The path I'm taking

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Having agonised about what to do for over a year now I have finally decided. Nothing. Well, not quite nothing but what is termed ‘watchful waiting’. My PSA has steadily increased over the past two years from 5.4 to 7.4 and in September my GP referred me to a urologist. The urologist, who arrived very late to the surgery, did a quick DRE then said that he would refer me for a biopsy. I wanted to discuss the options, including MRI as I didn’t want to undergo an invasive procedure without proper discussion. Also, I had read that in a test conducted on 223 biopsy-naïve men that biopsy was no better at detecting PCa than MRI. The link to the study is here http://www.europeanurology.com/article/S0302-2838(14)00211-5/fulltext/prospective-study-of-diagnostic-accuracy-comparing-prostate-cancer-detection-by-transrectal-ultrasound-guided-biopsy-versus-magnetic-resonance-mr-imaging-with-subsequent-mr-guided-biopsy-in-men-without-previous-prostate-biopsies and the conclusion reproduced below.

We found that mpMRI/MRGB reduces the detection of low-risk PCa and reduces the number of men requiring biopsy while improving the overall rate of detection of intermediate/high-risk PCa.

Unsure how to proceed I asked my GP to refer me to a private urologist with the hope of being able to discuss the alternatives.

In the meantime I did some extensive research and discovered two further studies which concluded that for low grade PCa (PSA<10) the outcome for watchful waiting was no worse in terms of morbidity that invasive treatment and the outcome in terms of quality of life was much better. Both studies were conducted over at least 10 years by reputable agencies. One, conducted by the New England Journal of medicine is here http://www.nejm.org/doi/full/10.1056/NEJMoa1113162 . The other can be found by searching 'PIVOT'. Also, a number of well-known doctors have published articles in favour of doing nothing – Dr Mark Porter in The Times and Dr Sarah Jarvis in this very website, not to mention other articles in The Daily Mail, Telegraph and Independent. I got to thinking that if invasive treatments did not improve my outcome, what was the point of a biopsy?

I finally got to see a private urologist who discussed the options and, although he was marginally in favour of a biopsy, did not object to my proposal. So now I am going to monitor my PSA and I will reassess the situation if/when my PSA goes into double digits. I have since gone on a no-dairy and low red meat diet and my latest PSA (Dec14) was down marginally to 7.2 – still high but moving in the right direction. I appreciate that this course of (in)action is not for everyone and not knowing is frustrating at times, but for me at least, I feel it is the best current option.

I am 56 years of age and my father, who is still very well had an RP for PCa about 15 years ago. All DREs have reported ‘enlarged but benign-feeling’.

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  • Posted

    This was all interesting to read, my husband is one year older than you, with a psa of 3.7 he was told to have a biopsy, which he did, it caused him to get prostatitis, it has been causing problems for 6 months, pain he didn't have before. The results did show prostate cancer, slow growing, with Gleason of 6. So many things I have read seem not in favour of just watching it. I have not looked up some of the articles you have mentioned, but will try to find them. Psa was on 4.0 last time and it is due to be have another psa again next week. We are due to see the consultant in 2 weeks to discuss a date for Brachy.I would love to hear from anyone who has just watched it successfully. 
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    • Posted

      I notice you are changing your diet. On diagnosis I changed my diet but in very different circumstances. I followed a strict vegan diet with no dairy. I found it satisfying and my general health  improved wiith improvements in clarity of thought and physical strength and endurance. These benefits despite being on hormone therapy. You would have the additional advantage of seeing if you gained any improvement in your PSA. 
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    • Posted

      Thanks for your response. I am no medical expert but a PSA of 4.0 seems very low to be initiating invasive treatment. Until 1985 anything below 10 was not considered abnormal. You state that so many things you have read seem not to be in favour of just watching it. I believe this is due largely to cognitive dissonance - people will stick by a decision or belief even if the evidence is to the contrary. And of course, we can only take one path and will never know the outcome of taking the other path. Please read the article by Dr Sarah Jarvis on this website and try to read the article by Dr Mark Porter in The Times - it is copyright so I cannot link to it. Both The Telegraph and Daily Mail also have interesting articles which are available online. Whatever you decide I wish you and your husband the very best.
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    • Posted

      Hi, thanks. Yes they are encouraging watching it, but saying if he watches it  he needs a much bigger biopsy first incase they missed a faster growing part. I have read of a more aggressive form being missed in a 12 needle biopsy. The consultant agreed. Nothing showed on the MRI but since the biopsy 6 months ago my husband has had pain in that area that won't go. (had 4 months of antibiotics) He seems to think the cancer is causing the pain, but it wasn't there before biopsy, so more likely to be that. Also being a farmer he can't take any time off work, but January is the quietest time of year, so he thinks now is the best time to treat. If the psa shoots up in calving season or harvest time he won't be able to stop work to have treatment, so seems a good idea to do it at a quiet time But yes, we have been wondering which path to take. It is a difficult one. Another pas being done Monday.
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  • Posted

    Well David,  you are not going to like this :  

    Having a PSA  of  7.4 at the age of 56 is definitely bad news. Even with dietary amendments a reading of 7.2 is still bad news.  

    You have got Prostate Cancer.  

    You are too young to watch and wait.  You have got a wife.  If your approach is badly wrong,  which I suspect it is,  then what about her ?  The W&W  approach is normally reserved for the elderly.  If you are not going to act upon 7.2 to 7.4 then what are you going to act on ?   Doubtless at this time,   you are almost symptom free but that does not mean you are disease free.  There are different types of PC,  some far more aggressive than others.  Right now,  you do not know what type you have.  Also, slow growing cancers have the ability and potential to change into aggressive cancer.

    I hope to have helped clarify the risks for you David and wish you well with whatever course of action / inaction you decide on.  Five years ago I could have written the exact same letter as you.  Back then I was in denial about PC  until in  February 2014 and with readings :PSA10 / Gleason 7 ( 4+3 ) /  T2b my Urlologist with whom I was discussing options including doing nothing said  ' we are trying to save your life '.

    Now.  my PSA is 2.2.

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    • Posted

      i have found over the months that Dudley's straight talking and advice has been very beneficicial to me. I was unaware until my first meeting with the urologist that I had a PSA of 7 in 2011. By july 2014 PSA was 18. My profile shows that I was diagnosed with agressive PCa. Within a short time more I could have been T4. No hope of a cure were that the caae. As it is, the statistics are not in favour of a cure for me now, but I am going for it. I am doing whatever it takes. Some of it has proved very unpleasant but it is my one chance and I will not turn aside.
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    • Posted

      Thanks for your response. Your definitive statement is not, however, backed up by statistical evidence. A reading of 7.2 at age 56 far more likely NOT to be cancer (even with a family history). There are many studies online which correlate PSA readings to subsequent biopsy results but here is one from science direct.  http://www.sciencedirect.com/science/article/pii/S1569905602000532

      I do understand that I may well have prostate cancer but the reason for my decision is that I believe that my outcome is currently worse by having invasive treatment - of course I may be wrong. Studies based on autopsies of men who died of unrelated causes show that up to 50% of men of my age would have a small amount of cancer anyway. This percentage goes up to 70% for 70 year-olds. Obviously you have opted for treatment and you will only ever know the outcome of this course of action. For me, at present, the loss of quality of life more than offsets any potential longevity. I wish you will. 

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    • Posted

      George, thank you for responding to my post. I intend to take further action before my PSA reaches 18 - probably 10-15. The limitation of diagnostic tests (PSA, DRE and Biopsy) mean that we will never know how aggressive our PCa is until it often too late. I do realise that if I have an aggressive variation then I should act now. However, my PSA Doubling time and DRE results lead me to believe that this is not the case. I sincerely wish you all the best and thanks again for your response.
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    • Posted

      Hello, seems the less invasive treatment is Brachy, once psa has gone over 10 they won't do it. So that is why we are considering Brachy now, even though psa is only 4. My husband is terrified of the side effects (permanent ones) but as I am a lot younger than him, we have 3 young children (youngest 5 years old) we feel treatment is possibly best. Before the biopsy I read if you have a psa over 4 (in your 50's) with no symptoms then it is more than likely cancer, as things like enlarged prostate cause a raise in psa, as my husband has a normal size prostate and no symptoms we knew what the biopsy was going to say. The hospital is pushing for us to watch and wait. But it is a difficult decision, but surely you would rather have the simlest treatment? Than wait and have to have more severe treatment? That is how we see it. Though I have read after treatment there is a 30-60% chance of it returning within 10 years, when and if it returns it is usually in aggressive form, so that is somewhat off putting, especially as it is so called slow growing now. I hope you come to good decision, we are over 6 months from diagnosis and still unsure of which way to go! 
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    • Posted

      I think you are definitely wrong in the statement 'I read if you have a psa over 4 (in your 50's) with no symptoms then it is more than likely cancer'. Please do some more research as I believe the odds are only around 30%. When I told the urologist that I wanted to wait until my PSA was over 10 he did mention that I would not then be eligible for Brachytherapy. I accept this. I wish you all the best.
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    • Posted

      Perhaps, but things like enlarged prostate, infection, lots of bicycle riding etc will be the cause in a lot of raised psa levels. I knew none of these were the cause. I think I read on this on a uk site. If I find it I will add the link. 
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    • Posted

      Hello David,

      I respect both your views and critique of my post,  I nonetheless urge you to at least have a biopsy ! 

      Whether or not you realise it,  you are currently gambling with your life.

      I maintained the very same ' informed ' / philosophical / intellectual / seemingly brave approach as yourself for about eight years.

      I ignored obvious signs of disease for the past five years.  I cancelled appointments.  I put it out of my mind and became very adept at ' coping ' with a gradually increasing range of symptoms.

      Like you,  I both clung to statistical data which I interpreted to suit my mind-set at the time and interpreted the seeming ambivalence towards my stance of certain Practitoners  ( who are too busy to argue ) as underscoring,  the worth of my own point of view that :  ' it might not be '.

      The reason we cling to that hope,  is fear.  Fear of putting ourselves forward for procedures that will in the short term inconvenience us and which might,   in the long term,  debilitate us.  And of course we are dealing with the concept of a possible and unknown degree of impairment of ourselves,  as being vital,  attractive and sexually active Males.  Heavy stuff.  But not as heavy,  I assure you,  as living with untreated Prostate Cancer.

      And again,  how will you feel if having decided to not take any pro-active steps to prolong your life,  your disease worsens and your life-expectancy is drastically reduced;  only to find out later that the expected future advances in Medicine could have preserved both the quality and duration of your life.

      Not wishing to be provocative,  but I wouldn't mind betting that you know next to nothing about dying of untreated Prostate Cancer.

      I would recommend that you make an appointment with an Oncologist to ask him/her that specific question. 

      That is what it took for me to change my mind and present myself,  finally, for treatment and by which time,  I had,   ' a significant amount of moderately aggressive Prostate Cancer '.  

      The longer you leave it,  the harder they have to hit it and the worse you will feel.

      And all of that is still not as bad as dying of untreated Prostate Cancer.

      I have had my life saved and I am trying to encourage you, to save your own.

      Regards

      Dudley

       

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    • Posted

      Hello David.

      Did to you think to ask,  or was it explained to you why,  if you had a PSA  of  >10,  you would not be eligible for Brachytherapy ?

      The reason,  as I was given to understand it,  is that they know with a reading of  >10 your PC will have 1 ) changed the shape of your Prostate gland making it difficult to successfully implant sufficient seeds to be effective and 2 )  that in all probability by this time your PC will have already escaped the capsule  and be microscopically present in surrounding tissue whether or not they can detect it by scans; and would in so doing have created a greater area of disease than Brachytherapy can effectively eliminate.  

      Unchecked,  the next barrier for PC is the lymph nodes,  which may provide a window of opportunity for treatment to eliminate it.  Either by  surgery, radiotherapy or chemotherapy.  Unfortunately,  nothing else actually kills PC cells. 

      After that the body has no natural physiological barrier to arrest its spread. And the aetiology of the disease is that it will definitely spread and cause tumours in predominantly : - the bladder,  the bowel,  the bones,  the brain and the lungs etc., unless can be suppressed by hormones.  Additionally diet and lifestyle can also slow things down, but not cure.

      Early intervention is the Gold Standard.  If opportunities for it are lost then  you are thereafter fighting a continuous rearguard battle, with no hope of eventual success.

      Regards

      Dudley

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    • Posted

      I do not deny that fear is an important factor and if there were any course of action I could take which would improve my chances then I would take it. Unfortunately, I am not convinced that invasive treatment will improve my chances. I have just re-read an article in the Telegraph and I give the conclusion - Conclusion The annual mortality rate from prostate cancer appears to remain stable after 15 years from diagnosis, which does not support aggressive treatment for localized low-grade prostate cancer. So intervention will not improve my chances but will definitely give me a lower quality of life. There have been many studies undertaken and none seem to conclusively prove that intervention has any affect on long term outcome. I was told that by waiting until my PSA >10 I would lose the opportunity of Brachytherapy but I do not think I would have opted for that treatment anyway. I have agreed to have an MRI and will monitor my PSA every 6 months. Any reading over 10 will be a trigger for a serious reassessment but until then I am going to try and enjoy life.

      Thanks for responding and I wish you all the best.

       

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    • Posted

      But David with respect,  you simply do not  know whether or not you have PC.  Athough, ( and please be assured I take no pleasure in this ),  I believe that you do and let us for arguments sake,  assume that scenario ...

      Then,  there are two more things you do not know. 1 )  whether it is low grade and  2 ) whether it is localised.

      Also Regarding MRI scans,  as I have been given to understand it,  they do not reliably show lesions less than 2mm.  Which is why PSA is regarded as the clearest indicator and biopsy,  the most accurate prognostic determinant.

      With these as unknowns,  you are denying yourself the assurance of having made an informed decision and accordingly,  I'm not sure you are going to be able to obtain the detachment and serenity you are striving for.  You opened your post by saying you have been 'agonising ' for a year or so.  That's a pretty strong word and I readily understand that you are not over-emphasising.

      Regarding the varous invasive quantifying and qualifying tests that are occasionally necessary in establishing an individual's treatment protocol for PC,  incidences of resultant infections and/or other chronic complications, are extremely uncommon.

      Regards

      Dudley

       

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    • Posted

      I have just been reading the YANA (You are not alone) website which is a very interesting resource regarding PCa. There is a link to a page 'PSA 101' which has tables of PSA readings and incidence of PCa. This extract is from the section 'PSA readings above 4.0' When the PSA test was approved and introduced in 1990 a reading of higher than 10 ng/ml was regarded as one that should be investigated further. This figure was subsequently reduced to 4.00 ng/ml, which is regarded as "normal" in most countries and by most medical people. In the US there was a move to reduce the limit to 2.60 ng/ml or even to 1.25 ng/ml, and some doctors use these levels to define 'normality'. On the other hand, one leading expert physician feels that any PSA result under 12 ng/ml is not worth being concerned about, unless there are other symptoms. Another theory is that since there is a correlation between age and PSA levels - they tend to be higher in older men - a table of 'normal' levels linked to age should be used. Between 25% and 35% of men with a PSA reading of between 4.00 ng/ml and 10.00 ng/ml will be found to have prostate cancer. In the majority of cases the elevated reading will be due to some other cause. It also shows, disappointingly, that there is still a high incidence of PCa at levels below 4.0. Another interesting fact is that most laboratories will only guarantee accuracy of 80% - not very reassuring! All the best....
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    • Posted

      Yes,  the statistics are open to many interpretations.  Error would be to think that only what you choose to believe,  applies to you.
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    • Posted

      Can I ask what treatment you think is best please? We thought Brachy best, but I see you put proton, I don't know much about that one, I don't think it is available everywhere in the uk. Just 4 hospitals. We are not lucky enough to live near any of those. I would love to read more really on different treatments, success rates etc but from the people that have had them.
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    • Posted

       If you re-read his posts I think you will find ( and no offence to him is intended by this observation ) that David is not at all the right person to be asking any questions of,  regarding the treatment of Prostate Cancer.   Let alone,   which course of therapeutic action would be be best for any particular Patient.

      Personally,  through denial and procrastination,  I missed  the window of opportunity for Brachytherapy as a treatment of choice in my case.  My Urologist had wanted to prescribe it for me because it would have meant one two-day visit to Hospital,  against two months away from my country home to have EBRT x 42 at the State's major Teaching Hospital.  So, incidentally there is the convenience aspect to it.  

      Therapeutically,  Brachytherapy is capable of and does deliver,  the same results as EBRT.  There is generally more initial discomfort post-procedure,  as against EBRT.  But it is a ' one- off ' treatment and down the track,  the side-effects of it are considerably less than those of EBRT.  One thing less attractive to some however,  is that loss of normal sexual function is more common after Brachytherapy than EBRT.   Also, a safe distance needs to be maintained from pregnant women and small children,  for about 9 months I think. ( No cuddles with Grandpa would obviously be a tough one ).

      if you Google ' Brachytherapy ' there will doubtless be an extensive range of Articles and Papers on the subject.  My Urologist told me that there are continuing advances in the field of Brachytherapy that make it increasingly favoured,  over EBRT.

      I hope this may help.

      Regards,

      Dudley

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    • Posted

      Yes, brachy is the one we though best, though the brachy chap is in favour of leaving it for a while, I just looked up the psa and it was 3.8 last time and being done again tomorrow. He is worried about the ED I am 15 years younger than him, but it doesn't bother me so much, he has a much higher sex drive than me and I am worried about how he would cope mentally. Yes I also read about the children after Brachy, our youngest child is only 5 years old, but was assured it would be fine. We were told ssexual function was equal after brachy or radio therapy. If he had the radio therapy he would not need hormones first, which is good. I probably should ask others on here their experience as this was originally someone else's post! But interesting to hear what others say. Thanks.
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    • Posted

      Hi alfred5,

      I am reminded about what my Urologist said to me when I was expressing similar concerns during my own period of deferring treatment ( for fear of losing sexual function ) and further procrastinations,  viz :  

      " Oh,  you shouldn't be worrying about that ... the Cancer is going to be taking care of that for you anyway ".

      And then my thick uninformed male mind went ...' Oops ! '. 

      You' ve got to laugh,  haven't you ?

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    • Posted

      Well yes, but ours is saying treatment may not be needed for 10 years, so enjoy it during that time and don't have the treatment, but we are too worried about leaving it. He said why cause ED and other things if treatment isn't needed. If it was definitely needed then of course that is most important than worrying about side effects. I have read an article on google about a study done in Cambridge on several hundred men, all were told they had slow growing cancer (as we have) they all opted to have the prostate removed and over half were found to aggressive forms, this article has definitely put us off the waiting part.
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    • Posted

      I don't the medics really wish us to know that. It took me quite a while to work out that the prostate is central to our sexual activity and to our effective fertility. It is in short our orgasmic powerhouse.

      Instead we are given the impression that it is a triublesome thing the impedes urine flow and goes cancerous with age.

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    • Posted

      Firstly I'd like to compliment you on the sterling work you are doing on behalf of your Family.  P C is undoubtedly a very difficult subject.  Getting one's head around the various permutations of its possible development and the complexities of the different treatment options takes both time and effort ; and which undertaking,  by its import,  may eventually become emotionally stressing.  

      I will accordingly try to keep this short.   In my case in retrospect my Urologist considers I have probably had  P C,  for the past 20 + yrs. ( 71 now ).   During the last five years my PSA  increased 2&1/2 times to 10 ;  indicating that it was no longer slow-growing.  During this time DRE ultimately revealed induration of about 50 % of mass.  And by both denial and procrastination,  I had allowed windows of opportunity for a total TURP as first choice treatment and  Brachytherapy as second,  to close.  Within the  12 months preceding treatment ( 31/3/14 ) ,  my ability to maintain an erection was significantly impaired and production of semen was down by 2/3rds.  Urine flow had become both increasingly difficult and reduced and  Frequency quadrupled.

      Consequently by procrastinating I have reduced my chances of surviving the next 5 yrs by about 60%.  At age 71 and with no dependants,  this is not a disaster. But were I 15 - 20 years younger with a loving Wife and a beautiful young Family,   I think I might have trouble arguing,  that I had not been irresponsible.  This observation is not meant to be judgemental of your Husband who understandably cannot currently easily see past the Great Unknown  I. e. what the huge and unthinkable potential loss of his ability to adequately  express his love for you might mean.  Which if there is any silver lining is in turn,  a compliment to you.

      Also in weighing up the treatment / non-treatment equation it should not be overlooked that in the current economic climate,  it now suits the Government to encourage watching and waiting.   Suffice to say that I have noticed that,   if any Public Figure. ( Poli,  Film Star,  ex Sports Great etc ) is diagnosed with early Prostate Cancer,  they are usually operated on the next day ! ! 

      Best wishes

      dudley

      The dilemma is of course that like rust,  P C never sleeps. 

      I wish you all the best

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    • Posted

      Hello, yes thanks for that. I agree with you. My husband is now saying perhaps he should let nature take it's course!! He is that worried about "the dreaded" side effect. PSA test done yesterday (results later this week) we are seeing the Brachy consultant next week. Last time we saw him he said to wait and think about it for a few months. I would love to read more people's experiences really, rather than statistics. I also read that after treatment it is 30-60% likely to return in 5-10 years, on return it is usually in an aggressive form, this also makes you wonder whether to hold off treatment to start with. Father in law also had prostate cancer, diagnosed in his mid 70's, he never had treatment and died at 93 (not from cancer) But his son has been diagnosed at a much younger age. (no symptoms, it was found in a general health test) At the end of the day it is his decision not mine. But prolonging life is most important to me. My husband jokes and says he would rather live 5 years and enjoy the use of his manhood than 10 years without. He knows though that it isn't a joke. dudley 70181 please can you tell me why you would have chosen EBRT over Brachy? We wondered whether to have EBRT but were told there was more chance of impotence, bladder and bowel problems with EBRT. Have you read something else? We are an hour and a half away from the hospital so lots of trips would be hard especially as my husband works from dawn to dusk every day, but he would have preferred that to an aneasthetic, also the oncologist said he would need 6 months of hormones for EBRT, but the Brachy man said hormones are not needed which again swung in favour of EBRT. But  when we were told brachy best to avoid side effects we swung that way again. It is all very confusing. We do know 3 people that have had brachy and one that had EBRT. All said fairly straight forward for both treatments. Thanks for advice.
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    • Posted

      Hello, have you got a link to the aricle you mention above please? Sorry I seem to have hijacked your thread! Thanks.
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    • Posted

      Hello Alfred5

      I chose IMRT over surgery. Brachy was not an option for me. If you would like my comments please ask. I shall be delighted to tell you how Ht and RT are going for me. Of course the whole story has yet to be told.

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    • Posted

      Thanks. At the moment hormone therapy is not needed. I had exactly the same hormone injectons myself 15 years ago that the oncologist said he would need (zoladex) But thankfully the Brachy man said not needed. I didn't enjoy it at all. infact I refused the 6th month injection. (I had nothing life threatening so feel it was ok to refuse!!)
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    • Posted

      When my PSA first began to climb I was offered a TURP,  which I declined because of the guarantee of retrograde ejaculation,  let alone the possibility of impotence.  So important did I consider it,  to not appear unmanly.

      Time went by,  my readings worsened and symptoms started to develop  and finally I agreed to Brachytherapy.   But to be able to have Brachy, I firstly had to have a mini-TURP and bladder neck incision (BNI ) because I could hardly urinate.  

      Then, the Urologist who operated on me was said by his Dept Head, to have taken too much of my Prostate gland away and left not enough room for the insertion of the Brachy seeds.

      And so I was offered and accepted  EBRT x 42.  The good news is, I am not yet impotent.  And my libido is O.K. so far.  But they do say that over the next two years I will most probably lose both. 

      Also, I now recall this conversation :  Before starting  EBRT  I asked my Consultant what my prognosis was, with treatment ?  He said " You'll see 10 yrs, but not 20 ".  ' Oh '  I said ' and what about untreated ?'   "  you'll be Dead in 3-5 yrs " He responded.   ( And apparently, it is  not a nice way to go ).

      I sincerely wish I could be of more practical assistance,

      Regards 

      Dudley 

       

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    • Posted

      The comments do not seem to run in order so I cannot see my comment above. Please let me know what it referred to and I will provide a link - I did not provide a link originally as the comments are then moderated. I have a huge folder of website links so I must have one to support almost anything. Anyway, let me know and I will provide.
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    • Posted

      Hi Alfie,

      Yes, with all the possible permutations of effectiveness and risk it can be and is at times, a rather confusing subject.

      And in that vein I just wanted to clarify that I do not think I have recommended EBRT over brachytherapy.  I try to be as well informed as possible but nevertheless rely on my Consultants opinion about what would be best for me,  whatever that may be.  Having denied myself Medical care for about 8 yrs,   I have given them a ' damage limitation ' scenario to deal with anyway and I don't feel it would be right to give them a hard time now. I know they are really thinking about my case and doing their absolute best to help me.  Since submitting myself for treatment I have,  apart from the inevitable delays in the Public Health Service,  received excellent care.

      And I'm sure I've read somewhere that having confidence in one's Medical  Team is psychologically very important in easing the entire experience.

      Well,  your Husband's latest PSA result is imminent and subsequent to that,  your Med Team will be making recommendations about ' where to from here'.  Providing they know all of the information which is pertinent to your Family's collective dynamic, I would think that being guided in the course of treatment by what they recommend,  would be the way to go.

      Best wishes

      Dudley

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    • Posted

      Hi Alphie,

      May I pick up and endorse Dudley's last point, about ensuring the medical team know and acknowledge your family dynamic. This is such am important aspect and as it can change subtilly as well as grossly over time needs frequent re-articulation. 

      In my case the urologist did question me about my hopes and fears and family needs and took them into account when making his recommendation. My oncologist was late to arrive and in a tareing hurry. She made no reference to my hopes, fears or needs. Her recomendation happened to meet my hopes for agressive treatment and I concurred. I none the less thought her approach dangerous and took the matter up with my GP. She will arrange for a change of oncologist probably after the review of my present treatment. In addition my GP is monitoring my care through treatment and has augmented prescriptions and pressed the radiotherapy team to get me catheterised when the radiotherapy team seemed content to leave me to struggle on with frequent agony day and night and chronic sleeplessness. The underlying point seems to be that only the cancer was being addressed and needed the GP to give my treatment the needed holistic viewpoint. I do not think this is ideal but illustrates the difficulties that can arise if the personal and family dynamics are ignored.

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    • Posted

      Sorry it has taken me so long to respond to this. The best assessment I have found of treatment options is www.yananow.net . There is also a section for the partners of those with PCa so this may be of interest as well.
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    • Posted

      Some 'professionals' really have scant regard for their patients. See my original post - the urologist was about half hour late so every patient was given a very restricted amount of time. When I asked the receptionist where he was she said 'Oh, Mr XX, he's always late'! Another patient commented about the arrogance of the man that he felt he was so important and the patients were so unimportant. That's is why I saw a private urologist, to have the time to discuss things.
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      The medical team told us to leave it as it may not need treating for many years, he said it will need treating at some point. He told us to return in 6 months while we think about it, I said I didn't think I could cope with 6 months of worrying, so he gave us 3 months instead. Appointment next week. We will need to make a decision whether to continue to wait or have treatment. He also said that if we had medical insurance they would not pay for treatment yet as not necessary. So a tough decision ahead.
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      Hi Alfie,

      I've just lost an half hours typing of a considered reply to you.  dammit  ( yes, I'm slow ).

      So in a nutshell then : 1) please let us know this weeks PSA reading and the velocity.

      2) re express your concerns to the Med Team

      3) follow their advice.

      4) May I recommend both you and your husband try to accept the condition,  rather than trying to fight it intellectually and with such ( I would have thought unsustainable ) vigour.  Calm acceptance is not defeatist,  but quite the reverse.

      Good luck.  I am confident I will be speaking for many others when I say how intelligent and brave you have been in taking on both the research and the diligent soliciting of other Patients' experiences.

      Best Wishes,

      Dudley

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      Thanks, never had velocity done, I know he did have a size thing done ( forget the name) and it was right in the middle of the average size?weight and well below the average for his age.

      The other half has done no research and won't read anything either! He read the hospital paperwork. Seems me worrying a lot more than him! At the end of the day it is his decision so I will go with what he chooses. Yes it has been accepted, it is just a tough decision what to do next, especially with no symtoms (apart from those caused by biopsy) Will let you know psa. It is available from today, but he says there is no rush to phone up...leaves me in suspence.

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      Yes thanks david. had a quick look through, our consultant told us not to look at anything from america, though fairly similar to uk. the statistics must be similar. The only difference really is they are very much for removal, whereas I think it is avoided in the uk.
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      Indeed. Follow the money. There is an interesting book (can't remember the details) by an american ex-GP where he examines the undertreatment of poor US citizens and the overtreatment of rich (i.e. in a health scheme) americans. That is why there is a bit of a backlash there. My consultant also mentioned that there is a serious overtreatment problem in the US. However, I do think some of the statistical data is relavant to the UK. All the best.
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      May I add to Dudley's point 3). 

      Follow their advice once you have understood and can remember the reasoned arguments for giving that advice. 

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      Yes,  it is ironic how our BlokeyThing of showing less apparent concern ramps up anxiety in those who care about us.  No doubt we consider we keep things more manageable by downplaying it all.  And of course we are not willing to impair our individual concepts of manliness.

      Your Husband's ambivalence about you phoning for results seems to predicate that he has ' had it up to here ' with it all,   and/or it is possible he may already have made his mind up about what he wants to do regardless.

      Yesterday in a longer email that zeroed itself when I fell asleep over it,  I asked you if you could remind us please what your Husband's Gleason Score is?  That bit of info both completes the diagnostic picture and helps us better understand attitudes.   All with a view to being as helpful as we can, whilst respecting sensitivities and boundaries.

      I am reminded that I was told each case of P C is individually different and therefore unique. For example :  Yesterday I had my 6 months post treatment review after 42 EBRT's.  My PSA is down from 10 to 2.2.  The Path. on a small urethral iatric lesion/ tumour which was interrupting flow and had been removed on 3/12,  was clear.  Apparently an urethral tumour is extremely rare and in all the collective Practice exposure of my Uros/ Oncos and Nursing Staff,  no-one had ever seen one before.  Go figure! , as they say.  

      I suppose the point is that whatever comes up they deal with it,  with absolutely competent Professionalism.  Yes,  like all NHS's the system here in South Australia is creaky and subject to delay but the people involved,  from the Top Man to the Bookings Clerk are, in Uro/ Onco /Rad at least out of the top drawer. I was told they hand-pick them.  They have helped me to appreciate that as opposed to being gone,  untreated,  in 3-5 yrs and under very unpleasant circumstances,  I have a good chance of seeing 10 yrs with overall,  a good quality of life.

      All I needed to do was accept that irrespective of my Article reading,

      ' Forum Knowledge ' and fear of side-effects ,  they knew best.

      Kind regards

      Dudley

       

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      Hello. Gleason score was 3+3 though when we got the biopsy results the nurse called the Dr out the room, he came back asking for my husbands Date of birth, he then said he had someone else's notes. Then when we saw the Brachy chap he told us that he didn't have the biopsy results to look at, but he had the biopsy results from a few years back...there was no previous biopsy, so all that makes me a little nervous! I wondered if he was checking someone else's notes? He just said psa of 3.7 was normal (which it isn't) he said that if he had been our urologist he would not have suggested the biopsy, said he was amazed it was found so early. Apparently he is the top man, but makes me wonder. We have relatives in Australia and it sound a lot better over there, though I know you have to pay for it.
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      No Alfie,  we don't .  Not under the NHS.  Not yet anyway.  And the fact that it's free is even more incredible.  Here, you are seeing the best Private Doctors anyway.  Even though they are Seniors, Heads of Dept,  Professors and the like... They all have Private Practices and you would be seeing the exact same person if you had Private Cover.  The difference is. ...waiting times and more flash surroundings.  And I guess the Public System would be more timeously effective if these Guys were not off half the week or more,   stashing up the cash Privately... But what it does mean is that they are all happy bunnies,  teaching their Teams in the Hospital setting,  and you really do get the best of the best.

      We don't know your Husbands name but it sounds like there is possibly more than one of them,  hence the D.O.B. check.  By now, they should have Him clearly identified.  Put the previous experience behind you. Get them to confirm to you that they now have it right and take it from there.

      This might make you laugh :  About  5yrs ago I had a varicose vein ( the Grand Saphinous ) removed. On the morning of the op. when the Surgeon arrived in my cubicle to mark me up,  he was quite bewildered  " I've just drawn you up on another Patient's leg"  he said. " I asked the bloke if he was Mr Haydock and he said ' yes '. It was only when we were looking for him under his own name and couldn't find him,  that we realized there was something wrong ".

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      Sorry,  I additionally meant to say that the Gleason is on the cusp. Just one more digit,  especially on the first figure and you would be in a lot more trouble and with a whole different ball game treatment and prognosis-wise.

      In your situation and with what I know now,  I'd be doing something about it,  but without panicking,  ASAP. 

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      Well, the psa has shot up. It was 3.4 in June, 3.7 in October now 4.9. So I guess at least we now now not to leave it! Seeing Brachy guy next week. We will ask for treatment. Funily enough they were just speaking on the news about waiting times for Brachy in Cambridge, apparently it is 7-9 weeks. So will have a wait yet, which will bring it right when calving season starts (meaning lots of staying awake at night and pulling calves out!) Poor man will be exhausted, I can get up and watch for him, but I can't assist with delivery!
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      Dear Alfie,  

      i am sorry to hear the latest news.  In view of the timing as regards calving if you have to wait 7-8 wks,   is their anyway that as a primary producer or whatever it is called,  special dispensation might be obtained to allow your  Husband to be treated sooner.

      Perhaps your GP can go in to bat for him and your local  M.P. too. There would not seem to be anything to lose by trying. 

      My thoughts, prayers and hopes are with you for a good outcome once you can commence treatment.

      Best wishes

      Dudley

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      We wouldn't go to those lengths. But we won't know how long the wait is until we go next week. We will certainly say that the sooner the better. The initial wait from diagnosis to seeing the Brachy chap was 6 months, so no hurry on the nhs! Though we have a friend that was told he needed treatment straight away as his cancer was on the point of spreading and he was done a week later, so I think the nhs can move quicker if need be. But there seems no rush with us.
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      I agree with Dudley and would like to add my tupnce worth on two counts

      (1) Blokey thing. Where prostate cancer is concerned being the tough male is a very hazerdous stance as well as very unkind to our loved ones.

      (2) The forum is very good for encouragement and priming us to ask more of the right questions. It does NOT arm us to blaze a trail that the professionals would not recommend.

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      Yes Alfie sooner rather than later will be best if you can achieve it,  though I sense your Husband may prefer to get through the calving season rather than have the procedure say,  right  in the middle of it.  

      So the Lottery of life with Prostate Cancer begins.  For that is what it is for all of us, I'm afraid. 

      At least the insidious exhaustion that indecision creates will now dissipate and you should both start to feel a bit better.  You have done incredibly well on His behalf.   I marvelled at yourself ... a Farmer's Wife and Mother of three,  yet still finding the time and energy to research on-line and evaluate all the information ( and some mis-information ) that came your way.

      It is that spirit  together with your Husband's stoicism that will see you both overcome the present circumstances to good effect.

      I wish you all the best and would recommend that you now give yourself a well-earned rest from Forums.  We are still likely to be hereabouts,  if you feel like you need a chat further down the track.

      Best Regards

      Dudley

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      I endorse what Duley says about forums. Indeed I have found them of such value I am never away for long. And along with Dudley I saute both you and your husband and hope to hear good things about you in the future.

      With my very best wishes for a good outcome,

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      Hello, thanks. I wish we had put his name for treatment 3 months ago now, rather than waiting like the chap suggested, but he said treatment would ruin Christmas, but it is the quietest time on the farm. Calving season starts end of Feb, then we are getting into hay making time, then harvest, so never a good time! Thanks for advice. 
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      Alfie,  you both did the best you could with the information and advice you had to hand back then.  Which,  combined with the attendant emotions was a lot to get your heads around both individually and jointly.  So, no room for self-recrimination there. 

      The important thing now,  is that you are getting on with a treatment plan so soon as it can be arranged ;  and I still think it would be a good idea to have an Advocate(s) making representation to the Hospital,  in order to have your Husband's treatment expedited.  ( query : G P.,  Farmers Union,  Vicar,  M.P. etal ).

      Bear in mind,  that although no one Patient necessarily wants to promote themselves  above another PC patients are primarily Aged,  or almost there.  I can't think that if we were consulted,   there wouldn't be one of us that would not willingly give up his treatment slot for a young-ish active Farmer with dependants.  After all we all more or less,  have had our lives.  So I'd say one more time  ' Go for it ' and try and get the procedure done in a time window that best suits the running of the Farm.  

      Surely there has to be a case for it ,  doesn't there ?

      The only thing currently that should be biting a bullet,  is the fox in the chicken run.

      Kind Regards,

      Dudley 

       

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      P.S.  At my treating Hospital,  the Rad/Onco Dept have treatment slots reserved daily for Ward Patients in pain and Others such as your Husband.
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      I heartily agree with Dudley. Where timing is important to the relative young man still in work, the older retirees would be happy to give way. Wishing you all the best in your advocacy for an optimum early slot for your treatment.
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      We were told that all the brachy patients arrive at Midday on the Tuesday, so they do the same routine weekly. Then I guess you wait your turn. We were given a sheet saying Tuesday 7am light breakfast and then "clear out" tablet. 9am no more food and 12pm arrive at hospital for check in, same sheet of paper for all patients. Not sure whether we will do EBRT or brachy, we were told brachy best. So watch this space! (though I have hijacked someone elsse's thread!)
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      It sounds like Brachy. As to the sheet, I was given three sheets, The second and third with changes.Those changes were not at my request so I presume that others needed changes which were acceded to. So if you need the date changed to a different week I would say try for it. The worst would be no change which is just what will happen if you do not ask.
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      I may have muddied the water a little.  The observation about time slots in my PS referred only to EBRT appointments.  Brachytherapy as I was given to understand it,  is a one-time procedure carried out under some form of anaesthetic and requiring a one to two day stay in Hoispital.
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    • Posted

      Hi Dudley,

      I have JUST been diagnosed with PC , having had 4 UTI.s in one year I went to the consultant for a camera down the pee pipe, found a small blockage, but it moved with the camera, whilst there, they did a digital exam, and found a slightly tender prostate, booked me in for a biosy, I know am told I have a gleeson of 3+3, with a psa  of 13.9 slow growing, what do you think my alternatives are please

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      Hi Tworiversuk,

      I am very sorry to learn you have joined the PCa club. It is not too exclusive and none of us wish to be a member. Yet, if you qualify for membership it is quite the most effective resourse. 

      I shall hold my comments until Dudley has responded. I probably will have nothing to add. So I will take this opportunity of assuring you of my (informed and experienced) heartfelt sympathy and ongoing support whenever you need it. If I am anything to go by, that will be quite frequent. 

      I wish you the very best in choosing the most effective treatment for you and an excellent, trouble and anxiety free outcome.

      George

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      Hello 2Rivers,

      I'm sorry to hear about your diagnosis ;  but as you can tell from the Forums,  it's a not very exclusive club which you have unwillingly joined.

      Although this may seem like a cop -out,  it wouldn't be either right or proper for me to suggest alternatives.   Even if I knew:  ' alternatives to what '.

      Because,  you haven't disclosed your age nor a variety of other clinical information that would be essential before even a Medico could arrive at any definitive treatment options.

      This is not to criticise you,   Please don't think that.   This is a stressful time for you.  As with all of us,  life for you will never be quite the same again.

      Once you have established the dynamics of your situation on this site or any other,   I am positive there will be many experienced people more than willing to ensure that nothing obvious nor detrimental is overlooked.

      Wishing you all the very best.  I would have hoped to have been more use to you even at this point.  But if you come back on with more background and detail I am confident there are many on this site who can help ramp up your confidence and offer guidance.

      Dudley

       

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    • Posted

      Just a quick P.S. ... Might it be a good idea to open a new discussion with your case,   rather than patch it into a discussion on which there have been over 120 posts ?
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      Our doctor said this to us same exact words.  I know they believe it!! Johns Hopkin came out with a statement saying wait and see is concruent with the other options.  Not sure I agree but respect you
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      Hi Mary,

      Did you mean to address this Post to me or was it more intended for David 41904 ?    If it was me,  can you help me out a bit more by advising which Doctor's statement you are referring to ?

      Thanks

      Dudley

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