Hello

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My husband 51 has been told he has prostate cancer today but got to wait another week for biopsy as they didnt have space today!! Hes been ill for about a month- sleepy, achy and in pain. Hes never ill. Theyve said its not spread to his lymph nodes but im sure they said it had gone up beyond the mri imaging they had taken. Can it be in your bones and not lymph nodes?  Anyway we will read all your stories and thank you for posting them !! As you will all know its a bit of a shock!! X

  • Hi RR, sorry to hear 

    PSa could give a rough idea if it has spread, the higher it is the more likely.it has spread. If it's  still in single figures or teens then it's unlikely, possible but hopefully not.

    Reading a copy of the MRI report could give further clues.

    Biopsy will tell all so hopefully that will be done next week

    Good luck

    Steve

  • Hi Ruby

    Sorry about what’s going on, it must be a great shock to both of you, you asked can you have it in your bones, not lymph nodes, I have it in my bones and just one or two of my lymph nodes, which disappeared after treatment. 
    What medication is he on ? Some people if it’s hormone therapy do suffer from what you’ve said. Waiting is a terrible thing, you want to know, then you want to know what treatment is forthcoming. 
    Remember PC is very slow growing he may be given options once all the tests are done and they map out a plan. Their very good people and have his welfare top priority he will be in good hands.

    I say this many times but being positive is such a plus. It’s hard for both of you, just be there for each other, when you see the oncologist have plenty of questions, if there’s a Maggies centre near you, their such a good team and will answer any questions you have apart from a nice cuppa.

    Stay safe

    Joe

  • It is a shock, I'm the same age. Try to stay positive ask lots of questions and do research. Best of luck and keep us updated.

  • hi Ruby, sorry to hear about the diagnosis - it is difficult to get your head around it. I am 50 years old and was diagnosed a month ago with  Gleason 5+4=9 with no lymph node spread but with bone mets (rib and pelvis). My PSA was 16 so the bone mets were an unwelcome surprise. The biopsy will identify if there is cancer in the prostate and they will Gleason grade the tumour. In order to identify bone mets they will need a bone scan - which one depends on hospitals etc but the latest is a PSMA PET CT scan which is very reliable at identifying prostate cancer and spread. I am fairly new to this but I can try and offer my own experiences if it helps. I am currently in 3 monthly prostap HT injections and currently mid chemo on docetaxel with various steroids.

  • Hi andrey 

    i am in similar situation to yours at 49 with psa at 50 then chemo and done and done Rt as well . Psa went up a bit so now on Abiraterone tabs . Did the chemo bring your psa down ? From 16 . What’s psa now ? Thanks 

  • Hi Mcjc,

    The hormones took the PSA down to 10.8 and my blood test from Monday for my chemo today shows the PSA at 2.2 so pretty happy with that. What is your PSA  now if I can ask?

  • That’s great so 2.2 after 3 cycles of chemo right ? 
    mine was 50.2 at start then hormones halved it to bout 25.3 . They chemo started went down to as low as 4.1 but then up again to 6. So on Abiraterone now 

    any radiotherapy planned for u ? After chemo ? 

  • Sorry my answer was unclear. My PSA had already got down to 10.8 after a month on hormones but before the first chemo. It is 2.2 after the first cycle of chemo and I had the second cycle today so hopefully the trend will continue. I was a bit surprised as I was warned that it could go up within the chemo cycle but that could still happen. The plan is that after the chemo but not immediately after I will probably have another psma pet ct scan to see how the bone mets are looking. If all looks in order I will have RT to the bone mets and the prostate (hopefully) to try and eradicate as much volume as possible. I have done a bit of research and there seems to be evidence of material abscopal effect in systemic anti tumour response to RT being given along with ADT. How are you finding the abiraterone?

  • Is it ? I didn’t realise . Wud b good if you can share that material research paper 

    Abiraterone is ok Bcos you got to take with steroids so it’s fine not much side effects other than tiredness but need to have 2 weekly blood tests & bp

    done though . 
    I guess ur on steroids too With the docitaxel 

  • Yes 8 x dexamethasone for three days straddling the chemo and 2 x prednisolone for rest of treatment. Also self inject with lipegfilgrastim day after chemo to stimulate white blood cell production. That does cause quite a bit of bone, joint and muscle pain for a few days but bearable. Otherwise main issues have been mild fatigue not helped by sleep issues that I think we all have. I attach link to a 2021 paper with a good review of current treatments: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8477651/

    It may have some points of interest for you.