Looking for hope and help - PSA over 6000

Hello

My husband has had a shock diagnosis of advanced PCa after a routine rectal exam for an unrelated condition revealed a 'hard' prostate. He was given a PSA test which came back as 6006. The consultant has said he has inoperable PCa which will have spread widely.

I have posted this on a couple of forums and people have been very helpful but finding it very hard to find more information about such high PSA results (I assume because it is so shockingly high.)

He is about to start on immediate hormone treatment and at the same time is having MRIs / bone scans etc. we have been told that these are just to establish the extent of the spread (rather than to check if there is any spread at all.)

We realise that this will be life limiting but would appreciate any thoughts / advice and if anyone can give any hope.

Thank you.

34 Replies

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  • A friend I met at the cancer support group had a very high PSA count (about 4,000) at the start of his journey last year and was given immediate chemotherapy as well as hormone therapy. Using Docetaxel which, at the moment is doing him good. I don't know if this would be applicable in your husband's case and I hope someone will come along soon with more knowledge.

  • I like the ADT/chemo if the doc will go for it. That's not typical in the US, but studies are positive.

    Try not to focus on "life limiting" right now. I'm 9.5 years into this with metastatic castrate resistant disease (now age 53), but treatment lets me do lots of things I want to do.

    Please let us know how it goes.

    Yost.

  • Thank you for taking the time to reply.

    Would someone mind explaining what ADT is please. We are very early days and I am trying to get across everything

  • Wow, 9.5 years on stage 4 or was it caught earlier. Thank you for that support and reassurance and may you continue to do everything you wish and enjoy it, despite treatment.

  • I'm 3 yrs on the same path at age 58. I've found that my feelings of "why bother" or "death is just around the corner" come in cycles. I'm currently in the midst of focusing on the death and dying part and can;t seem to shake it this time. I can put on the smiley face but just under the surface or when I'm alone it is there. Wondering if anyone has advice on how to shake this and keep me focused on the quality of life instead of the glass is half empty.

    thanks

  • Why don't you put this in a post, so it's not overlooked. It's a very good question

  • I fight it with "laughter as a hobby".... Good Luck and KEEP SMILING!

    j-o-h-n Friday, 10/14/2016 @6:18PM DST

  • Please ignore my ADT question - I've just realised that it is hormone treatment.

  • It's an anti hormone treatment, depriving the body of androgen that feed the cancer. In women the same drug would put you in men's pause and I've done that treatment. What I'm seeing with my dad is symptoms are similar, hot flashes, exhaustion, not being able to sleep, night sweats. You can think of it as a sort of male menapause. Hope that helps a little. I did lupin fir endometriosis for 6 months so I admire these men so much because it is life altering. My dad is on week 10 and he's still working. His major issue is not sleeping.

  • Try lavender oil (a drop on pillow). More ideas on our website, nonprofit Annie Appleseed Project.

  • You will hear words like "treatable but not cureable" but i encourage you to spend time on this site and read all of the incredible stories. The fact is, no one can tell you for certain one way or the other. It's to everyone's advantage to buy as much time as they can with the current treatment options that are out there, knowing full well that in 3 or 5 years there are going to be even more treatments available. I found some comfort in a Youtube presentation by Dr. Eugene Kwon, who has dealt with many advanced cases (https://www.youtube.com/watch?v=NkqizmvqJPo). Take a look. The important thing is to know there are lots of us on here in similar circumstances. There are treatments, and I encourage you to stay positive.

  • The chances are good the psa will come way down with hormone therapy, I think the current standard of care would be to include 6 rounds of docetaxol for increased survival. I hove known other men on this and other list who have done very well after a psa in the thousands,remember you are not alone

    Dan

  • Thank you for your positive messages. I will show them to my husband.

  • My good thoughts, good wishes and prayers for your husband. Please take good care of YOU while you help to research and care for him. You will need to do this. Your husband may be well for many many years ;)

    Most sincere,

    Jackie

  • I had an 840 PSA in 01/15. Started ADT and taxotere. I did 15 chemos and now I'm at 0.3 - keep on fightin

  • That's awesome..keep smiling!

  • While the PSA is extremely high, it s just a number. My oncologist places more emphasis on how I feel and what the scans show. My PSA remains very high, currently about 3000, but I am pain free and have plenty of energy. I have been on Lupron for 2 years and have had 19 cycles of chemo so far. Earlier had had a nearly a year on Zytiga and a few months on Xtandi. Eventually the cancer continued to progress, but slowly, so I have managed excellent quality of life. I know my experience is atypical, but I want to encourage you to stay positive and active. I have also found qigong and tai chi to be helpful.

    Good luck on your journey.

  • Without in any way minimising the value of this forum, can I please urge you to visit the Prostate Cancer sub forum on the HealingWell web site. It is by far the best forum I have visited and has provided me with a great deal of valuable information.

    There are many very experienced patients and advocates there and they provide very valuable support and advice.

    Chas

  • Hi Sallyy, a shock diagnosis like this is a difficult thing to get to grips with but this forum is full of lovely people who are here to help us find out all about treatments available.

    Are you in the USA or in the UK like us. Treatment options seem to differ depending where you live.

    Take care of yourself and let your family help you both as you start this journey.

    Best wishes, Jackie.

  • Thank you very much for the messages. I have read them all.

    I should have said - we are in the UK.

  • I feel your pain. My father got the same diagnosis in July and all I've done since is research. First have hope some respond for long periods on adt and be grateful they started it immediately they waited 2 months with my dad and it should have been immeduate. I'm new on this journey, and I go in and out of shock, as my dad only just turned 64. However, that's say what we know for sure. It is life altering, and yes could be life limiting, but it's not an established fact for your husband and his specific chemistry and cancer. I was stuck in that mindset thinking this is the beginning of the end, but I have to rip myself out of that darkness. Research on pca is abundant right now and there are therapies that may, or let's say WILL,work and the hope of everyone here is that with new treatments your joy with your husband will continue longer than you think. Choose your words wisely and think of the healing being done right now by the adt. My fear makes me say things like when he gets too sick to....etc, and I realized I had to be logical ,sensible, informed but more r Han that I have to get in touch with faith and pick my words to represent healing not doom. Our energy will transmit to your hubby, and I pray for everyone on here and I just wanted to extend a hug and let you cry on my shoulder. My dad is everything to me, truly my best friend, and I do know it's different as a wife,but still we are all in this together . If you want holistic complementary help you can talk to my friend who was given 3 weeks to live and is now 5 years cancer free. I'm not saying you should tell your love to go all natyral. I'm suggesting if he's open to it, which my dad is not, that diet and suplements can help make the treatments easier on him and live a more fulfilling and possibly longer life. I'll send you her email of you want it, but as for the psa, number, it's not just the number that matters, it's doubling time and other factors I believe, but the courageous men on here will tell you more than I can. For now just know I empathize with you, cry the same tears,and I do believe knowledge and faith as a caregiver are the keys to making sure our loved ones have a high quality of life. Xoxo

  • I would be very interested to hear about food / natural remedies that people have found helpful - even if it's just with side effects. Thank you.

  • I can email you a list of what can and cannot be taken while in chemo and different supplements for side effects. Look up Angel Howerton. You can tell her you met me here. I'm Erica from new Jersey. She's a beacon of hope and support to so many I always tell her I just don't know how she does it. Also, sugar in all its forms has been proven to feed cancer so any diet would be eliminating sugar . One guy suggested the ketogenic diet to me, and I do believe in the theory. You need some healing too because this shock is overwhelming and I know I fell hard into depression and cried my eyes out and got myself mire sick, so think of it as healing together, not just him if I was lucky enough to have a gusband, that's what I would do. So first be grateful that you have your soul mate and together I'm sure you've overcome obstacles and thus is an unexpected turn in the road. Heal together.

  • How about Modified Citrus Pectin, the supplement shown to kill metastaic prostate cancer cells? I founded nonprofit Annie Appleseed Project to gather and spread this info. Fish oil, probiotics, lots of (organic whenever possible) fresh fruits/veggies. Avoid sugar and deep-fried including chips. We have lots more info.

  • This is a copy of my Profile entry, which I originally posted about 5 months ago. Just one thing to add. Many if not most consultants do not put nearly as much emphasis on PSA as patients (myself included) do. White blood counts and quality haemoglobin levels are really important, so you might like to ask your husband's oncologist about this.

    ORIGINAL PROFILE:

    I'm Niall and am now almost 67 and was diagnosed in Oct 2013, PSA 620 and out of 12 cores in my biopsy, 10 were normal and a Gleason 3+4 in one and 4+4 in the other. Widespread metastases in all my vertebrae and ribs, a little at the top of my right femur and one in my skull. No organ or visceral involvement. Have been on combined Zoladex and Abiraterone more or less since the beginning and a bone scan 7 months ago revealed a reduction of maybe 40 to 60% metasteses. At that stage my PSA which had gone down to 0.1 had risen to 3.6 and I have just completed a 6 month course of Radium 223 infusions. Today my PSA was 2.9.

    I eat lots of fruit and veg, take Cod liver oil daily together with Pomi-t, Ginger root extract, Brocco max, Garlic tabs, CBD oil and pomegranate juice. Lots of tomato products and cruciferous veg. I eat white fish, tinned salmon, ( I don't like fresh salmon), chicken breast occasionally and red meat only about once or twice a year.

    I exercise by jogging/walking/gardening to try and do 16 to 24k daily.

    I feel really well and fit and can do absolutely everything I want, perhaps I get a little tired in the evenings, but life is excellent.

    For those of you recently diagnosed take hope. It is certainly devastating and naturally myself and my wife had plenty of tears, but life can go on pretty much as before and remember the pace of scientific and medical discovery regarding this pernicious disease is gathering pace so whatever you do DO NOT DESPAIR!

    Niall

    Update: Regular exercise is REALLY important. My PSA last Friday was 5.5. Turmeric (cooked) is likely to be helpful as well as cooked (never tinned) tomatoes. Meatless Bolognese sauce, Fried tomatoes etc. No Dairy.

  • Yes 6000 is a high number, but don't be too put off. Most likely the ADT treatment will cause the PSA to drop line a hockey stick (exponentially), and the docetaxel will at the same time kill some of the ADT-resistant cells. Take advantage of this initial treatment period to get up to speed on the vocabulary, the current second phase treatment options, and the great ideas that are being persued in clinical trials. There are some very cool people working on this disease.

  • one thing that is simple and no downside is find out you have a BRCA mutation. Chance is about 10-15% and if yes, there is a targeted treatment for that set of C cells.

  • i would like to hear more abut BRCA

  • wikipedia is always a good place to start

    en.wikipedia.org/wiki/BRCA_...

  • thanks for the info.

  • I am on Lupron which was controlling the psa for 6 years. Aslo 43 weeks radiation and then cryo in that order every time psa rised. Last check on Lupron befor see a med onc was 3.6 a rise of 2 in 4 months. within 2 months y psa was over 2000 and was started on taxetere right away to help with quality of life. My life expence by 3 doctors was weeks at the time. After 6 rounds of chemo and still being on Lupron psa had dropped to 1.8. Was then put on xtandi rough side affects psa was last tested at 0.43 after 1 month. The chemo was a breeze after the first round. I also gain 35 pounds during the chemo. Lots of restrictions. So hang in there and make sure you have a medical Oncologist.

  • The above 28 replies you have received in deed shows how the members of our community empathize with you and you are not alone on two counts. One - There are many cases with high PSA at the time of diagnosis. Two - All of us are with you to support in managing your husband's case in the best possible manner with the knowledge and experience we have. Without repeating the valuable things which others have told you I would like to throw some light on the most "shocking" part of your case : The initial PSA at the time of diagnosis being 6000ng/ml!

    This alone is not sufficient to write a death warrant. Some doctors may say the survival may be 2 years or so. Prostate cancer is not a disease of the physical organism. It is a genetic malfunction at the cellular level and nobody can accurately predict how an individual would respond to various treatment strategies. Remain positive throughout the battle. You have been given the correct initial treatment with ADT and I hope the correct treatment regimens will follow if you have selected a good medical oncologist. Good oncologist means one who is an expert in all of the new drugs and approaches of treatment and also has the expertise in the latest breakthroughs in the medical management of advanced prostate cancer.

    To get over the shock of your husband's unusually high PSA in thousands at the time of diagnosis, I wish to give you this classic case from my collection. It runs to almost 10 pages with all treatments etc. etc. but I will mention only a selected few points.

    Roy White and Irene Live in Australia. He was 72 when he was diagnosed in July 2008. His initial PSA was 7000ng/ml, his Gleason Score was 10, and he was staged T4 ( You will learn some of this jargon very soon ).

    His initial treatment was Lupron ( ADT injection ) and Casodex ( anti androgen tablets ). Within 6 months his PSA fell to 38.0ng/ml. In 2009 his PSA readings were 6.0ng/ml and 4.0ng/ml. In 2010 PSA started to rise - 9.4, 52.0, 72.0. CT and bone scans indicated bone metastases ( very much less than before ). Zometa ( bisphosphonate for bone health ) was introduced. In 2011 PSA fluctuated in the range 140 to 260. In 2012 the increases took a dramatic turn - 7400, 6800 and 5500ng/ml. In 2013 when he was about to enter a chemo trial he had a heart attack and he was kept away from any cancer treatment for 6 months. At the end of this 6 months period his PSA rose to a record 15,000ng/ml! ( So Sally, what is 6000? ). Immediately he was started on chemotherapy and after 8 treatment rounds his PSA dropped to 1,040ng/ml. In the subsequent years his PSA fluctuated in the thousands range but brought down from time to time to 3 digits. Currently he is being treated with Lupron, Zytiga ( Abireteron ) and Zometa.

    He was diagnosed in 2008 with a initial PSA of 7000ng/ml at the age of 72 with the worst pathological features but he is very much alive today being 80 years old and active. I quote below his latest update in July 2016, last paragraph in his own words.

    "I am still taking the Zytiga tablets and every month get my infusion of Zometa and every 4 months have a Lupron injection. My PSA has slowly dropped down to 400ng/ml and I am feeling well, as I have been for a long time.I can once again put an hour or two into my garden with a fairly big house. When I look back at the time my PSA reached 15000ng/ml, I fully believe that the man upstairs is looking after me . Always think positive.

    God Bless you! Roy"

    I have the same wish for Sally.

    Sisira

  • We have had some more difficult news. The repeat of the PSA test showed an increase of 700 up to 6700 in a week. I am finding it very difficult to cope with this as it obviously indicates very aggressive growth.

    Does anyone know if there is still a chance that the hormone treatment could reduce the PSA or is that unlikely ?

  • Just to add - he has just had the biopsy and they only took 4 cores to grade the cancer.

    I'm assuming this is because the MRI showed cancer all over the prostate so there was no point doing any more :-(

    I was going to ask if anyone else has had only a 4 core biopsy but I feel that I am increasingly clutching at straws.

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