Full Diagnosis :-(

I wrote s couple of weeks ago about my husband having a PSA of 6006.

We now have the full diagnosis :

PSA originally 6006 then up to 6700 week later.

Gleason score 9 (4+5)

Spread to lymph nodes, ribs, spine and pelvis.

Hormone treatment to continue and they have suggested chemo to start in about 4 weeks.

Obviously it is a horrible prognosis and not sure what else to say but any thoughts very welcome. x

34 Replies

  • My love to you both.

  • My prayers and sending out good thoughts that treatment will knock it DOWN DOWN DOWN! Hugs for both of you.

  • Breathe deep and try to remain positive. As of two weeks ago my PSA was 3600 after 20 cycles of chemo, but we are waiting for fresh scans which I will have on Friday. I was diagnosed in February 2013 with initial PSA of 840. Never managed to get PSA below 73 since. However, I continue to feel well, am pain free, and living a full life between treatments which I have tolerated remarkably well. I'm currently in a research study and sense that some of the lymph tumors are finally shrinking.

    Hoping for positive outcomes for your husband.

  • That's awesome. What study are you participating in? Ty for the positive energy and hope xoxo congrats on your continued healing

  • I'm in a study at University of Washings using rspamycin in conjunction with docetaxel and carboplatin. scans today, so I'll know more next week.

    Sending healthy thoughts your way.

  • Yes, you've been given a difficult road to travel, but at least the docs have put your husband on the correct path of treatment. Most (if not all) oncologists will say that this level of disease is not curable but it is treatable. Remain as positive as you possibly can be and as active as you can be, and that alone will serve you both well. My sincere best wishes for an excellent response to treatment.

  • hormone therapy and chemo has worked for me for 11 years so do not give up

  • Wow. What stage were you diagnosed in? That's amazing and my greatest hope for my dad.

  • Diagnosed 2005 stage 4 glèeson 4+4 psa 24 metastatic right hip so one can have a long survival

  • Best of luck, never, ever give up.

  • Good morning Sallyyy, did you both receive a prognosis? My Oncologist was very firm 20 months ago and told me bluntly I had incurable metastatic PCa the first time I met her. Like your husband spread was lymph nodes pelvic girdle, both hips, spine, back ribs connecting to spine, chest and both scapulae. So Zoladex implant specified and still renewed every 3 months. PSA down from 200 to 2.0 but after 10 months rose to 13.5 so Docetaxel chemo used at same time as Zoladex for 10 cycles. During cycle 2 dropped PSA to average of 2.0. Then 4 months with only Zoladex to let body recover. PSA rose in month 5 to 25.5 and I started Abiraterone. After 4 weeks 0.58. Then in 2 weeks 0.31. 2 more weeks 0.18. Next check in 5 days. I didn't feel changes. BUT at start of Abi had bones scan. Most lesions gone from all bones. No new locations after 2 years. I pray your husband finds a similar response to his treatments.

    What you didn't mention is important. My latest check show my lungs, liver, kidneys and essential heart regions are still all clear. May I assume the same is for your husband? That would be very good.

    Off to take my medz now but both of you keep cheerful, it helps. As does sharing thoughts and advice.


  • Thank you all so much for the messages x

    The Dr said that organs clear from the scans they have done.

  • Sallyyy that for me is the best news! It put the cherry on the top of my own PCa latest and positive as I have lived my life to date gave me added impetus. It also means your husband's body and organs are more able to face his forthcoming treatments. To finish for now none of my medz including the chemo has really bothered me. Don't let it worry your husband. There are millions of men like me who have ridden the initial storms and are still enjoying the sunshine of our families and friends. xx David

  • Sending you both a big hug, hopefully the chemo will give the PCa a good ko punch.

    Best wishes Jackie

  • So sorry but keep the faith. Hopefully the chemo will reduce the PSA. Also, please think about clinical trials.

  • Sally,

    It is a difficult diagnosis, so sorry.

    The last 2 years have seen a major change in how best to treat newly diagnosed aggressive disease which is the description of your husband. As suggested by your doc, chemotherapy along with hormone therapy now is his best course. Usually this protocol utilizes 6 infusions, but of course the doc can change this depending. What I don't understand is why wait 4 weeks to start the chemotherapy? It should be started immediately.

    If you are interested you should read some of my posts about early chemotherapy on the advanced prostate cancer blog (www.advancedprostatecancer.net):





  • Thank you Joel

    The consultant said that they like to start chemo after giving hormone treatment to 'bed' in but no later than 12 weeks after the start of hormone treatment. (This is at a clinic which is part of the Royal Marsden Clinic in the UK.)

    I do have a query re chemo. My husband has always had a low white blood count (quite common in Afro Caribbean community apparently ?) This has never caused him any problems and never been a concern to Drs but it is only 3.6 currently when the normal range is 4-11 so I am worried that they will not let chemo go ahead. We spoke to allocated nurse today but she said we need to discuss with Dr when we see him in 2 weeks.

    Sorry also meant to add that nurse confirmed diagnosis written down is Tb3 N1 M1

  • Perhaps onc is also waiting for a increase in WBC due to potential side effect of neutropenia in docetaxel and to determine response to ADT. We waited 2 months because bone marrow metastases lowered CBC levels and also because an initial two week course of flutamide raised his LFTs significantly, which can be a common side effect.

  • Thank you so much for the added info rd

    (The clinic is at Kingston Hospital)

  • Hi Sallyyy

    So glad you joined us on this site, there's lots of us on here who have been through what you're going through. There's new treatments becoming available all the time - Metformin has just been added to trials here in the U.K.

    Best wishes to your dear husband, he must be devastated at the moment.


  • Thank you Tommy

    Actually I think the Metformin trial might be one that could be a possibility for my husband. It was mentioned at the hospital.

  • I am just into this study: clinicaltrials.gov/ct2/show...

    It is at Johns Hopkins, and I do say "watch what happens". It definitely is a good idea. The only question is how good an effect will it have.

    It is basically like the leukapheresis that is done when they harvest stem cells from your bones, but if you have metastases, lots of those cancer cells come out as well, reducing the "tumor burden". No idea when any preliminary results will be out, but it is open for enrollment. And there will be follow-on phases. So it might be good to wait.

    And there seem to be many other hot things there as well. For another - tying to prevent cancer cells from coming out of the prostate to circulate in the blood to start with. So if you can get your mets cleared up, they hope to prevent further ones. (ideally of course, but that's the hope.)

    The place is fantastic, although it *was* Holloween. I saw Wonder Woman in the cafeteria!

  • Martin,

    Did you also do chemo. I know you seemed to be a proponent of the early chemo study so I'm wondering if you did that and in addition now continue this study. Best of luck ....no not luck. ..I hope it's the best fit scientifically to help reduce the Mets and prevent more xo

  • I did the standard at the time (August 2016) which was ADT plus docetaxel (after the CHAARTED study). The chemo ended at the end of 2015. and the ADT has continued as an Eligard "depot" (a subcutaneous injection good for multiple months).

    I just got back from the screening meeting for this trial NCT02478125, and it turns out (unexpected and a little confusing) that I am too healthy for this trial: they could not locate any bone mets. (!) ??????????

    But it continues to seem like a perfect treatment - almost an "off label" use of something they do all the time, just never before to cancer patients, at least not for this purpose - of "harvesting" cancer cells.

    This studay is in the very very early days, so it would have been a one-day thing at most. The next step is a week long treatment, with a four day run-up, and four days of "mobilizataion".

  • I meant August 2015, not 2016.

  • No mets! Though I'm sorry you can't participate I cheer for your too healthy diagnosis. The study seems promising. My dad starts chemo Monday. I feared it would keep him out of future studies but it does see most studies are with men.who have already done chemo. I was just hoping he could get the extra benefit

  • Radiation to pelvis, already, makes my.dad inegligible for that study and he is not considered cr. I just don't understand why scientists are starting drugs at the castrate resistant level and not earlier where the possibility of wiping it out seems stronger. Are there studies you know of that do not require castrate resistance? Also since you are so well versed, may I ask your opinion on immunotherapy. Y.fad was told he's too far advanced for it but I don't see why it can't be tried after chemo as adjunctive treatment. Any tips on helping dad through chemo?

  • many require castrate resistance, and i have also seen require progressed after abiraterone! its a combination of the population that the dr is interested in (is targeting he hopes) and what the review board will allow - i am guessing. i will look tomorrow, but i have been focused on my condition, rather than the general case, immunotherapy is still in the early stages and seems weak at this point. effects in the best case are hard to see, although pretty sure are real and present. ie - dont affect the psa. ???

  • I hate to just make up stuff to seem smart.

    One thing I feel confident of is "imaging". If you have some question as to what is going on (where exactly the cancer is - and so how to approach it), Dr Kwon at the Mayo Clinic is an inspiring and motivated doctor. Mayo also has very good imaging - C11 choline, and Mayo Arizona has C11 Acetate. (not sure of the difference) These allow you to see small spots of cancer. In any case, if you think better imaging would be helpful, then call them (to talk to his nurse - if you can find a study that he is involved in, you can often get a phone number including of one of his assistants - who could guide you as to what help they might give you and how to ask for it. The trial nurses want both to get people enrolled in studies and want to make sure that the study is suitable for the patient. At least that is what I found with Carolyn and the study at Johns Hopkins.)

  • Ex had PSA of 2740 at diagnosis last year and hundreds of bone and lymph node mets. Your goal now is a low PSA nadir but not too quickly. Several studies indicate a PSA nadir of under 1 is ideal and a slower time to nadir have better outcomes. Ex's PSA nadir was 12 after 6 months and has risen ever since and indeed treatments have not worked for very long in his case (he immediately started lupron and docetaxel).

    He also had bone marrow metastases at diagnosis which lowered his WBC, hemoglobin and hematocrit and platelets to dangerously low levels (pancytopenia) and his first s/s of cancer was hematuria, bleeding gums and epistaxis. How is your husband's CBC lab work other than WBC?

  • Thank you for the reply and the detail about your ex. I am sorry about his diagnosis.

    We don't know anymore detail about my husbands blood results but he is having another test next week so will make sure that we get all of the detail.

  • Hi. - Do you know anymore about the info you posted re slower move to nadir PSA having a better outcome? Thank you

  • ncbi.nlm.nih.gov/pmc/articl...


    Above are links to two articles. Other factors like Gleason score and baseline PSA can influence progression and overall survival. However, every man is different. I know a man with an initial PSA of around 4000, bone and lung Mets and a quick time to nadir. His PSA remains under 1 on ADT3 (Zytiga) and he was diagnosed 10 years ago.

    I did a massive amount of research (I'm a nurse researcher by trade and education) to find predictors of survival and treatments. This only caused me more stress due to what I read. I sometimes feel ambivalent about posting details of ex's cancer because it can be discouraging, but his cancer is unusually aggressive and resistant to treatment and was caught very late. My recommendation is find a great med onc, follow his/her advice, utilize support groups and focus on your situation.

  • Thank you - that is such a useful reply x

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