Terrified for my dad!

I am just learning about all this and I am finding it so confusing and terrifying. All I know Is that my dads PSA score was in the thousands and that he Is being fast tracked for a biopsy. There Isn’t a lot of info on levels in the thousands, but the one thing I did find on the NHS site was that it means it’s spread! I haven’t slept since finding out, feel like I am going crazy! And my dad sounds like he’s given up. Any advice or info Is gratefully received.

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  • I am so sorry about your Dad. We are all dealing with PCa here. But you can find a lot of information and hope on this site.

    I know for a fact there are a number of PCa patients on this site who had PSA levels in the thousands when first diagnosed. And they have found effective treatments. And they are living a long time.

    There are a lot of treatments now for Prostate Cancer that did not exist a decade ago. People are living longer. And there is a lot more in development. There is a lot of hope

    My advice is to first - don’t panic. Get all the facts so you, your Dad, and your doctor know what you are dealing with. Second, make sure your Dad is treated by an Oncologist that specializes in PCa. This is essential. Third, educate yourself. I I recommend reading Dr. Patric Walsh’s book, Guide to Surviving Prostate Cancer. It is the essential book for PCa patients trying to understand to understand the disease and the options for treating PCa at different stages. You can get it on Amazon (including an e-book for quicker reference.).

    When you get more information, post it on this site (PSA, Gleason Score from Prostate biopsy, info on metastasis, if any, etc.) and I know you will get a lot of very knowledgeable responses and treatment advice from other PCa patients.

    We are praying for you and your Dad. Don’t lose hope! 😊

  • Hi

    Thank you so much for your reply, means a lot, we are just so confused about this PSA test, we were expecting after reading up on it before that at worse it would be 10, we were totally shocked when he said it’s in its 1000s. So we just don’t understand how they can be thousands but also low?

  • Very sound and hopeful advice. Thank you JamesAtlanta…

  • Welcome to the group! Unfortunately everyone here knows that feeling when you or someone you love gets that call.

    Yes, with a PSA in the thousands your father needs followup. Definitely a biopsy and probably CT/bone scans. Please take the advice from JamesAtlanta and educate yourself. It is hard to do but please step back and breathe.

    Please know that PSA does not tell the whole story. In fact there are three current posts dealing with the fact that PSA is not a reliable tool. It does not tell how agressive the cancer is (if that is what he has). There are a lot of men here that also had PSAs in the thousands that were able to bring it rapidly down. Many of them have celebrated over a decade after diagnoses. On the other hand there are a lot of men here with low PSAs (including me) but have advanced cancer.

    Please know that even if it has spread there is still very good reasons to be optimistic. There have been some amazing new treatment options that just came out. For example, there is the Stampede trial (that I am on). A reference is listed below:

    nejm.org/doi/full/10.1056/N...

    Closely related is the Latitude trial. An overview is listed below:

    ascopost.com/News/55700

    These are just two new options that became available this year.

    Please know that everyone here is pulling for you and your family. I firmly believe that it is harder to be a caregiver than to be the one with cancer. Please make sure that you take care of yourself. I do not know anyone here that was not blindsided. Again, please take a moment to breathe, do your own research and post any questions you have on this sight. That includes questions to other caregivers on how they handle not just the physical aspects of cancer but the emotional aspects.

    Hugs to you and your family

  • Thankyou I feel so much more hopeful and so glad I joined this site :)

  • Be positive for him Don’t let him fall into negativity That’s not to anyone’s benifit. You’ll find real-time answers and info here that Drs will not give you. I thought I was a goner 21/2 yrs ago. I’m still here with no signs presently. That s not to say that it wasn’t without a lot of pain and suffering ,emotionally, and of course physically. If he receives treatments he will be stripped of his male hormones thus the emotions of menapause. Difficult to say the least. If you follow this site you can be informed quickly and give him that knowledge and hope.Thats huge. I fumbled through treatments . Not finding this site until recently. please stay in touch so that you can receive help here. Many of these guys and girls that have been through this can let you know what’s good or bad and what to expect .

  • It’s the best site I have come across lulu, I will make him more positive don’t you worry, he asked me not to go to the hospital but I did, I figured he couldn’t say a lot once I was there!

    Now I have permission so he’s turning a corner

  • On point as usual is our friend Dr. Who.

  • Cammie,

    Most likely he will have a fantastic response from initial treatment, I have known men with initial psa in the thousands who have done very well On treatment, How old is he? James and Dr. Who offer some great advice to follow up on. I will add in the thought that a more aggressive cancer produces less psa, often a very high one like that is not as aggressive , and is brought way down by initial treatment. We are all here for you and your Dad, Never give in.

    Dan

  • Hi think he’s 66, I feel so much more positive and have read these out to my dad and he Is starting to feel more positive also :)

  • I agree the PSA score may be scary but modern medical treatment seems to bring it down in most men. Your Dad is young for a guy with prostate cancer and has a bright future. Reassure him that the medical community is doing a lot of great things with Prostate Cancer and to take one day at a time.

    Blessings and Prayers.

  • It has really scared us especially seeing So many results in the single numbers

  • Hi Cammie, You've started by doing the right thing, asking for information. Especially from the guys on this site. You will also find the wives and daughters who respond have invaluable insights. From your mention of the NHS I imagine that like me you are in the UK. I have received unwavering care over four years and live with a PSA of 0.03. Began at 200 with 40+ bone Mets and wipeout of pelvic girdle lymph nodes. No Mets now.

    Where are you based and which hospital is your dad attending! I am 71. Best of luck. David

  • Hi David

    Thanks for replying, We are based in warwick so attending Warwick Hospital at the moment. The initial test for the PDA were lost, he had a brain scan also which came back that he had narrowed veins so was put on statins so it was only because he said well what about the blood test results that it was done again! But to be fair since then they seem to be on the ball! Wee are just now waiting for a call for the biopsy and scan.

    I am so glad I posted, I think if I hadn’t I would have had a break down by now! Thanks so much for all the support and insight it’s been invaluable!

    Where are you based and wishing you luck also

  • I live in Twickenham and main hospital (out if 7 I go to because of other complications) is Charing Cross Hospital. Is there a Maggie's at Warwick?

  • A maggies? What Is this?

  • Maggies provide support for people with cancer in the UK. See maggiescentres.org/our-cent...

    There is no need for an appointment just call in to speak to someone. They are very knowledgeable and offer great support. Hopefully there is a centre close to you. I visit the one in Manchester and they have been fantastic since my diagnosis just over a year ago. It's hard at first but once you get your head around your new reality it gets easier. There are lots of treatment options so it is not all doom and gloom

    All the best.

    JP

  • I rang them soon as I got your message, really helpful, although no centre Is near us as yet although they are planning one in the near future. Good news Is we can access the online service they provide. So thank you so much :)

  • You got the best reply, my Maggie's is at Charing Cross Hospital in London. Sorry I couldn't reply sooner Cammie but wife has brought me to the South coast with the dog for a brief holiday. Back to Doc tomorrow and Doc then hospital on Friday. No worries. David

  • Hope you have a lovely time David, hope all goes well at the hospital

  • Thanks Cammie, I don't worry about the hospital, nor will you and your dad after a while. For me the cancer is just something I live with. Now though I have old man's hips, no cartilage so bone rubbing on bone. David

  • Hi David, it’s an awful disease and you are all so brave and inspiring. Camilla

  • That’s very good .We’ve been where he’s at now . Not knowing fully what to expect. It’s brutal for everyone involved . Soon you will know Then probably take action quickly. No time to stand back and ponder. It is possible for your father to live many years after treatments. He has to want to fight and control his Pc. He has you ,That’s reason to fight. You both can find support here.

  • I did not know that about the high and low psa’s.. Makes sense , my Psa only went to only 18.I was non operable but pc tumors shut down my kidneys. That was aggressive, in my opinion.

  • i'm so sorry to hear of the diagnosis - but we are a great resource for what we have gone thru and maybe still going thru. He will prolly start with hormone therapy(ADT) to reduce the testosterone and prevent any uptake - Lupron shots and Casodex pills. This will deprive the cancer of it's main stimulant. He can prep for the possible side effects e.g.: hot flashes, mood swings, muscle loss and increased body fat by exercising and eating healthier (whole grains, lean protein, fruits/veggies - esp cooked tomatoes, broccoli. Avoid poultry and red meat). Fish twice a week.

    The current protocol is to start ADT with chemo and that has proven to enhance longevity. My PSA was 840 in 01/2015 with metastases to ureter lymph nodes. I had 15 chemos in 2015, did 30 months of hormone therapy, supplemented with Metformin(diabetes drug), Lipitor (reduce fats,cholesterol) from my MedOnc. I also am using Modified Citrus Pectin, Berberine, Ursolic acid, resveratrol, Pomegranate, and Vit D - I have done research and these have actions against prostate cancer growth.

    I fasted 2 days before chemo and still fast daily from 9pm to 1pm. I sip curry, black pepper tomato broth during the fast. I also have diet green tea and a cup of black coffee in the am.

    I'm now at 0.1 PSA and when I was first hit with the news, I was devastated, but my 1st grand child was being born a month after and I knew that I had so much to live for - my family (5 kids) and my dental patients

    This is the start of a journey and with our help here and your love and support - I'm sure that he can suppress the beast.

    There is so much research out there. Check out pcf.org/ or zerocancer.org/

    My best to you, your dad and your family

    Randy

  • Hi Dockam

    How inspirational, I have had such lovely supportive comments. I am so sorry you are all going through this.

    My dad Is a very healthy man, so he won’t find these changes difficult in regards to the diet changes. Still in shock, but you are all helping us so thank you

  • Randy Great reply, and great story, You are inspiring Me! Obviously you became very informed in a hurry. So many of the Men dxed nowadays and doing the aggressive treatment early with chemo are achieving low psa numbers like you did, that was just not the case ten years ago.Also looks like a good list of supplements, I am curious also about ursolic acid, is that Ursodiol and are you doing that as a liver protectant ?Also where did you hear about fasting during chemo, can you send me a link.

    Thanks, Dan

  • Hello, here are some links:

    scientificamerican.com/arti...

    sciencedaily.com/releases/2...

    I have looked thru a ton of articles and came up with the above supplements. Individual results may vary as the ads state!

    So, it is ursolic acid and I take it with resveratrol and tumeric.

    I had an initial nadir of 0.2 in 08/16. PSA then ticked up over a year to 0.5 and I went Vegan for a month and got it down to 0.4 and started those supplements and now been at 0.1 for the last 2 months.

    Fight on Randy

  • Thanks Randy

  • Hey Dan. Google fast and live .. Idid it during RT . Difficult but doable .I had urological issues also at the time.IE ; bilateral neauphrostimy tubes and a foley for over a yr. I went from 230 not much fat to 165 during RT .. I believe that weakened state weakened the bad cells and helped the RT eliminate the bad guys. That’s the premasis at least. Now I’m at 191.. besides losing most of my muscle mass I feel better at a lighter weight. My joints however are suffering .Just had bursitis in both hips with crazy pain trying to stand or walk. Now I’m informed I have DJD and osteo arthritis. Rapidly put upon me I feel by RT & ADT. I’m fortunate to be here. But as you already know there is no,dropping the fight against APC.

  • great post - I'm questioning Resveratrol

    I recently read a study on R that found it increased Testosterone and reduced estrogen. sorry I cant remember where (short term memory broken) and flying on Dex.

    I'm 3mths into Met-Pc just doing research on NHP's.

    if this is the case wouldn't it be counter productive for us and more appropriate for female tumors

    just learning

    miki

  • Hey, that Texas study showed that ursolic acid in combo with resveratrol or curcumin had the greatest action against the PCa cells. So, I just take both 😊. My testosterone has still been at 16 even tho my last Lupron shot was on 03/31/17 - I'm on a hormone holiday so I won't progress to castrate resistant and will restart ADT when PSA gets to maybe 4

    Randy

  • hi randy

    got diagnosed 3mths ago Adv.Lym,&bone aggressive

    on 4th of 6 rounds of ADT/Chemo already mutated psa climbing again. just got the news 2 days ago, feelin a sense of urgency and I've started using more alternatives in my diet (garlic,cay.cur,etc) . I'm thinkin of making some pure capsaicin and use it pronto while still on chemo. have u had any negative side effects or heard of any combining the 2

    thx

    M

  • Hey, I've thought about capsaicin and may try it down they road, but so far my supplement concoction seems to be working - I'm having another PSA/testosterone test on 10/30.

    I just read your post and I I know what you are feeling and going thru. The thing that I could add that I've done is fasting before the chemo for 2 days sipping homemade tomato, curry, black pepper broth. I still fast daily from 9pm to 1pm the next day

    Maybe ask for Metformin 500mg 2x/day:

    ncbi.nlm.nih.gov/pmc/articl...

    I was at PSA 0.7 and I sent my MedOnc studies and he said compelling evidence and wrote an Rx - I then was able to nadir in 08/16 at 0.2 at 7 months later.

    This study about Zytiga just came out: ascopost.com/News/55699

    I'm not on it now, but medOnc said that would be in the arsenal when my PSA ticks up.

    Try those supplements that I listed above.

    My best to you with upcoming Txs and keep us updated

    Randy

  • thx dock

  • Hi, I’m sorry about your fathers diagnosis.. I was the same way searching the internet asking questions looking for anyone with similar diagnosis and progression. Cammie2016 you have found an amazing site with such wonderful and supportive people. I have no answers for you but I’m sure in no time many will begin providing some insight. First take a deep breath and be grateful that it was found now. We are lucky that there are many treatments available. My father also immediately got depressed but we didn’t let it get to him and he chose to go on a huge vacation and then come back and start treatment. While on their vacation my sister and I flew to Europe and surprised him and my mom. It was amazing. Be as positive and supportive as you can. If your dad is the type that wants to know some Info about others with prostate cancer this is a good site to guide him to start talking to others. For My father - I’m the middle person, I read and educate myself and just guide him to do what I think is right (diet, exercise, supplements) etc. I am involved in every step including speaking with his oncologist, radiologist, primary physician, and seeking out all other options tests and activities. It’s a lot - but it’s all worth it. We love our father so much and we want the best. I wish your daddy well on this journey and to be strong. We are all here to support you!

  • Hi! I have definitely found the most amazing site with such amazing lovely kind people. It was so much of a shock it’s that word “cancer” and we were expecting at worst a 9 from the things we had read online. My dad is all I have, I am 41 and lost my mum and Nan just a couple of years ago, life was starting to feel good again then this, but I now feel more informed, although still confused, but also I feel more positive thanks to you and the other people who replied. Again thank you x

  • I’m 43, and my sister and I are very close to our parents. My dad is 77 but is physically like a 60 yo!! We were devastated because he had no symptoms.. after surgery he went into remission for 2 years. Now it’s back with a vengeance and in all of his lymph nodes all over his body more then 50 Mets. The only symptoms is tiredness and a little foggy from the medication. Just keep positive and keep us updated! Wish you papa will big hugs and stay strong!

  • So sorry to hear your dads diagnosis, sending you lots of positive thoughts!

  • You are awesome!

  • Not to worry, 1000's is just a number. With todays treatments his number will be in single digits within six months or so. Mine was 850 3 years ago and today they can't find my cancer. Your father has years to go, all he needs to do is hang in until the next prostate cancer wonder drug gains approval. Take a deep breath and begin the education process that comes with this pain in the rear affliction. Finally start planning your 2019 (not 2017 or 2018) holiday season with dear old dad, he will be there acting as the master of ceremonies. This is far from the end, it's the beginning of a long journey. Cheer up, it's not half as bad as it seems to be.

  • I love that “1000’s Is just a number” you are right it is and I will keep this in my mind in the weeks ahead, again I’m so happy that you are doing so well x

  • PSA at diagnosis is not a determining factor in overall survival according to research. PSA nadir and time to nadir are much more significant. PSA can go down really fast if it's responsive to androgen deprivation therapy. Mine went from 463 to 12 in one month, then down to 0.19 in 6 months. Good luck with treatments and try not to worry. Even with advanced prostate cancer, the treatment options are much better than they appear.

  • Hi Gregg, thanks for replying, I feel so much better being on this site, you are all amazing :)

  • Hi Cammie,

    I'm a little late jumping into this discussion. You have already received lots of good information and support.

    I wanted to let you know that my original PSA at diagnosis was 5,006 at age 65. That was 4 years ago. I had considerable pain and had LOTS of bone "mets" and involved lymph nodes, and I went straight to an oncologist for Androgen Deprivation Therapy (ADT). The main agent was •LUPRON DEPOT® (leuprolide acetate), a simple injection every three months. I also took some IV Zometa (zoledronic acid). My prostate cancer was very hormone sensitive, and in short order my pain melted away, and within 4 months my PSA was down to 2.4, and within 13 months my PSA was down to 1.0. After about a year, my CT and Bone Scans showed at least a 50% improvement, overall, compared to the "Christmas Tree" appearances of my initial scans.

    (The newer protocols are now often recommending ADT + 6 rounds of Early Chemo (Docetaxel) for even better responses, and long term overall survivals.)

    My PSA remained below 5 for about two years before "resistance" began. I did a couple of more different types of treatments during year 3. During the past year, since adding oral Xtandi (Enzalutamide), my PSA is now back down again from 95 to 1.4. I will ride this train for as long as I can, with the help and advice of the best doctors and support groups I can find.

    I am 69 now, and feeling some effects of having had a Testosterone level drop from 908 down to below 20 for the past 4 years, but I am happy to be alive and otherwise serious symptom free for all this time.

    Life is Good. I may not be totally Cured, but I can certainly always be Healed, and find evolving Hope for all my days, one day at a time.

    And, needless to say, the Love and Support my dear wife and I share has been of immeasurable help as we live this part of our lives together.

    Charles

  • Hi Charles

    You are truly inspirational, thank you so much for replying, you have given me so much hope and the fear I felt Is fading with every reply I get. Wishing you many more happy healthy years :)

  • What a wonderful daughter you are.Just show him love. Don’t let him give up. You must take care of yourself so that he can depend on your strength. It is frightening, but you can be his advocate and help him incredibly just by supporting him .My dad had his prostate out at age 72. It was a successful surgery but he died a few years later at home alone from what we think was an asthma attack. No autopsy so we aren’t quite sure what happened .That was 20 yrs ago. Because I had Stage #4 APC and I’ve been through treatments I Now empathize with what my pop went through .I was unable to see him while he was going thru it . I had no idea what APC entailed. I feel bad because I wasn’t there to help or really personally consol him ..If you can see and or talk to him much , just give him that unconditional love.That is the best thing in the world. Just knowing how much you love him can help tremendously. Thank god he has you.

  • Hi lulu

    Thank you for replying, so sorry to hear your story, your advice means a lot, take care of yourself and wishing you luck and sending you positive thoughts

  • He can do what is nessasary to survive. That’s what it boils down to . I’m not a huge John Wayne fan but I did see a quote of his “ A mans gotta do what a man gotta do ..That’s it for us with PC . We gotta deal with it It’s not pretty or easy . I ve had incredible moments of weakness and hopelessness. It happens You can’t get caught there however because you need everything in order to fight. Seeing your love for your dad is a great thing. T Be strong for him and you can see him through He’s far from alone. Thank you!!!!

  • You are all amazing :)

  • I know it feels like a weight and it is a heavy load for your family to bear; however, I encourage you to think of it as a magnet, pulling your family closer and allowing you not to dread tomorrow, but embrace the now.

  • You are right feel closer to them already

  • A PSA in the thousands is scary, but you have to understand PC can be tricky. For some patients a small amount of cancer cells can produce a lot of the prostate antigen and in other patients a large number of cancer cells can produce a small amount prostate antigen. Focus on the changes. Also wait for the results of bone and CT scans.

    There are a lot of treatments out there so don't panic yet.

  • Hi, thank you for your reply, we have found out MRI scan is Thursday so at least things are moving fast, feel sick thinking about the results but all your stories have inspired me and gave us hope

  • to Cammie2016,

    You've gotten great info so far... the only thing I can add is to laugh...

    Laughter is the best medicine...

    Good Luck and Good Health to you and Your Dad and to all his relatives and friends.

    j-o-h-n Monday 10/16/2017 4:40 PM EST

    Doctor: Well, we better discuss treatment now for your prostate cancer. I recommend hormone therapy.

    Man: Are there any side-effects?

    Doctor: A few. You will have a loss of potency. You might get some hot flashes. And when lost, you will have an inexplicable urge to ask for directions.

  • You are so right! I got him to slightly smile today! Good luck to you and yours too John

  • He will no doubt be administered ADT medication if he hasn't already. Have him ask his doctor about radiation treatment to prevent gynecomastia. It is a side effect of ADT that could be prevented but few doctors seem concerned enough to pursue it. I wish I had known about this preventive option.

  • Hi, he hasn’t been given anything at all just some antibiotics that he has to take when he gets a call about the biopsy.

    Thank you so much for the advice I will add this to my notes that I’m just writing now from all the comments.

  • While a high PSA certainly points to a metastatic disease it also points to the fact its highly treatable. A low or undetectable PSA with a bulky disease points to cancer that is small cell or has small cell attributes and is the most lethal. This thread remind me of the day I found out my father had PCa and the how helpless and hopeless you can feel. I can say that for me those were the worst days of this experience. Almost two years away from this I can say that its amazing to experience how we as humans can learn to adapt and cope with almost anything. Life is more measured now but also richer, the small things having much more meaning. Be Strong, Never Give Up!

  • Hi

    Thank you for replying, it is a horrible feeling but all these comments are helping and giving us hope.

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