Watchful waiting, Running out of options!

Posted , 6 users are following.

Hi everyone,

My dad was diagnosed with prostate cancer 9 year's ago. He had radiotherapy and all was well for a few years til his psa started to rise again in 2015 he was then put on hormone treatment like injections and after a while they stopped doing the job & he was switched to firmagon and casodex they worked well until a few month's ago psa started to rise again and has bn rising ever since. His consultant stopped the casodex as he said it's stopped working he will continue firmagon. At his last consultation last week the doc decided to watch and wait for a few more weeks he has had scans and tests and all are clear. If at next visit his psa has gone up again he said he would start a new treatment but that treatment now was limited and he was running out of options so to speak and if this treatment didn't work thr is no more. My dad is 78 and didn't quite pick up on what the doc said and I didn't quiz him on it either but I'm a little confused all his scans are clear?? What does it mean then if he says no more treatment is that it then no more they can do are they just goin to wait for the cancer to spread!! He's in great health otherwise so as he has no symptoms thr not overly concerned but I'm v concerned & my dad came away thinking he won the lotto!

0 likes, 9 replies

9 Replies

  • Posted

    I'm 78 and was also treated with RAD and put on HT like your dad. I cant say what the rising PSA means but you said rising. Rising to what may I ask?  It's good the scans are clear and I don't know how accurate the scans are for detecting cancer So I really don't have any idea why the PSA is up.  All I know is they use the PSA indicator as a main test so see if the cancer is still in remission. 

    It would be nice to know what they find out.  

    • Posted

      Thanks John he gets his psa blood checked every 5 weeks before he sees his consultant and it's gone from 0.4 to7.80 in a few month's his gp told me it's still rumbling away somewhere which is causing the psa to continue to rise. He continues with firmagon monthly injections and consultant is hoping his psa will have dropped at next visit of course he says this at every appt but it isn't dropping.

  • Posted

    Hi Casey,    I am a few years younger than your Dad and was diagnosed with PC three years ago .  I have had no treatment since then preferring to be on active surveillance because when you get to our age the PC is more times than not a pussy cat and your Dad and I will probably die of something other than PC 

    what was your Dads Gleason and when did he last have an MRI? 

    What is his PSA ? 

     

    • Posted

      Thanks Triplets, He had a ct pelvic/abdominal with contrast and a bone scan few week's ago the ct scan showed query lesion in his left kidney so he had an ultrasound which thankfully showed nothing sinister. His psa was 0.4 and over a few month's has gone to 7.80. When he was first diagnosed in 2009 his Gleason was 7 but nothing ever mentioned since does it change? I presume it would be more now? He had scans done in 2015 which had showed capsule involvement but no mention of any of that on these scans. On all his reports it says metastatic cancer so it has spread. At the min he is under surveillance if psa has dropped at next visit he will remain that way but if it goes up anymore they will change his treatment again and maybe get another few month's praying year's more.

  • Posted

    Firmagon is an LGRH agonist IT cuts of the supply of testosterone in the body

    ​Casodex  is supposed to block the testosterone from reaching cancer cells 

    ​Cassodex is an Anti-androgen commonly used with LGRH agonist 

    ​The Hormone therapy is supposed to slow the cancer for years 

    There are other medications like Zytiga that might be something to look into if the Firmagon does not work. 

    • Posted

      Thank you John have heard about Zytiga and will def bring it up at his next consultation if his psa is still rising praying that it won't.

  • Posted

    Casey I am sorry to hear of your Dad's situation.

    You mention Dad had some scans. May I suggest that only one scan is really worth the money: PSMA PET CT. This is specific to prostate cancer, where other scans are not. A  a bone scan per se doesn't cut it, if extent of the caner is what you're looking for.

    Even with a PSMA PET CT scan, nothing may be revealed by way of tumours on the skeleton. And if the PSA continues to rise then a good bet is that the cancer is microscopic and hence while  present, is too small to be captured by the scan.

    John is right when he suggested Zytiga. I am 51yo and take Zytiga tablets and its is proven to be better than Casodex. It is also very expensive. By "proven" I mean according to the literature. I never took Casodex. I was offered it or Zytiga and chose Zytiga.

     was on Firmagon i.e. monthly injections and recently changed to Zolodex every three months, which has given me LESS hot flashes than Firmagon promises.

    Does Dad have hot flashes or fatigue? Does he have any other symptoms?

    • Posted

      Hi Barney and thank you for your reply. I have never heard of those scans before and will ask at his appt in 2 week's. He has hot flushes with firmagon and a horrible red sore lump at injection site he falls asleep easily enough like if he sits for a few mins he'll nod off. Will let you know what the consultant says at next visit.

  • Posted

    Ok. First of all get him to switch to Zolodex. It does the same job as Fimagon and

    a) Is given every three months unlike Firmagon's monthly injection;

    b) has NO irritation at the site where the injection is given, as is ALWAYS the case with Firmagon; and

    c) at least in my case, give LESS hot flashes than Firmagon.

    Also if possible get the injection at a cancer centre where the nurse knows how to inject this properly.

    Firmagon for instance must be given SLOWLY and many GP/PCP (General Practitioners/ Prime Care Physicians) don't know how to give this properly. This often results in more discomfort for the patient.

    Good Luck!

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