All Systems Go

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Well, that was quick. I chased the medical oncologist (Greek God) up this morning and he has had a pow wow with the radio oncologist, so I was told to speak to him as they both thought hubby was eligible for SBRT on the distant mets. Did this at lunchtime and was asked when we would like it done. Whenever we replied. Got a text at 17:30 to ask if we are available TOMORROW  at 15:50 for the planning scan and can we take the PSMA PET scan disc. So all set for treatment starting next week. Having to sort out an apartment near the hospital for a couple of weeks as he predicts it will be 5 sessions on alternate week days.

  • I hope everything goes OK.

    Yesterday is history, tomorrow is a mystery and today is a gift.
    Seamus
    (See my profile for more)
  • Hi, sorry I am late to the party but that result is fantastic news.  Hope the celebration tonight was good. Best wishes, David

    Best wishes, David

    Please remember that I am not medically trained and the above are my personal views.

  • Hubby had a better night's sleep so I did as well. One thing I forgot to mention yesterday was that we had a discussion with the GG about PSA response after different types of radiotherapy. With SBRT the radiotherapy can kill off some of the cancer cells and break them open more quickly because of the high individual dose. This releases more PSA into the blood stream so don't worry if there is an initial rise in value - take it as a positive of all those cancer cells dying. Also, traditionally we have been told that the nadir is usually at 18 months post treatment, but now it is thought that the radiotherapy continues to lower the PSA for 2 to 3 years in some cases. There is also the phenomenon of the PSA bounce which can occur usually between 12 and 18 months post treatment. This is an increase of above 0.2 but followed by a drop below the level achieved prior to the bounce. It is more commonly noted after Brachytherapy and more ablative therapies like SBRT than standard EBRT so caution is advised when this bounce arises so as not to jump too soon into assuming a recurrence. Younger men with a low initial PSA and stage of cancer seem to demonstrate the bounce phenomenon compared to older men with a higher grade disease. The time to worry is if the PSA does not return to the pre bounce level. Another statistic which came out was that this bounce can occur in up to a third of patients. The mechanism of the bounce is still not fully understood but could be associated with stimulation of the immune system.

  • Brian, Congrats! I hope all went well and mother and baby are well!

    Lots of love

    Dafna

  • Morning AH,

    Thank you for the brilliant information re PSA roller coaster. This is so valuable.

    I hope you enjoyed last night sleep and please take care of yourself! You need to be healthy and well rested to look after hubby and after all of us!

    Lots of love

    Dafna

  • That’s fascinating, - the bounce/nadir and the amount of info you get out of the GG! MrBW’s drop recently hit the post RT nadir and he’s changed to 3 monthly blood tests from monthly, so I’ve been used to watching his bloods/liver functions wobble about and settle over the last year, so it feels like an age to get my hands on a blood test now. His PSA went down to its lowest point at 6 months and now over the last 6 months it’s bounced about a tiny bit, settling at 0.05. I’ve been wondering if that’s it or will he get a tad lower. I have read a couple of studies about levels of PSA after RT and indicators of reoccurrence. Both say if you can get under 0.05/0.06 =less likelihood. Over = likely reoccurrence. Whether this is a true fact I’m not sure, It has been on my mind for sometime, especially Bw is bang on that cusp. The other thing, I’ve been thinking about is how his level of HT (Zoladex and Abiraterone) affects this and is this (0.05) a true figure because PSA is suppressed . As you can see I’m the master of over thinking. 
    Seriously, I get nothing done now, my life before PC was so different, the bulk of my headspace now is spent on trying to work out what’s next! 
    Lx

  • Although newly diagnosed and not in the same position as Mr BW I do know what you mean about your headpace being full.

    I have found this overwhelming but I am tackling it by limiting the time I spend researching.

    There is too much information sometimes.

    My PSA level was going up, which was why I entered the diagnostic process, and then went down in the last test before (7.94 to 7.39). It seems to me that we are all different, and our journey's coincide in general but not in detail.

    If you have ever walked down the tunnel that leads from South Kensington Tube Station to the Science Museum and the V&A  you may be able to visual what I mean.

    Loads of people use it. They all walk at different speeds. Some leave at other exits, some join. Quite a few are walking the other way. The consistent theme is to go to the museums, but people arrive at different times and different speeds.

    I think that our bodies are much the same. The general thrust is similar, but the actual walking is different.

    Maybe some of us are buskers......

    I have being trying to use the Pomodoro technique to limit my obsessive searching - 25 minutes on the research, short break, 25 minutes doing something else.

    I hope that you find a way to decrease the pressure on your headspace.

    Steve

    Changed, but not diminished.
  • Hi Linda (  ), sorry to hear you are still consumed with PCa thoughts.  It sounds to me like Barry is doing really well and things should remain stable for a long time.   I would take encouragement from 3 monthly tests rather than monthly ones.  I think it might have been in my second year that I started to realise that being consumed with PCa wasn’t helping and we tried to focus on other things.  I know you can’t just turn off worrying, but it really doesn’t do any good and you need to make sure your own health doesn’t suffer.  You are both doing well having come this far.  Stay positive (it has worked for me for years).  Best wishes, David.

    Best wishes, David

    Please remember that I am not medically trained and the above are my personal views.

  • Hello BW

    Your post has helped me tremendously - so thank you! I knew I had read somewhere about the levels for predicting recurrence and could not remember if it was below 1 or below 0.1 !!!! I can’t find the source of this information though and I read it at a time of high emotion when ‘grasping at straws ‘ was the order of the day! If you or anyone can point me to a reliable source of such stats, I would be really grateful!

    my husbands last PSA was 0.06 - a months before his cover from Feb’s decapeptyl jab would have lapsed at the end of May and up from 0.03 immediately post rt. the oncologist said that with numbers as low as this there is nothing to worry about.

    My concern now is that he is complaining of hip and sciatic pain. Is this, could this be PC related or is it a new health problem? I’m scared silly that this might be the former but also wondering if I am over-reacting! Ibuprofen is proving very effective and as I type he is scrambling under a car showing our grandson how to do a service!!!

    As for me, I am chief cook and bottle washer with orders for blueberry muffins straight out of the oven for the next 2 hourly feed our teenage grandson needs! Better get on!!!!

  • Hi David, and  Thank you for your support. I guess he is doing really well and I need to think more about that. We are doing well with focusing on “living with cancer” and just getting on with life most of the time, I actually think Mr Bw does so much better than me as he seems to off load his fears and worries and then heads off to a game of golf! lol! I need to stop being triggered by every ache and pain he has. I’ve started doing Pilates and Yoga which is proving to be very helpful with focusing my mind and a helpful attempt to find my core muscles Muscle 

    Lx