you do.  You will be surprised how quickly you can adjust to the sensation if you don't give it more meaning than it deserves.  Running saved my sanity, and still is.  Find something life-affirming that works for you.

    As others have pointed out, don't obsess over the numbers.  They really don't mean much at the end of the day.  As my buddy Joe pointed out, either you have it or you don't, and if you do, then you deal with it one step at a time.  Guys here who have been down that road will help you get through it.

    I will be holding you in my thoughts, and hope for the best possible outcome.  I hate that you have to be here, but I'm glad you found us.

    Do be well!

  • Interesting to see the different perspectives here.  There is a book with an amusing title called, "How Not to Die."  

    As someone who strives to understand and embrace the utter impermanence of life on this plane, and with growing awareness that Death is a necessary part of life, I plan not to read it.  I am much more concerned about living well in this moment I have been given, what it means to be here, and what life is really for.

    Your mileage may vary.

  • I already had an issue with insomnia and was taking lorazepam. After the diagnosis I told my doctor that now I really had a reason for insomnia. I can distract myself, or spend time like this studying the enemy, but it is when my head hits the pillow that I can't turn off my brain. No shame in getting some help in falling asleep. The shock is wearing off now after a month.

    Good luck with your condition and I hope you get the best medical team in your corner.

  • Freaking out is what we've all done.  You are not alone.  I know that sometimes doesn't make it any better to hear.  As the previous men have said the numbers don't really matter.  I've learned that's true, and yet it's difficult sometimes to not let the numbers get to you.  I had several second opinions, asking questions, and thoughtful decision making are key.  As men have said before, you have time.  No need to rush to a treatment decision.  One of my second opinion docs had me do a sodium fluoride pet scan that detected my 3 bone lesions that were as yet undetectable by regular CT scans.  I still have the same 3 mets, they appear brighter on current scans but docs say that could be from just a better view and isn't positive for growth. 

    People in my life shrink back at the notion of cancer and my future.  Most don;t know what to say or how to act.  Your sons may find it particularly difficult to deal with your situation from fear and anger.  After all you are their dad.  Just because they don't seem to realize doesn't mean they really don't.  Give your family and yourself time to adjust to this.  Realize that your doubling time of psa doesn't mean your time is running out.  We have all had the same feeling as you and have learned that numbers do not define us nor control our destiny.

    While you are not at this point, what I've come realize is that I am in some ways a better man as a result of my experience with prostate cancer choosing my body as a host.  I live for now, see the beauty around me, am clear about who I am and I appreciate the gifts I have.  I've learned to love myself, speak my mind, not care about other's opinions and have created my "I will list" (I hate bucket list).  I look forward to getting older where before I hated my birthdays. I am soon to be 58 and was diagnosed at 55.

    Dealing with prostate cancer is a mental game.  We all die.  It's what is supposed to happen.  The gift in this experience is that we get to live before we pass, while many people just exist for their whole life.  We get to appreciate that which we are and what we experience.  We understand the power we have to actually live fully and completely.  We can say fuck it and really mean it.  Shit that matters to most people doesn't matter to us.  Don't get me wrong we got our own shit that matters but we have our tribe of men, this support group here and other ways to be successful with the notion of possibly being closer to slipping on the banana peel than others around us.

    Believe me you are a man with a future!

  • Hi :)

    Glad you are getting a 2nd opinion...... Just because you should.  As for your children. ..... They are at the ages where is difficult to grasp.  Just slowly keep them posted on your progress and they may eventually start asking questions.  My best wishes for a remission ;)

  • Is this a situation for Genome Sequencing????

  • I had RP at 49 in 2003, pathology showed positive margins. I entered a 2-year CALGB trial - mitoxantrone, prednisone, casodex, and zoladex - the chemo was very mild, the androgen deprivation brought my PSA to undetectable - and my testosterone to 'castrate-levels'. After the 2 years my PSA started rising along with the testosterone. I started looking for other trials - and found a Vitamin D trial out of Roswell Park in Buffalo NY. I took 10,000 IUs of Vit D3 for a couple of years and that took my doubling time from 4 months down to about 18 months. That bought me some time. [VitD above 100 is considered toxic...they talked me into stopping when I hit 140...major side effect was muscle cramps..they reminded me that the heart is a muscle...] Anyway, I found a couple of trials at NCI - those trials didn't do much, but the technology of the scans had improved enough that they were able to locate where the tumors were. Had 'salvage surgery' about a year ago, and so far PSA is undetectable. Moral of the story - research as much as you can, find a trial that fits your needs. AND - NEVER GIVE UP!

  • Lots of wonderful replies here, I am so glad to be a part of such a great support network. Don T I think it is a mistake to get all freaked out over one psa, they go up and they go down, sometimes I think it is lab error , but it is common, first get retested, and as someone said already very wisely , radiation to the prostate bed can knock out micrometastatic disease that has escaped the prostate Bed and begin Hormone therapy, HT  can put you in total remission, and if you do well you can go intermittent, some men go off for years and years while watching psa.  I was gleason 10 with 5 out of 6 cores, BPSA 148, stage 4, 10 years ago at age 49 and not given the option of surgery. Been on various hormone therapies for 10 years now. debulking the tumor is a huge benefit for you I believe. Stay vigilant, there have been many new therapies developed in the last 5 years , and there are more on the horizon.

    I wish you the best, stay strong!

    Dan

  • My advice to you is to first know you have a very good chance of killing this monster.

    You need to help your doctors by doing your part (Building your immune system.)

    I would keep away from sugar, dairy products, all meat, chicken and all process dead food.

    Start a vegan diet of only organic fruits, vegetables, and seeds. This will make your body ALKALINE and not ACID. Get the Ph strip to check you Ph level every other day. Keep it above 7.25.  Cancer has a hard time with an ALKALINE environment. 

    Include in your diet every day (Organic) Green tea, Pomegranates, Slightly cooked tomatoes with small amount of olive oil, Cur-cumin with small amount of black pepper, Cayenne pepper, Berries ( strawberries, raspberries, blueberries). One lemon 2x/day.

    I would also get some supplement: B17 (apricot seeds), Organic flax seed powder,

    green tea, Vit. D3 ( you need to bring your Vit.d level above 70 ng/ml),

     probiotics with enzymes, Essiac herbal extract from Canada , 

    Also look into:  Semi-contra, Graviola (soursop), Astaxanthin, Phellodendron Bark, Huang-Qin roots, Amal Powder, 

    Get the book by Dr. Michal Greger, "How Not To Die"

    Exercise 30 min. 5 days/week. The oxygen you increase in you body also fights cancer. Stay positive and try to be happy and reduce your stress by letting God be your guide as you go through this difficult journey.

    Find the best Doctors with excellent results. 

    Doing all the above will give you the confidence and will give you control of your health....Your doctors will do the rest...

    God bless and remember you are not alone....

  • That's interesting.  Please do share with us your personal journey with Prostate Cancer.  Thanks.

  • Dont358

    Sorry to have to meet you this way but I hope I can put you in a better place. I had RP last May 11th. I was 58 years old. At the time I was very frightened having a biopsy Gleason score of 4+5=9 and a PSA of around 12ish. My mindset at that time was that I would get this thing out and that would be it. All seemed to be that way when pathology came back as negative margins and no lymph node involvement. Final pathology determined Gleason 4+4=8 with Tertiary 5 component present and it did have Perineural invasion. First post-op blood test revealed a PSA of 9.11 and my doctor was shocked. Must be a mistake. Another blood test was taken that day and it came back 9.6. Yikes that was over a couple days. Most likely metastatic or micro-metastatic disease that had already spread elsewhere in my body. Next up was CT and Bone scans. Nothing definitive and it was pretty much determined that I had micro-metastatic disease and should start Lupron right away. So at this point the fear and hopelessness had set in and I went through months of anguish over my situation. I had officially in my mind written myself off. I started to research every site on the internet and read every bit of literature and somehow was able to always find the darker side of each one and fit it to my situation. Don’t get me wrong, much of it is my situation but you can’t read everything and always look at the bad. Lupron is one of those meds that if you read the side effects and symptoms from it you would be faint of heart. After my first shot I was plagued with the hot flashes and constant fatigue. My manhood as I knew was entirely gone and I realized that I was destined to go through “Manapause”. So this attitude went on for a while and some things such as the hot flashes became less frequent or I just started to get used to them. I was watching my blood work each time I went for the injection and it was down from the original 9.6 to .41 to .14 and the last reading was .03 which is pretty much undetectable. It was a short time after that when I had my epiphany. I am not and I refuse to be dying of cancer. First off compared to other types of cancer this has a very slow progression and we will have some time before it gets ugly. Manapause is not the worst thing once you get past the fact that you have really changed. The upside is we are living with the cancer and that the Lupron is just one stage of many and each will give you more time. Some people go decades on Lupron. I guess what I am trying to say is that you need to accept, read and educate yourself, and then deal with it the best you can. Every day is different going forward. Lastly, the one thing you will find at first is the fatigue and it is so important to get exercise. I would talk myself out of it and then when I finally started to do the treadmill and Bowflex I really did start to feel better. I wish you my best and be strong!!

  • I was diagnosed with similar conditions but a PSA of 30 at age 51 as well. I am now 67 and living a fulfilling life. Relax, you are going to the right place and they have MANY options of treatment today with more coming down the pike literally every month. Clearly hormone therapy should be in your arsenal along with whatever else they recommend. If you are not happy with Cleveland go to Duke Cancer Center they let you sit in one room with your data, a medical oncologist, a urologist (surgery) and a radiation oncologist ALL at once and you pick what sounds best for you. You have a long life ahead of you. 

  • I am on the antitestosterone therapy. The side effects I'm experiencing are hot flashes, cold sweats, restless sleep and maybe a couple more. However... the joy and happiness of time spent with my 5 grandkids, watching their faces when they see me... when they say "love you Pa"... to me its worth it. And my PSA numbers are finally below 1 !!! So give me my shots and blood tests.

  • I also started my cancer journey when I was 51. When I started Gleason was 7 and PSA was 22.  Now 64.  Had prostate removal surgery and when PSA came back had radiation.  That had no impact. PSA doubling every 3 months. Then did clinical trial of ADT and chemo (unique cycling) which reduced PSA to non-detectable for a long time. When it returned went back on Lupron, then after PSA rise did Xtandi and Provenge. PSA non-detectable for 3 years. Point is you can fight this for a long time.  Our bodies are unique but keep the faith. A lot more options now versus when I started.  Good luck!

  • Sorry to hear about you becoming a member of the club, no one wants to join. I was diagnosed recently, just after turning 49 (4 weeks ago). I had a bone scan which revealed I have 'activity' in 7 areas of my skeleton. Initially I was shocked and 'freaked out' but the more research I do, the less scared I become. I now see this as a challenging chronic condition (not a death sentence) and I also see it as a problem to solve, using the best of traditional and alternative therapies. Never ever give in to it and never give up. You have a lot to live for and you are the biggest factor in your own survival.

  • I was where you are now 24 years ago. Diagnosed with gleason score of 9 and PSA of 39 at age 47. Went  through surgery, then radiation but it came back. Casodex helped me for 5 years, then on to other hormonal ablation drugs. There is a lot more out there than there was 24 years ago. Don't panic.  

  • I want to thank all the guys on here who offered information and words of encouragement. I really appreciate it and am doing my best to try to gain a positive outlook. Much easier said than done. 

  • Good luck.

  • I had a similar experience with psa increase following surgery. My cancer seems to be aggressive perhaps a result of my exposure to Agent Orange. I was advised to take the 43 IMRT radiation and did so. In my case it did not work and psa was 1.1 and 1.8 on the second test. Thus, I began Lupron hormone therapy. This brought the psa reading down to near zero. Then there was a slight increase so I began Bicalutramide and 18 months later it is o.1. Radiation has had bad side effects for me with urinary and bowel issues. Not so bad in balance, but wish they could have been avoided. From the beginning, I have tried to learn as much about options and results and sought a fail soft process. Suggest you discuss with your Doctor about trying hormone therapy first and then use radiation as a fall back. Recognize that as time passes the hormone therapy side effects cause more noticeable changes to your physical being. I am 77 so some say "you would be losing muscle tone anyway." I have a ranch and like to work and walk: both are becoming increasing difficult and will likely become more so. This disease alters your life. However, you do not have to give in to it at every level. For the time being, I just change the way I do things. Yes, it takes more time and I do rest more often and some days take a 20 minute nap. I will not let this disease posses me. I may have to make adjustments for it in my life, but I am not ready to let it be my life at the moment. Interestingly, with a bit of patience and humor, you can enjoy each day and look forward to the next. Outside support helps, but I feel you must find the strength from within yourself. Wish you the joy in each day.

  • Try Cannibas

  • I've had RP and EBRT and although they lowered my PSA it never went below 2. Left to itself it doubles in about six weeks. Fortunately ADT (triptorelin) is very effective and I've been having a six-month shot every year to 18 months for the last five years. We let PSA rise to about 10 before having another injection. Towards the end of the effective extent of the injection I get lots of hot flashes and get rather tired and achy but then my body gets a rest and things return to normal. I find this a good compromise but of course it won't work for ever. Fortunately our understand of PCa is improving all the time and new effective treatments are coming along. Definitely no need to panic. Bon courage!

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