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Managing treatment and side effects

Share experiences, and ask questions about treatments and managing side effects.

  • 16 conversations

Original symptoms

Started by Anonymous on 12 March 2018 at 21:12
Edited on 12 March 2018 at 21:25

Hello everyone. I'm new on this site and have been advised to post something just to get on the radar. My profile details my condition but it is Prostate Cancer T3b Gleason 9 (4/5) suspected lymph node invasion and it is seminal vessicles. I was told by surgeon that RP not advisable as unlikely to remove all cancer and ne chance of nerve sparing. So I'm going to have RT which will be IMRT at Freeman Newcastle, 37 fractions targetting prostate, lymph nodes and seminal vessicles. I have frequent need to urinate during night and day. ED definitely very present. I don't believe this is HT effect as I had it before, is that possible?

Comments (6)

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Displaying 6 comments

  • From Anonymous
    14 March 2018 at 21:29

    Hi Richard,

    I've sent you a PM, as my response is rather long and detailed for this conversation.

  • From Anonymous
    14 March 2018 at 20:23

    Hello again,

    I am due to start RT 37 fractions around 19th April. Onco said I will have PSA and testosterone check a couple of weeks before. Advised not to have RP as less than 50% chance of removing all cancer. I imagine RT has a similar risk of not fully working being T3b G9? Onco said 65-70% chance of "not requireing different treatment afterwards". I'm annoyed that private onco advised getting a prescription of Flomax (400 micrograms). This was last Wednesday? My local health centre won't prescribe this despite the fact they have sent a letter to private onco asking for NHS RT treatment??????? I just want a prescription for Flomax?

    Very frustrating!!


  • Picture of SusieQ
    From SusieQ  
    14 March 2018 at 09:41

    Hi Richard,

    I can't top Keith's reply, which is excellent.

    I hope you dont mind me adding a little information here. May I reassure you that Prostap and Zoladex work in very similar ways. The injections are given three monthly, as they've been found to be as effective, and it saves patients the hassle of having to have monthly injections. I imagine it is cheaper too, but that's not the prime rationale behind the three monthly injections.

    Not everyone gets side effects - (see this page from Prostate Cancer Uk website).The article states that 'Hormone therapy affects men in different ways. Some men only get a few side effects or don’t get any at all. This doesn’t mean that the treatment isn’t working.'

    It does take quite a few weeks for the medication effects to 'kick in' for some people.

    It's an understandably anxious time though, and Keith's advice about the treatment being a marathon not a sprint, is sage advice...

    Warm wishes


  • From Anonymous
    13 March 2018 at 23:51

    I have no idea about the relative cost of the different drugs, but both Prostap and Zoladex have been available since the 1980's, so I wouldn't expect there to be much difference, since they both do the same job.

    Also, I don't think that you need to worry about the 3 monthly injections being less effective. I've been on them for about 15 months now. My testosterone is less than 0.5 (should be about 18 - 20 at my age, I think) so still seems to be working OK.

    Everyone can have different experiences on HT and I found that it took several weeks before I started to notice mild hot flushes . Over time, these became more pronounced, along with some pain in my feet, mainly the heels. Since then symptoms have been quite variable in their severity, although nothing too bad.

    It's quite natural to be concerned that the HT isn't working, I wondered this myself at the time, due to minimal symptoms. However, you shouldn't worry about this since it's probably working fine. Your next blood test will no doubt show a big reduction in PSA level.

    Allow yourself time to absorb the diagnosis and realise that there's a very good chance that you'll get a complete cure. This will be a marathon rather than a sprint, as even after RT there won't be an instant "you're cured" scenario. PSA levels will need to be monitored for a significant time afterwards, before you can be considered to be in remission. Mentally, this might be difficult to deal with, due to the ongoing uncertainty.

    You're entering the unknown and it's a scary place, but I hope that helps a little bit to reassure you.



  • From Anonymous
    13 March 2018 at 20:23

    Hello Keith,

    I read that Prostap is often prescribed as it is cheaper than Zoladex. I also read the 12 week injections are cheaper and thats why NHS do them. Is any of this compromising effectiveness of HT treatment? I'm not having side effects so a tad concerned that HT may not be working!!! I will have PSA and testosterone check before RT starts in a couple of weeks. We'll find out then I suppose! I've got such bad vibes about how bad my situation is. Onco said you have 65-70% chance of "not needing different treatment after 5 years"???



  • From Anonymous
    13 March 2018 at 10:34

    Hi Richard,

    Welcome to Maggie's.

    I had a similar diagnosis about 18 months ago and completed RT last July. I'm still on HT (Zoladex) and this will cause ED, but I had no issue prior to treatment.

    I didn't have much issue with urinating at night either, but have since RT, although it does seem to be slowly improving.

    Please feel free to PM me, if there's any questions you want to ask.

    Best Wishes


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