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Over Treatment of Prostate Cancer

Posted , 7 users are following.

Sailor_Sam
Sailor_Sam

I have just been copied in on a letter from the Consultant Urologist to my GP giving an update on the appointment I attended following an MRI.

it says:- "Mr "Sailor Sam" was reviewed today. He is a know case of prostate cancer on active surveillance. His PSA has been slowly creeping up suggesting that he is progressing on a biochemical level. In view of this , radical treatment was discussed but "Sailor Sam" is not keen on this for fear of side-effects. His preferance is to continue with active surveillance and therefore he will be seen in clinic in 3 months time"

Now on the letter it says Diagnosis:- Gleason 6 adenocarcinoma of the prostate diagnosed in 2012. Latest PSA 3.3

MRI Scan shows T2 N0 - prostate cancer in 43cc prostate gland.

Staging is small volume. A small low signal foucs at the junction of peripheral and transitional zones on the left lateral aspect at the base does show restricted diffusion and is likely to represent a small focus of prostate carcinoma. It is organ defined. No further focus suspicious for prostate carinoma. The seminal vesicles show normal appearance.

The MDT 17.9.15 concensus of opinion - OFFER RADICAL TREATMENT.

So what I would like to hear is what people think about this? My Psa resutls have been May 2013 2.4

                                Aug 2013 1.5

                                Mar 2014  1.7

                                Aug 2014 1.7

                                Jul  2015 3.2

                                Sep 201 3.3

I know there are some very knowledgable people on this site but am I missing something? Offering radical treatment to a 52 year old man with this history? Is that right? I am a Mental Health Nurse myselt and work as part of a Multi-Disciplinary Team which is why I am having trouble coming to terms with their conclusion. 

Could I ask for the MDT decision to be reviewed by a different MDT? would it make a difference?

Or are they the "experts" who arrive at this decision following a certain protocol. Not sure if there are any NICE guidelines for offering treatment for example.

I know I will need treatment and I recognise we are lucky that we live in a society that has a health service that can help us so much, but is this a case of over-treatment which I've come to hear more and more about?

Anyway I've rambled on enough. Would like to hear your thoughts about this and indeed what would you do armed with this information?

thanks for listening

Sailor Sam

1 like, 37 replies

37 Replies

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  • terryw
    terryw Sailor_Sam

    Posted

    Hi  Do you have any symptoms?  Is there some reason that your PSA was being monitored?

    I'm 71 and my PSA has been moving up and down between 6 and 7 for the past three years.  I have no symptoms, this just came from a routine test.  I was referred to hospital where they were keen to do a biopsy, but I've decided there's no reason to go that way.  If I have a tumour it seems likely to be slow growing so I have no intention of ending up impotent and incontinent through having treatment that I probably don't need.

    There is an element of risk of course, and if I was 20 years younger I might feel differently and make a different decision.  But I think I would be looking for assurances that they knew I had an aggressive tumour which had to be treated, before I would sign up for the treatment.

    Hope it works out for you.

     

    • david41094
      david41094 terryw

      Posted

      PSA of 3.3 does not, of itself, warrant radical treatment. It is interesting to note that prior to 1983, PSA was not deemed to be an issue until it reached 10.0. Also, there is a move to have Gleason 3 redefined as it does not follow the same progression as Gleason 4 or 5 and 'cancer' is such an emotive word. I would research extensively before submitting to radical treatment - there are plently of books on Amazon and others.

      Good luck 

    • Sailor_Sam
      Sailor_Sam terryw

      Posted

      Thanks for that TerryW. I agree with you regarding the risk at my age. I would much prefer to be in this position having got to 72 rather than  from 20 years before.

      I had a PSA when I was 50 which was 5.7 and then another 2 weeks later  was 7. However, it went down to 1.7 a couple of months later and remained about that until 3 months ago. Someone suggested it could have been an infection that caused it to be that high initially.

      best wishes

    • Sailor_Sam
      Sailor_Sam david41094

      Posted

      Hi David thank you for that. When I read on here some of the PSA results, 3.3 doesn't seem that high. I will certainly take your advice and carry on researching the subject.

      I think there's the results of a 10 year study out next year that looked at the outcomes of Active Surveillance, RT or RP which hopefully I will be able to consider if I manage to put off treatment until then.

      Best Wishes

  • winn16126
    winn16126 Sailor_Sam

    Posted

    Very similar to my situation, low gleason, no symptoms , higher psa, however, psa alone is not an indicator of tumor aggression. Dr. Recommended radical treatment, which seems to be to be assembly line treatment. I'm getting more information from the pathologist, along with a second opinion.
    • Sailor_Sam
      Sailor_Sam winn16126

      Posted

      Hi Winn,

      it would be really useful to hear how you get on and what decision you come to and why.

      Can I ask, and please excuse my ignorance, but isn't  the gleason score an indicator of aggressiveness? I suppose a 6 can turn into a 7 or 8 or whatever and the only way you know would be to have another biopsy?

      I had two biopsies and I'm sure they didn't get the local anesthetic right because I felt every one of  those painful needles going in. Worst experience I've ever had!!!! 

    • winn16126
      winn16126 Sailor_Sam

      Posted

      Hey Sam... I came on after finding an elevated psa in May. Did two rounds of antibiotics to rule out an infection. I was biopsied Sept 26, got results last Thursday. 3 of 12 cores positive. Recommended surgery. And yes, Gleason is an indicator of tumor aggression, however, psa is not. I am
    • winn16126
      winn16126

      Posted

      I am asking pathologist to determine is my cancer is haploid or diploid , which also determines aggressive or non aggressive state of cancer. I will then decide on a course
  • leeniepie
    leeniepie Sailor_Sam

    Posted

    Being female I have no personal experience but I am a therapy radiographer.

    PSA 3 is low, Gleason 3+3=6 is middle - ish. Being t2 it is sensible ( and normal) to offer radiotherapy. Of course you can refuse and continue to watch and wait, this is your choice. The reason it is offered is because you get better results when the cancer is contained within the gland. Once it spreads outside (eg to surrounding areas or seminal vesicles ) you have increased treatment margins and so greater side effects with greater risk of damage to healthy tissues. However with modern treatment techniques side effects are minimised as much as possible.

    It is entirely your choice as to whether you want to treat it or leave it and see.

    • winn16126
      winn16126 leeniepie

      Posted

      With all due respect, 3+3=6 is not middle, it's the lowest gleason that us given.
    • derek76
      derek76 winn16126

      Posted

      For example, if the biopsy samples show that:

      most of the cancer seen is grade 3 and

      the highest grade of any other cancer seen is grade 4, then

      the Gleason score will be 7 (3+4).

      A Gleason score of 4+3 shows that the cancer is slightly more aggressive than a score of 3+4, as there is more grade 4 cancer.

      If you have prostate cancer, your combined Gleason score will be between 6 (3+3) and 10 (5+5). You might only be told your total Gleason score, and not your Gleason grades.

    • Sailor_Sam
      Sailor_Sam leeniepie

      Posted

      Thanks for that leeniepee. If I had a penny for every time I've heard it's your choice I'd be a millionaire but it's the information and advice from professionals such as yourself that informs the decision you make.

      Can I ask about T2 and what that means compared to other readings?

       

    • leeniepie
      leeniepie winn16126

      Posted

      it is the lowest grade that is generally seen, as when cells are at grades below this the patient is usually asymptomatic, and so would not be having a biopsy. Gleason 1 and 2 do exist and can be found incidentally, its just not very common. The cells at these stages are fairly well differentiated, and still resemble normal prostate cells, so treatment would most likely not be offered should cancer be discovered at this stage.
    • leeniepie
      leeniepie Sailor_Sam

      Posted

      tumours are graded T1-4 depending on their size and spread. for prostate cancer T2 means that the tumour is still contained inside the gland and hasnt spread anywhere else. how much of the gland the tumour is in will determine if it is T2a, b, or c.

      cancer research uk has some nice pictures if you're interested: http://www.cancerresearchuk.org/about-cancer/type/prostate-cancer/treatment/the-stages-of-prostate-cancer

      the size and spread of the tumour influences your treatment options, and outcomes, so generally the earlier its caught the better

    • alfred5
      alfred5 Sailor_Sam

      Posted

      Hello, my other half at 57 had no symptoms, a routine blood test found a psa of 3.7 in the May, biopsy done, G 3=3 cancer less than 5% of prostate. They didn't mention removal of prostate, suggested just watching it, by Dec psa was 4.9 so we decided to have treatment, consultant still suggested watching it, but we wanted treatment. Radiotherapy or Brachytherapy was recommended. So he had brachy done in Jan this year. I looked on lots of peoples profiles?avatars on the other uk prostate cancer forum. it is intersting to see what other had done. I was amazed that most go for prostate removal, with incontinence and impotence almost certain at least for a short time. But having said that, if the cancer returns after prostate removal then radiotherapy can be done, but if you have radiotherapy?brachy done first then on return you can't have more, removal of the prostate after these treatments is difficult, so I can see why some would prefer removal. But in your situation as long as you are carefully monitored, I would sit tight a bit longer. The other cancer forum (prostate cancer uk) has a great toolkit you can download too. As well as loads of Avatars to look at. I was surprised looking on there that some have very low psa with cancer in the bones, others have very high psa with no spread, so prostate cancer is very individual. All the best.
    • Sailor_Sam
      Sailor_Sam alfred5

      Posted

      Thank you very much for that. It's useful and interesting to read other people's experiences.

      Can I ask what the side-effects have been ?

    • alfred5
      alfred5 Sailor_Sam

      Posted

      Hello, I am probably not a good one to ask as my other half had very bad side effects. Apparently less than 10% of people suffer as my other half did. I know 3 other people that have had brachytherapy with no side effects. My other half actually got prostatitis after the biopsy, which got much worse after the brachytherapy. So he had a constant ache in his prostate. Particularly painful when sitting down. As he is a farmer this didn't help at harvest time. He also got radiation induced cystitis, so had severe burning when peeing, very slow flow etc. lots of night waking etc. after almost a year of antibiotics he is much better. But looking back I think he wishes he had stayed on active surveillance. But the consultant said it would need treating one day. Maybe a year, maybe 10 years. There was no way to tell. So went ahead with treatment.
    • winn16126
      winn16126 leeniepie

      Posted

      Very true, however, a pathologist, at least in the U S can only assign a gleason of 3 or higher.
    • Sailor_Sam
      Sailor_Sam alfred5

      Posted

      Thanks alfred5. I hope he continues to stay well. Those side effects as well as erectile dysfunction are the kind of things that worry me. If I was 72 and not 52 then for me I would go for it. But going to wait a little while longer for now. 

      Best wishes

    • alfred5
      alfred5 Sailor_Sam

      Posted

      At your age radiotherapy/brachytherapy shouldn't cause erectile dysfunction. The people I know that have had brachytherapy, the youngest was 50 at treatment and is fine in that department. The older one is 64 and has more of a problem, but he did before treatment anyway. My other half was 57 at treatment. I wouldn't say he has ed but erections are not as strong and a little more difficult to maintain, but it "works" fine. Seems the younger you have treatment the less ED is a problem. Our consultant said it erections woukd deflate slightly, which is about right.
    • Sailor_Sam
      Sailor_Sam alfred5

      Posted

      "Deflate" what a way to put it! It made me chuckle even though it's not funny!

       I'm just not sure I'm ready for any deflation yet although my wife probably is!

      I know they do the nerve sparing etc... I suppose It's a question of when and not if to get the treatment and not leaving it too large.

      many thanks once again

    • Sailor_Sam
      Sailor_Sam

      Posted

      Too late I mean. I think my iPad just did its own Freudian slip!
    • alfred5
      alfred5 Sailor_Sam

      Posted

      Yes nerve sparring is done when you have the prostate removed. Removal will cause ED unlike radiotherapy. But with time things start to heal after prostate removal and erections can return for some. But ED is less likely to happen with radiotherapy/brachytherapy but they say over time the radiation damage continues so things won't ever improve. We've yet to find out if things will get worse. It doesn't bother me how it is now, as long as it works. But it has bothered the other half, so he takes cialis, only 2.5ml every other day, these improve blood flow (normal dose is 2.5 or 5ml everyday) these have made a massive difference. I would rather he didn't take them until really needed. But he insists.
    • Sailor_Sam
      Sailor_Sam leeniepie

      Posted

      Thank you very much for that information leeniepie.

      so what does the N 0 (zero) mean after the T2 ? and I will have a look at that link.

       

    • alfred5
      alfred5 Sailor_Sam

      Posted

      The N refers to the lymph nodes I believe. So zero means not present in them. There is another symbol for bone mets too. Which will say zero if not present. Though my other half wasn't offered a bone scan.
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