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Decisions Decisions Prostate treatment

Posted , 6 users are following.

Sailor_Sam
Sailor_Sam

Hi everyone. I'm 52 years old and got diagnosed 2 and 1/2 years ago following psa of 5.7 up to 7  2 weeks later, then down between 1 and 2 for the past two years until 3.2 and 3.3 (a week ago)

Biopsy at the beginning found 1 core out of 12 and a second biopsy found 0 out of 12.

I don't have any symptoms but was sent for an MRI 3 weeks ago which showed the same small bit contained within the Prostate but now they are recommending treatment?

Any advice please? what did you do? do you regret it? what informed your decision?

TVM

1 like, 40 replies

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  • david41094
    david41094 Sailor_Sam

    Posted

    The single most important piece of evidence is the Gleason score of your biopsy. If it is 3+3 or 3+4 I would seriously consider Active Surveillance. I would also try to get a second opinion as the GS is so important. My hospital were very reluctant to do this and insisted that my grade (4+4) had already been peer-reviewed so would not change. I nevertheless took it to another hospital (UCHL) and it was regraded 4+3 - not a massive difference but it took me out of the high-risk into the intermediate-risk category. Please read the US Task Force and PIVOT trials, both of which conclude that for low-grade cancers treatment is of little or no benefit. Assuming you have a higher grade, I would consider the placement of the nodule - is it near the surface of the prostate or near the bladder or sphincter? Your PSA pattern would suggest an infection could have been responsible for the earlier increase - you would not expect such a fall if it were PCa.

    If I were in your position, and assuming GS is not 4+3 or higher, I think I would opt for Active Surveillance. Another study (I apologise I do not remember the name) concluded that delaying treatment seems to have no overall effect on outcome so you are not taking a huge risk. Whatever you decide, stick with it and never look back.

    Good luck.

    • Sailor_Sam
      Sailor_Sam david41094

      Posted

      Hi David,

      that's very ineresting to hear. I know originally the Gleason was 3 + 3 and since then I've only had the MRI 3 weeks ago which the nurse said is the new way of doing things. He said that people being referred now have an MRI first.

      I also suspected I might have had an infection at the beginning but then they did find something in one of the twelve core samples although none out of twelve in another.

      You've certainly given me some food for thought and I will be asking questions about this next week.

      thanks again David. Really useful advice.

    • david41094
      david41094 Sailor_Sam

      Posted

      Please, please, do tons of research before committing to treatment. Too many people are put on the PSA-biopsy-treatment treadmill without due consideration. There have been numerous articles in the UK press (Daily Mail and Daily Telegraph to name just two) about the overtreament of this disease and if you don't want to go too far just look at the article on this very website by Dr Sarah Jarvis.

      I am 56 years old and if I had 3+3 I wouldn't go anywhere near treatment (alas, that is not the case). Finally, have a look at Carl's posts - he has spent a great deal of time researching this and I respect his views.

      Wishing you all the best,

      David

    • Sailor_Sam
      Sailor_Sam david41094

      Posted

      Ho David, I had a look  at those research studies and it does make you wonder. The results of the Protce T 10 year study aren't out till next year. They compare about 550 men each of three groups; RC PC and active surveillance. Wish I had the results now.

      Once again, really appreciate your input. 😃😃

    • Sailor_Sam
      Sailor_Sam

      Posted

      David - you mention Carl's posts - what's his user name etc please ?
    • norma72045
      norma72045 Sailor_Sam

      Posted

      Morning Sailor Sam,If your talking about the Carl I think your talking about,his name is carl05115, if it's the same Carl I was PM he's from the US so do take that into consideration. Although I will say he is very honest.

       

             Good Luck.   Keep Questioning .

    • david41094
      david41094 Sailor_Sam

      Posted

      Been thinking a bit more about your post.

      ​Autopsies show that the percentage of men with PCa roughly corresponds with their age - so, 50% of 50 year-olds, 80% of 80-year-olds etc. The vast majority of these men will never know about their PCa and will die from something unrelated. What seems to have happened to you is that an unfortunate sequence of events (prostate infection - high PSA - biopsy - one core found) seems to have uncovered a small nodule of PCa which would be there in most men and this has set you off on a prostate cancer scare. As Norma says below - keep questioning.  

    • Kombi_Cruiser
      Kombi_Cruiser david41094

      Posted

      david41094...sorry to throw your statistics into chaos...at 48 I had biopsy results @ 95%...
    • david41094
      david41094 Kombi_Cruiser

      Posted

      One example does not invalidate the statistics which are based on the population as a whole. My point to Sailor Sam is that under normal circumstances he would never know about his PCa and probably never would. It is interesting to note that cancer of all types seems much more prevalent (based on autopsies) than would be expected which suggest we all have cancers throughout our lives which our immune system heals and we are none the wiser (this is definitely getting off topic, however).

      All the best     

    • Sailor_Sam
      Sailor_Sam david41094

      Posted

      That's something I had thought about. If I had gone for my PSA doing a couple of months later then this whole sequence of events would never have happened. No biopsies, no MRI, and now tomorrow I'm going to hear that they recommend surgury or RT with all the side-effects.

      I don't know exactly what the MRI revealed so I will have to reserve judgement, but unless it's really aggressive why treat?

      Could I not just ask for another MRI and PSA test in 3 months ?

      The nurse said they were recommending it due to PSA doubling from 1.7 to 3.2 (3 months ago)( but the PSA last week was 3.3 so does that mean it's steading out?

      My head is going to explode and feeling nervous!

      thanks for all the input everyone.

    • supercargo
      supercargo david41094

      Posted

      David / Kombi Cruiser

      Thanks for your inputs, all views are valid in this terrible disease.

      Sometimes statistics are confusing.

    • supercargo
      supercargo Sailor_Sam

      Posted

      Hi Sailor Sam

      Hopefully your Specialist Nurse explains the for and against tomorrow. I was very lucky with my Nurse. Don't forget these Nurses talk to, and give guidance to, people like us every day.

      These initial stages of dignosis and tests are always very worrying.

    • norma72045
      norma72045 Sailor_Sam

      Posted

      Hi Sailor Sam, I would just like to point out here,that my hubbies Oncologist,did point out to him what David says about,most men die not even knowing they had PC.  Also he said blood test are pretty useless at detecting cancer or its severity,same goes for MRI scans,the only definite result is the biopsies. My hubby chose Hormone injections and radiotherapy and I can truthfully say the side effects have been minimum,few hot sweats,to start a little tied,but now he's his normal active self. He's got 2 more weeks left of his radiotherapy.

      My advise to you would when you get to your appointment tomorrow,go fully armed with Questions that you've wrote down,and if your not convinced ask for another appointment,don't get pushed into anything your not sure of.

      One core don't make it an emergency .

      Its your body,your health,your decision . Keep digging and take care.

                          Norma.

    • Sailor_Sam
      Sailor_Sam norma72045

      Posted

      Thanks for that Norma. I will certainly take your advice and that of david and the others.

      It's also nice to hear that some people don't get particularly bad side-effects from RT. A lot of the posts sound awful for some of the people who have RT. 

      If it does come to it I was favouring RT over RP  but they both sound pretty uncomfortable.

    • norma72045
      norma72045 Sailor_Sam

      Posted

      I don't think radiotherapy is uncomfortable,I thinks it's more inconvenient for a couple of months,and the staff are really nice and accommodating .

      Once you've come to a decision you'll relax more,I think it's like anything it's the Unknown that worries you.  I think you'll be fine in whatever decision you make.   Just remember "one shoe don't fit all" Good luck.

                And keep us in touch.

    • norma72045
      norma72045 Sailor_Sam

      Posted

      Your welcolme, I know how frightening these problems can be.

      Ive had enough of my own health problems and medical mistakes

      thats why I say get all your information and questions ready. Xx

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