The path I'm taking

Cancer
1

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’.

2

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. 

3

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. 

4

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.

5

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.

6

David, a PSA reading of 7,2 is high and what is concerning is that it is increasing at your age. However, this does not mean you have cancer. I know men with PSA readings over 25 that have had 5 or more biospies with no evidence of cancer. Having said that you should take action to verify what is going on in your body. Has anyone told you about a PCA 3 test which is non invasive. It is simply a massage of the prosate with a urine sample. This indicated a positive reading for me. This pushed me over to have a biopsy. Being a chicken I am, I elected to have the biopsy in the the hospital under general anesthetic. This was a cake walk. Wake up, it is over and go home. Most biopsies in our area are now done this way. I was found to have a Gleason 6 cancer and corrective action was recommended. It was fully contained in the prostate. I took three months to research options and decided on proton radiation therapy. It was done in Florida. I met several men from Europe there undergoing treatment. I am very pleased with the results. This method was non evasive with NO after effects to this point. Good Luck in your travels down this confusing road. One word of caution, make sure whatever decision you make is your decision and not someone else's with their self interest involved.  

7

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.

8

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. 

9

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.

10

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! 

11

That should read simplest treatment*

 

12

I don't think we have proton therapy here in the uk? We only have Brachy, radio therapy or surgery. I have read about it though, shame we don't have more choices. Also can't have biopsy under anaesthetic, unless we pay privately.

13

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.

14

Thanks for your very interesting post. My urologist mentioned PCA3 and said that it is not available on NHS and would cost around £500 (seems a lot for a urine assay!). I guess that is not much to pay for your health though. I am going to request an MRI which is also non-invasive and which has been shown to be at least as effective as a biopsy in detecting cancer (search MRI vs biopsy). I am encouraged to hear about your experience with proton radiation and will certainly consider this when/if my time comes. Your final sentence is very true - there are people on both sides of the treat/don't treat argument who clearly only have their own interests at heart. Really pleased to hear you have no side effects. All the best.

15

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. 

16

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

 

17

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

18

Hi

My situation is different to yours but maybe worth a read!

Early this year (March) I saw blood in my urine, so I visited my GP who then sent me for tests.  My PSA was 4.6 and biopsies were advised, so I asked for a retest.

My PSA went from 4.6 to 5.6 in three weeks.  I was advised to have the 12 biopsies (standard in UK I think!).  Uncomfortable but not agony. The agony was waiting and was told I do have low grade PC (Gleason 6)

I saw a surgeon initially who said forget Active Surveillance and have the prostate removed, Or utilise Brachytherapy.  I then saw a oncologist who went through my options.  All three of the above were discussed BUT my best option should be Active Surveillance!

My PSA is now checked every 4 months and my last one (August) was 4.7 so back to near what it was originally.  I am 48 and have been told one in three men has PC over the age of 50.  My father died aged 67 of an agressive form of PC.

OK, why did I have the biopsies?

To determine if I have PC and if so how aggressive!

So why am I staying on AS?

1 in 5 will be impotent/incontinent.  And my Gleason 6 PC is (at present) indolent so removal is overtreating it.

In my opinion I am doing what is right for myself and my family.  Any advice will be taken seriously, but preferably from a PC oncologist!!!

 

19

Very interesting with obvious parallels to my situation. An increase from one reading to another is statistically unreliable because the test can be affected by so many other factors. I wish my PSA were as low as yours but even with a current PSA of over 7 I still believe AS or WW is the best option at this stage. As you say, one in three men over 50 has PC with the figure rising to 70% over 70 and 80% over 80. This is a very common disease but very few men die of it. Thanks for your post and I wish you all the best.

20

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.