Update - PCa 42 years old

loro17
loro17 Member Posts: 4
in Prostate Cancer #1

Hi All,

It's been some time since i posted on the forum.  I believe the site went through an update and might have removed some of my posts.

Anyway, i was diagnoed with PCa back in November 2018 (41yrs old), with mets in my right scapula, 3 small nodules in my left lung, left hip area and the lymph nodes.  My oncologies at Sloan (Susan Slovin) started me on Zytiga, with prednisone in January and my progress thus far has been great.  PSA has decreased over the last 6 months and it currently sits at 0.38 (originally 175).  Changed my diet a bit, upped the training exercise and lost around 20lbs total since November.

Had a recent PET scan and it showed that the lung nodules are gone, no sign of metabolic activity in the bone mets and the lymph nodes have shrunk considerably. I am delighted with the news on progress and now my Onco recommends i go on and prodeed with radiation.  Not sure how i feel about that.  I am leaning towards doing it but hoping some of you guys on here would kindly weigh in on what i can expect.  My radiation oncologist would not give me a definitive answer on this since the research/statistics just aren't there.  I suppose it can only help and the benefits outweigh the downside.

A lot of you were helpful when i was initally diagnosed and would love your insight.  I know Vasco D and others commented on my post quite frequently.  :)

 

Thanks,

Rob

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited August 2019 #2
    Super

    You share some super developments there, Rob.  Your data was not lost due to an update; there was a huge loss of data at CSN through either a hardware or software issue, but it was NOT a 'hack' or security breech, we were told.

    Your situation was obviously metastatic, and prostectomy is not curative of metastatic PCa.  To effect cure, R.T. is the only option.  It will be a 'maybe' as to whether that is curative either, but it is what is available. Continued chemical treatments and then H.T. would likely continue to help, but will not cause cure, and at some point (virtually always) will cease to be effective, although we have guys here who have prospered on HT for 20 years or more.

    Given your young age, if it were me making the decision, I would do it.  Sloan is the best in the world, so you are not likely to get better advice elsewhere.  

  • eonore
    eonore Member Posts: 178 Member
    #3
    Radiation

    If Hey Rob,

    Great news on you reaction to the Zytiga.  If it helps at all, I recently went through eight weeks of salvage radiation and found that it was more of an inconvenience than a catastrophe.  I had minimal side effects and other than the tedium, it did not particularly impact my quality of life.  If the staff at Sloan feels that it has the potential to make a difference in long term outlook, I wouldn’t hesitate to do it.

    Eric

  • eonore
    eonore Member Posts: 178 Member
    #4
    Radiation with low volume of metastatic tissue

    Rob,

    If I am not mistaken, the current thinking is that radiation improves long term survival even with a low volume of metastatic tissue.

  • Josephg
    Josephg Member Posts: 383 Member
    #5
    Next Step

    The logical and accepted next step for a person in your situation is radiation therapy.  While I am not a doctor, and not qualified to make medical recommendations, my lay person recommendation is for you to consider proceeding with radiation therapy, as recommended by your Oncologist.  There are certainly side effects from radiation therapy, some common to all individuals, and some specific to some individuals.  But for me, the side effects were acceptable, and were no worse on a day-to-day quality of life basis, than the side effects from hormone therapy.

    My personal experiences for both hormone and radiation therapies are listed in the link below for your viewing, if you wish to do so.

    https://csn.cancer.org/comment/1414101#comment-1414101

    I wish you the best of outcomes on your journey.

  • loro17
    loro17 Member Posts: 4
    edited August 2019 #6
    eonore said:

    Radiation

    If Hey Rob,

    Great news on you reaction to the Zytiga.  If it helps at all, I recently went through eight weeks of salvage radiation and found that it was more of an inconvenience than a catastrophe.  I had minimal side effects and other than the tedium, it did not particularly impact my quality of life.  If the staff at Sloan feels that it has the potential to make a difference in long term outlook, I wouldn’t hesitate to do it.

    Eric

    Thanks Eric!

    Thanks Eric!

    Yes, current thought process is that it would improve long term survival and would characterize it as ”living with chronic disease“ if it works  

     

  • loro17
    loro17 Member Posts: 4
    #7
    Josephg said:

    Next Step

    The logical and accepted next step for a person in your situation is radiation therapy.  While I am not a doctor, and not qualified to make medical recommendations, my lay person recommendation is for you to consider proceeding with radiation therapy, as recommended by your Oncologist.  There are certainly side effects from radiation therapy, some common to all individuals, and some specific to some individuals.  But for me, the side effects were acceptable, and were no worse on a day-to-day quality of life basis, than the side effects from hormone therapy.

    My personal experiences for both hormone and radiation therapies are listed in the link below for your viewing, if you wish to do so.

    https://csn.cancer.org/comment/1414101#comment-1414101

    I wish you the best of outcomes on your journey.

    Next Step

    Thanks for the link, Joseph...very helpful! They recommended 26 straight sessions for the localized area and an additional 10 if I wanted to go after the bone mets.  Glad you’re doing well!

    Best,

    Rob

  • loro17
    loro17 Member Posts: 4
    #8
    Max Former Hodgkins Stage 3 said:

    Super

    You share some super developments there, Rob.  Your data was not lost due to an update; there was a huge loss of data at CSN through either a hardware or software issue, but it was NOT a 'hack' or security breech, we were told.

    Your situation was obviously metastatic, and prostectomy is not curative of metastatic PCa.  To effect cure, R.T. is the only option.  It will be a 'maybe' as to whether that is curative either, but it is what is available. Continued chemical treatments and then H.T. would likely continue to help, but will not cause cure, and at some point (virtually always) will cease to be effective, although we have guys here who have prospered on HT for 20 years or more.

    Given your young age, if it were me making the decision, I would do it.  Sloan is the best in the world, so you are not likely to get better advice elsewhere.  

    Super

    Agreed.  Thanks Max!  

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