Prostate cancer (en anglais)

Témoignage

15.03.2004

On 24 July 2002 I learned that I had prostate cancer. I was 62. I thought it might be helpful to others who are (or fear they may at some point be) in a similar situation to set out the chain of events leading to this diagnosis as well as my response and the reasons for my choice of therapy.

There are more therapies available for combating prostate cancer than any other form of cancer - this is both bad and good. One writer refers to the “Behandlungsdschungel” (“treatment jungle”). Decision-making is extremely difficult as a result. If this note is helpful to any one facing the agonising choice "what to do?" it will have been worthwhile.

At the end of 2001, I seem to have suffered a breakdown in my immune system that led to a series of viral infections, of which the worst was viral myocarditis in February 2002 (five days in intensive care, with a cardiograph that revealed nothing amiss). Blood tests taken with a view to determining the cause of these infections revealed a PSA level of 12.3 in March.

My family doctor recommended seeing a urologist to get a specialist diagnosis of the reasons for this rise since the last measure of PSA: 4.5 in November 1999. Given the previous sequence of viral infections, he suggested Prostatitis as one possible explanation, and, while I waited for an appointment with an urologist, I took anti-inflammatory antibiotics. In June the PSA had fallen to 7.3.

The urologist found no palpable evidence of a tumour but on 15 July he undertook a biopsy of the prostate that revealed a Gleason score of 3+3 in the right lobe only. He recommended a radical prostatectomy.

The news that I had cancer was a profound shock and my immediate reaction was to agree with the urologist that it had to be taken out as soon as possible. We agreed that the operation would be on 6 September (subsequently cancelled, for the reasons given below).

At no point did the urologist explain in any detail:

  • the clinical results of the biopsy or their precise meaning (I had to ask for a copy of the biopsy report and interpret them for myself);
  • the specific nature of prostate cancer as compared to other better known forms of cancer;
  • the various therapy options available, including doing nothing, and the pros and cons and possible consequences;
  • the available statistics on success rates and secondary and post-operative effects of the possible therapies.

Within hours of receiving the diagnosis, I had begun to search the Internet for more information about my condition. Among others, I found the following sites were the most helpful:

It is also worthwhile registering with Medscape in order to access the wealth of information in their database: http://www.medscape.com.

I learned the following:

  • The first step in determining whether you may have prostate cancer is to obtain a PSA value from a routine blood test – your general practitioner will then advise whether you should see a specialist;
     
  • If you have had a biopsy with a positive diagnosis of prostate cancer it is essential, before you can even begin to assess therapy options, that you know your PSA, your Gleason score, whether the biopsy indicates cancer is in both lobes of the prostate (or only one) and whether there is any chance that the cancer has spread beyond the prostate capsule;
     
  • PSA is affected by the biopsy and a blood test should be taken immediately before the biopsy (in my case it was not and I was unnecessarily alarmed by a post-biopsy high PSA);
     
  • "By age 50, about one-third of American men have microscopic signs of prostate cancer; by age 75, half to three-quarters of men will have some cancerous changes in their prostate glands. "(US Department of health and Human Services, see 1 above);
     
  • "Only 8% of men in the US will present with clinically significant disease in their lifetime affecting their quality of life. Only 3% of all men in the US die of prostate cancer. In no other human cancer is there such an enormous disparity between the very high incidence of malignancy microscopically and relatively low death rate": (see 3 above);
     
  • "Prostate cancer has an astonishingly slow growth rate, with half of all cancers requiring over five years to double their size; breast cancer, in contrast, doubles its size every three months": (see 3 above);
     
  • There are no reliable clinical trials, comparing like with like, that can show the relative advantage of one form of treatment over another. The literature is characterised by a (sometimes unseemly) partisan warfare between proponents of different forms of therapy;
     
  • For French speakers, the best comparative study I came across is :

    "Les traitements du cancer localisé de la prostate" (January 2001, see 2 above). It concludes "Lorsqu’une décision de traitement de cancer localisé de la prostate a été prise, il n’existe pas d’argument formel de supériorité d’un des traitements par rapport à l’autre. Le patient doit avoir au moins 10 ans d’espérance de vie pour tirer un bénéfice du traitement par radiothérapie externe localisée ou prostatectomie radicale....... En raison de ces incertitudes et des séquelles possibles des différents traitements, le patient doit être intégré dans la décision thérapeutique après information sur les avantages et inconvénients de chacune des alternatives. Le recul des traitements par curiethérapie est encore insuffisant ....... pour être proposé au patient comme l’équivalent des traitements de référence. ........ Les autres approches telles que cryochirurgie ou ultrasons focalisés restent du domaine de l’expérimentation."

    (Once a decision has been taken to undergo treatment for localised prostate cancer, there are no formal arguments in favour of one form of treatment over another. The patient must have at least 10 years’ life expectancy if he is to benefit from external beam therapy or radical prostatectomy...... In view of the uncertainties and possible side - effects of different therapies, the patient must be fully involved in the decision - making and receive information on the pros and cons of each alternative therapy. Because of its relatively short case history, brachytherapy cannot be proposed to patients as equivalent to the "standard" therapies. Other approaches, such as cryo-surgery or high-focused ultrasound remain experimental.);
     
  • Prostate cancer is "big business" and a significant source of substantial income for those who treat it: patients beware! Arguments in favour of one form of therapy over another are never entirely free of self-interest;
     
  • A good urologist will explain most of the above and leave the choice to you ((1) - see footnote at end of text). Use this criterion to evaluate your urologist.


Having reviewed a relatively large proportion of the information on the Internet, I made the following decisions:

  • my preference - with the approval of my general practitioner - was to go for a "minimally invasive" therapy, namely brachytherapy by the so-called "after-loading" technique (in which needles are inserted into the prostate and then removed after a radio-active charge has been administered), rather than permanent radioactive seed implants. The grounds for this preference were:
    • conversations with (and anecdotal information on) a number of persons who had had positive experiences of brachytherapy and
    • my concern about the potential post-prostatectomy problems of incontinence and impotence (various authors and websites give varying percentages for each - I wanted to avoid any risk)
    • this form of brachytherapy can be repeated.
       
  • If I was to have radical prostatectomy, I wanted it done at Johns Hopkins in Baltimore by a Professor, who is generally recognised as the leading prostate surgeon in the USA, and whose operating technique aims to preserve potency.


My local urologist was unhelpful and was even surprised that I would want a second opinion on his recommendation for radical prostatectomy. I consulted the Centre Hospitalier Universitaire Vaudois (CHUV) in Lausanne - who strongly recommended radical prostatectomy, but informed me that brachytherapy is practised in Switzerland in St. Gallen. I consulted by phone a Professor in St. Gallen and learned that they have only just started brachytherapy and that it is not reimbursed by the Swiss health insurance (“Caisses-Maladie”) - at least in part due to opposition by Swiss urologists (perhaps concerned at the potential competition from brachythérapie?).

In France and Germany, there are several centres (all have relatively informative websites) with a fairly long history of brachytherapy: e.g.

  • Institut Paoli-Calmettes, Marseille
  • Hôpital Henri Mondor, Créteil
  • Universitätskrankenhaus Eppendorf, Hamburg
  • Universitätsklinik Marienhospital, Herne
  • Klinikum rechts der Isar, Munich
  • Interdisziplinäres Zentrum für Brachytherapie, Kiel
  • Charité, Humboldt Universität, Berlin
  • Klinik am Ring, Köln
  • Westfälische Wilhelms-Universität Münster

I reviewed the various options in the USA - where there is a considerably longer experience with brachytherapy – but finally decided to look at Hamburg. The website was helpful (http://www.uke.uni-hamburg.de/kliniken/urologie.bck/index.de.html) and one of the Professor qualifications appeared impeccable - the website includes an excellent article (in German) by this Professor, describing and commenting in detail the options for therapy (http://www.uke.uni-hamburg.de/kliniken/urologie/klinPCa.htm). Moreover, since we have family in Hamburg, logistics were simpler for me and my wife than with a trip to the US or another location in Europe. A relative in Hamburg is also a Professor of urology at the Altona Krankenhaus, so a "second opinion" was easily available.

I also made an appointment with a Professor at the Städtisches Krankenhaus München-Harlaching (see http://www.prostatakrebse.de/informationen/pdf/hifu.pdf) to review the experience with "High Intensity Focused Ultrasound (HIFU)", which appeared from a number of articles (e.g. http://www.medhyg.ch/mh/formation/article.php3?sid=21867) to offer the least invasive form of therapy. (N.B. in the light of the Professor’s recommendations from Hamburg - see below - I cancelled the appointment).

Finally, I benefited from the patient personalised advice of another Doctor, a relative of a colleague, who is an experienced urologist in Cleveland, Ohio, and who had been involved in early tests with HIFU in the USA. (this Doctor advised against HIFU as too experimental; on the other hand, he described positive experience with brachytherapy.)

I obtained from a "naturopath/nutritionist" a course of diet supplements and followed assiduously (for over two months) recommendations on a number of websites about changes in diet to tackle prostate cancer; e.g.

... and many others - just search on the terms “prostate” and “diet” or “tomatoes”!

The Prof. in Hamburg noted that I had acquired fairly full information but pointed out his duty as a doctor was to make the following comments ((2) - see footnote at the end of text):

  • start with the assumption that I have perhaps another thirty years to live (I was 62 when prostate cancer was diagnosed);
     
  • choose a therapy that is known to cure the cancer and has a high percentage chance of avoiding a recurrence;
     
  • don’t go for experimental techniques that have no track record;
     
  • while brachytherapy is extremely promising (he agrees that the "afterloading" technique is preferable), he can only tell me what I may expect to happen up to eight years after the treatment - after that he can only speculate;
     
  • the concerns are that brachytherapy does not remove the cancer (which can continue to grow) and that a subsequent operation is more difficult because of tissue damage through radiation;
     
  • he approved my preference for Baltimore if I was to have a radical prostatectomy but pointed out that he himself had worked closely with two other Professors in the USA and follows one of these two Professors operation technique for maximum preservation of the nerves controlling potency; the operation in Baltimore would cost at least twice what it would cost in Hamburg ((3) - see footnote at end of text);
     
  • he does not need more patients and has a long waiting list for operations;
     
  • Hamburg-Eppendorf has a data base on 2,500 patients who underwent a radical prostatectomy in the last seven years - the follow-up over a period of time enables him to give reliable statistics on post-operative continence (97% dry - 86.5% if nerve preservation is not possible - no total incontinence) and potency (56% if both erectile nerves are preserved; 18% if only one nerve is preserved- NB without Viagra) - see http://www.uke.uni-hamburg.de/kliniken/urologie/klinPCa.htm
     
  • don’t go for an operation unless I am certain that the consulting specialist is actually "holding the knife" and has looked carefully at the individual case history of the patient - he fulfils both criteria;
     
  • the choice is mine; he introduced me to the specialist in brachytherapy if I still wanted to go for that; in addition to Baltimore, he also recommended other alternative locations for an operation (in Switzerland, he recommended Bern and Aarau).


A Professor at the Allgemeine Krankenhaus (AK) Altona confirmed that the Prof. in Hamburg is probably one of the best urology surgeons in Europe, and, in the light of my personal situation, endorsed preference for a radical prostatectomy undertaken by this Prof. in Hamburg.

Conclusion

I decided on a radical prostatectomy in Hamburg because:

  • I had confidence in the professional competence and technical skill of the Professor there;
     
  • I was impressed that during the interview he dictated a letter to the Geneva laboratory requesting details of their report on my biopsy and that, in addition, he insisted on doing his own biopsy before operating;
     
  • The biopsy carried out in Hamburg showed that the cancer is "more aggressive" than the Swiss biopsy had suggested: Gleason 3+4; PSA 8.43. (with my agreement, the Prof. actually preserved the erectile nerve on one side only.) N.B. I had hoped that my assiduous dieting might have led to a better result but conclude that the time period was probably too short for an effect to be noticeable;
     
  • I learned a few days before going to Hamburg that one of my correspondents, who had undergone brachytherapy, had had a potentially serious relapse;
     
  • Fairly solid anecdotal evidence (supported by one interview with a recently operated neighbour) of almost negligible problems of incontinence after 6 months.
     

The Operation

If the operation is on day 0, the following was the sequence of events:

  • Day -1 : Check into hospital: x-rays to determine flow from kidneys to bladder.
  • Day 0 : Operation (3hours 25 minutes - loss of blood 2 litres) ((4 - see footnote at end of text): catheter inserted for urinating.
  • Day +1 : Walk for a few minutes in room - tube from stomach (drain) causes significant pain.
  • Day +2 : Drain removed; walk for several minutes outside.