New and unsure

  • 6 replies
  • 164 subscribers
  • 463 views

Hi, first time on this forum.  I have been on active surveillance for a couple of years but my latest (3rd!) biopsy has returned a Gleason score of 7 (4+3) in two separate areas.  Now facing the difficult decision of whether to go for HT/RT or surgery.  I have been reading some of your posts which are very helpful although in places quite scary - at least I have a clear idea of the worst that can happen and ways of dealing with it!  Absolutely no idea which approach to go  for, change my mind at least 5 times a day so far!  Just read Jyoti Shah's book which was recommended on the forum which I have found useful. Still have a few weeks to decide so hopefully I will manage to work things out with a bit of help from my family.

  • Good Evening   A warm welcome to the Macmillan online Prostate Community. I am so sorry to find you here but it’s a great place for advice.

    As you have been “stalking” us for a while you know what my answer is going to be!!

    As you have the choice of both routes open to you, grab a pen and paper and for each route write down the pros and cons as they affect you. Use trusted sources for your information - our forum, people who have “been there done that”, Macmillan and Prostate Cancer UK (not Dr Google). Ask any questions, we are all happy to answer them.

    it’s personal to you - no one else. Take your time, weigh up the options.

    I am on the HT/RT route - no choice, you can read my story by clicking on my avatar.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Good evening DAR55, I’m sorry that you’ve found your way here, we’re all a friendly bunch and happy to help / talk about / give an opinion on any subject you could mention about PC. 

    As for me, I’m an open book to ask anything you want, and I for one am happy to answer anything on the subject of prostate cancer on my journey from discovering it to where I am now, 7 weeks post surgery. 

    I completely understand that a lot of this is scary, especially when you have yet to choose your route, but trust me, you’ll never be on your own on here.

    Every one who has been given a choice of routes, chooses their route that they feel fits best and that they’re most comfortable with, but the most important aspect of your choice, is to ensure that you make your choice “fully informed”. So to that end, I concur with   in that read everything on Prostate Cancer UK and here on Macmillan plus use us all to ask opinions & questions as they arise for you, you’ll always get answers and it won’t be a long wait.

    Happy to give you the reasons for me choosing the operation route if you wish, just drop me a line on here & I’ll answer it as soon as I see it.

    Anyway, for now, take care and above all, be as positive as possible, it may not be easy, but it goes a long way to getting through this in between time.

    John

  • Hi  - you’re definitely approaching this with the right attitude (and, having been on AS for two years, you’re probably well over the “fear and worry” hump).  Jyoti Shah was my urology consultant- a no nonsense, super efficient operator.  However, in the end, after doing my own research and with the full backing of the MDT, I went down the oncology route (brachytherapy boost + ADT).  I’m sure you will take a similarly measured approach to your decision.    AW

  • Thanks for the replies guys!  It helps a lot to hear from others who have been in a similar position and come out the other side.  Reading through the posts on this forum is certainly helping me to think more clearly about the relative pros and cons.

  • Hi Dar55

    if you want to, you can read about my reasons for choosing the op route here over the hormone & radiotherapy route that I was offered.

    community.macmillan.org.uk/.../johnyboy

    All the best

    John

  • Hello Dar55.

    Can't really add to the good advice you've already received other than to say I was in a similar position to you. Take your time and even pay for a short consultation with a specialist for a second opinion if you are able to. Having confidence in the treatment route you choose is important for your own peace of mind. Every case is different but your stats are similar to mine, so click on the panda to follow my history. From a very gloomy place in January 23 , I'm very positive about the future now. Millibob and others on this forum were a great support in the early days. All the best .