Beat prostate cancer,
Improve quality of life

Roland Muntz, Chair of the Association ANAMACAP
“I used to be irresponsible because I didn’t have enough information, so I let a doctor look after my health, just like my accountant looks after my tax returns and my financial advisor looks after my investments … now I fight for citizen’s responsibility in a health democracy”.
Roland Muntz was given a radical prostatectomy in 1999. In 2002, he founded ANAMACaP (the French National Association of Prostate Cancer Patients), which he now chairs.
He was interviewed by journalist, Nathaly Mermet, on 20 December 2006.
After the virtually immediate recurrence of an aggressive cancer of the prostate for which he had undergone keyhole radical prostatectomy surgery in 1999 when he was 54 years old, Roland Muntz realised how important it was to study and understand his disease, his body, and his health in general. But, health is not an exact science and it is up to each individual to take their charge of their own health provided, of course, they have a minimum amount of information at their disposal.
The birth of ANAMACaP
“If I am the father of ANAMACaP, then Professor Philippe Mangin is its grandfather,” says Roland Muntz. It was in January 2002 that ANAMACaP (the French National Association of Prostate Cancer Patients) really came into being, at the initiative of Roland Muntz encouraged by Prof. Mangin, who at the time chaired the French Urology Association (the Association Française d’Urologie or AFU).
“Patients are becoming increasingly powerful”, says Roland Muntz and he goes on to say that “what patients have to say is often controversial because they start out with a complaint about something that wasn’t done, or wasn’t done properly. But what we say is the truth, and it is not affected by conflicts of interest”. ANAMACaP, which is the only national association in France for prostate cancer, has 700 full members and 1200 associate members. But “we should be at least 10,000, because there are 350,000 patients and 50,000 new cases every year”, maintains Roland Muntz. If that were so, “we could really influence decisions relating to our illness".
The stated aim of ANAMACaP is to help to define a public health policy that saves lives while stimulating the economy.
Backed up by a scientific board consisting of the “heavyweights” in urology, oncology and radiation therapy, ANAMACaP also acts as an interface between patients and specialists, supported by many other stakeholders. “ANAMACaP is the result of my own personal anxiety, an attempt to establish an effective screening system within the public health policy”, says Muntz, who lives under the constant threat of a recurrence. “I could have been screened for prostate cancer much earlier on, and I might have got rid of it altogether”, he says regretfully. A public figure – both local mayor and chairman of a number of committees – though not necessarily any better informed, Robert Muntz believes it is his duty to speak out on behalf of patients.
Information and prevention
According to Roland Muntz, 75% of the population is unaware of the real risk related to prostate cancer … and therefore does not realise that men face mortal danger!
Prostate cancer will kill as soon as the cancer cells spread outside the capsule of the prostate, which can happen via two channels: the lymph – which results in lymphatic metastases – and the blood – which leads to bone metastases. Once this has happened, the mean survival time is no more than two years, and treatments such as hormone therapy and chemotherapy are no longer anything more than palliative, since once it reaches this stage, the disease is incurable.
“Men need to monitor their health, particularly once they are over 45 years of age”, insists Roland Muntz, and “we must obtain a screening system for prostate cancer, similar to that for breast and cervical cancer in women. In the struggle to achieve this, ANAMACaP must enlist the help of urologists and other doctors.
Prostate cancer is a national catastrophe, claiming 10,000 lives each year and “we expect a peak in 2015 when we begin to see cases in the older generation of the grandpa boom”, points out Roland Muntz. Mortality in France has increased by 10% in 10 years, whereas during the same period it has fallen by 25% in the United States.
An organised screening system
It should be remembered that what kills is advanced prostate cancer. What we need to screen for and eradicate is therefore the local cancer, which is still limited to the gland itself. Once cancer has been detected, the patient is conditioned by the people around him who are convinced that prostate cancer is always fatal, although that is not so when the cancer is indolent and localised. Localised prostate cancer that is detected early on can be eradicated by less invasive, and therefore less damaging, methods than radical prostatectomy. Radical prostatectomy is highly aggressive, and often results in impotence and incontinence.
So what is needed is a compromise between the pressure brought to bear on the doctor by his patient, and pressure on the authorities to provide screening.
“If we were to carry out a minimum screening programme with the younger population in mind, with a PSA threshold of 2.5 ng/mL, we could detect most advanced cancers”, claims Roland Muntz. Unfortunately, like any screening test, the PSA test is not perfect, and its specificity is debatable, because even at a level of 4 ng/mL, no tumour would be detected by a biopsy in 75% of patients. However, if the raw PSA data were accompanied by other parameters, such as the free PSA, the PSA density, the PSA velocity and a lower cut-off (2.2 ng/mL), both the specificity and the sensitivity of the test would definitely be improved. It is therefore reasonable to suggest that this type of screening programme could save many lives, particularly since there has been a spectacular fall in the mortality rate in all the countries that have a screening policy. It would seem to explain the drop in mortality due to prostate cancer of 25% in the USA, 50% in Austria, and 67% in Quebec.
We should also note in passing that both doctors and their patients still have considerable reservations about digital rectal examinations. “This examination has a specificity level of only 23%, and by the time a nodule is palpated it is often too late”, Muntz points out.
To sum up, if we had an organised screening programme consisting of "one PSA test per year reimbursed by national health”, combined with specific tests to distinguish between indolent and aggressive cancer, “we would save 5,000 people a year”, suggests Muntz.
Avoiding excessive treatment
Excessive treatment can be avoided by differentiating between indolent and aggressive forms of prostate cancers. However “the main problem is that our doctors do not distinguish between two very different forms of cancer: indolent and aggressive,” explains Roland Muntz. As a result, the more aggressive treatment of radical prostatectomy is recommended, leading to incontinence and impotence in a large number of cases when it is not justified.
Although an aggressive tumour is life-threatening for a young man, indolent prostate cancer will not kill the patient. “This means that in this context, we need to opt for milder types of treatment that are less aggressive, such as radiation therapy or brachytherapy, Ablathermy, or possibly intermittent hormone therapy – androgen deprivation”, suggests Muntz. In this way we could avoid producing numerous cases of incontinence and impotence as a result of treating indolent cancers with radical prostatectomy.
“The problem today is that since we do not bother to distinguish between these two types of cancer – indolent and aggressive – if we carry out routine screening we will inevitably find prostate cancers, and doctors will make men impotent and incontinent by recommending the aggressive treatment of prostatectomy”, denounces Muntz, who goes on to say, “We are willing to accept over 10,000 deaths a year in France as a result of prostate cancer, but we are not willing to accept 100,000 cases of impotence and incontinence”.
The key must therefore lie in distinguishing between indolent and aggressive cancers, in order to diagnose correctly and treat accordingly.
The New Paradigm: a cost-effective approach!
“By saving the lives of 5,000 men a year and increasing their life expectancy by 30 years, we would inject nearly 5 billion euros into the economy”, explains Muntz, based on the Murphy study [Kevin Murphy and Robert Topel, Univ. Chicago, Graduate School of Business, J. Politic. Econ. 2006]. In terms of the national health budget, the PSA screening test would cost 15 euros per year per person, and we could eliminate the prostatectomies that are currently performed as an over-treatment in the case of indolent cancer (one half of cases).
“The French Ablatherm® method, which is both non-invasive and effective, fits in perfectly with the strategy of our new paradigm”, says Muntz, who also points out that it can be used to salvage cases in which radiation therapy has been unsuccessful.
The ANAMACaP campaign
In order to eliminate the invasive treatment of indolent cancer, alternatives such as “Ablatherm, brachytherapy and androgen deprivation could be used”, claims Muntz, who also advocates active monitoring, even if he doesn’t think that “it corresponds to our mentality since we are scared stiff of cancer, even when it is indolent”.
A detailed analysis of the tumour is based on specific data, such as the total PSA, the total PSA/free PSA ratio, the density and velocity of PSA, the PAP, the DRE, the volume of the prostate, the Gleason score and the results obtained using imaging techniques.
An indolent cancer is defined as having:
• a PSA score of less than 12
• a PSA-score doubling time of more than 3 years
• and a Gleason score of less than 6.
All the parameters of prostate cancer can be used effectively by algorithms and nomograms to specify the risks involved and help to choose the most effective treatment.
Contact
ANAMACaP
Association Nationale des Malades du Cancer de la Prostate
17 bis Avenue Poincaré, 57400 SARREBOURG - France
Phone: 00 33 3 87 03 05 34 Fax. : 00 33 3 87 03 31 60
E-mail: info@anamacap.fr
For further information: www.anamacap.fr
John, a patient treated by Ablatherm, said of his experience, "I am ecstatic! I had my HIFU procedure with the Ablatherm in the afternoon and went home the next day catheter free. Within a couple of days I was completely able to resume my normal life."
Patients must have access to information…
Alain G., March 2006
At 55 years of age, and with a hectic working life, I had a slight cardiac incident which encouraged me to pay more attention to my health. In January 2001, during a visit to my GP, I asked for a PSA test. Result: 15. Oral treatment for prostatic hypertrophy followed by an ultrasound scan with no notable nodules. I didn't see a urologist for another 6 months. A PSA of 25 and a biopsy confirmed the diagnosis I had been fearing.
In October 2001 I began 35 sessions of conformational radiotherapy. The trips to and from the clinic were very restrictive and tiring and the secondary effects were difficult to live with, but the treatment got results. The PSA Nadir (minimum reached) was achieved after 12 long months at 0.5. This was followed by check-ups every 4 months for almost 3 years.
Meanwhile, I was finding out about my illness and about treatments. I spoke to doctors and my friends and I surfed the Internet a lot. This was when I discovered the applications which use HIFU technology, treatment by focused ultrasound with the Ablatherm device. At the time, few care facilities had the device, not all GPs and urologists were aware of it … and weren't very happy to be asked questions about innovative techniques by their patients!
In November 2004, after a short period of remission, the results of my tests and a new biopsy showed up a relapse, meaning that my radiotherapy had failed and that further treatment was absolutely necessary. Radiotherapy was ruled out because secondary treatment is contra-indicated (unlike HIFU which enables a patient with a relapse to be treated again). My clinical case notes seemed to encourage a catch-up (or last chance…) treatment by focused ultrasound, for which the statistics showed very promising results.
I'm not sure that my doctor at the time would have prescribed me the treatment which saved my life if I hadn't requested it myself. You have to ask! The centre which usually treated me was supposed to take possession of a latest generated device, but the administration was slowing down the procedure. I then had to spend many long months waiting, until in desperation I went to see a hospital with an excellent reputation, which is a world pioneer in HIFU and at the cutting edge of this type of treatment.
After this everything moved very quickly. Examination, visit to the anaesthetist, 4 days in hospital then return home under my own steam where I lead a normal life.
The treatment, which takes around 2 hours, is carried out using a rectal probe under local anaesthetic. Personally I only suffered from a few light secondary effects, little pain and no tiredness.
I was treated in January 2006. Until last week I was still waiting for my final results, anxious but above all reassured that I was in the hands of an eminently capable and human specialist, who uses a modern technique which is a precursor to tomorrow's medicine and which surely therefore has a great future. My results arrived today (march 2006, 22nd): PSA at 0.01 and negative biopsies! In other words, the Ablatherm HIFU probably saved my life and now I can finally forget my prostate cancer once and for all.
My experience was that there were delays in my being taken care of, which is unacceptable when you're suffering from a serious illness. This technique based on the use of the Ablatherm device is available but too few patients have access to it. This is a crying shame! Especially when you know that this technique can save patients like me whose earlier treatments have failed, and that there are certainly too many people who don't have access to it because of a lack of information. I have seen that you must have the right information to be able to talk to doctors and access treatments like HIFU which have proven their effectiveness.«I had to fight to get Ablatherm treatment!»
Robert M.
Interviewed by journalist Nathaly Mermet, on 06/SEP/06.
In July 2003, when Robert M. was told he had prostate cancer, it came as a terrible blow; he was 66 years old. His urologist immediately proposed surgery. An appointment was made for a radical prostatectomy …in just two months’ time!
Completely by chance, a few days after this terrible discovery, Robert M. happened to watch a TV programme about … prostate cancer during which there were veiled references to a recent technique called Ablatherm. He was immediately attracted to a solution that was described as being non invasive, and his hopes were revived. He went back to see his urologist to ask him whether it would be possible to benefit from this focused ultrasound treatment. The answer was unequivocal, dispelling the possibility of any alternative: he was “too young, and the efficacy of the treatment had not been demonstrated”.
Too young, was he indeed! …Robert was determined not to accept the verdict, and went off to get another opinion. He decided to cancel his surgical appointment.
Sexuality is important for men.
Robert M. makes no bones about it: who you know can sometimes be very useful …and it was a Professor of Urology in Nîmes who referred him to a clinic in Montpellier equipped for Ablatherm.
He thought he’d found a solution …but then another obstacle appeared. The surgeon who saw him was not enthusiastic either! Robert M. was indeed too young, since the guidelines of the Association Française d’Urologie (French Urology Society) set 70 years as the minimum age for Ablatherm treatment. The urologist also warned him that it was a new treatment for which there was not enough follow up, etc. etc.
“At 66 years of age, I didn’t want to ruin my sex life by having an invasive operation when less invasive solutions are available that can preserve erection better!” says Robert. There was no point pretending. He found it hard to imagine life without normal sexual relations …and took full responsibility for all the risks mentioned by the urologist.
His urologist told us that Mr M. is “one of those very determined patients, for whom it is possible to envisage deviating from the rule established by the AFU”. It is true that he was four years below than the minimum age recommended by the AFU. “But it was one of those special case where a number of meetings and in-depth discussions are required between the patient and the urologist”, explained his doctor.
“Urologists are men just like us. They don’t imagine they have all the answers, and you can talk to them openly…man to man!” Robert added.
His determination therefore proved decisive! And he did indeed receive Ablatherm treatment in 2003.
He is now 69 years old, and says he is happy that he was so determined … to the point of obstinacy! And with good reason: everything went perfectly and he had no pain. “I didn’t even feel as if I’d had an operation!” he says. “You can get up on the day of the operation itself, and the only thing that’s really annoying is having to go round with a catheter for 48 hours”, he explained ironically.
To be discharged from hospital, he had to fill three urine bags. So, as usual, he was absolutely determined to fulfil his obligation in record time, he explained humorously.
When I asked for more information about the HIFU treatment I was warned about the "lack of follow-up". All revolutionary treatments lack follow-up at the beginning, but they have saved countless lives of patients, a great many of whom would no longer be here today if they had waited for more follow-up on these treatments. When you have this type of illness you only have one thought: to get rid of it. I didn't want to wait and miss such an opportunity. All the studies published (including the oldest ones, which are still 10 years old!) showed without any doubt that Ablatherm HIFU is a very effective treatment, and above all one which has very little risk of complications.
Today I don't regret the choice I made as I am cured and I have a normal life again. The treatment was so harmless that I still can't believe it – I went home after 2 days with no pain or side effects. Compared with the experiences of other patients I have spoken to, some of whom had to go through 6 weeks of daily radiation treatment or undergo surgery, with everything that means in terms of convalescence and speed of recovery, the benefits are huge. I set myself the objective of talking about this technique to everyone around me to give hope to people who, like me, have experienced the distress which follows when told you have the illness. My urologist offered me HIFU instead of surgery as my heart is a bit weak and as HIFU is practiced under local anaesthetic, it would be more suitable for me
It was by sheer chance that I heard about Ablatherm and the HIFU technique one day. For me, after I was told I was ill, I was very frightened and I felt that either I was going to die soon or be mutilated and have to live out the rest of my life in undignified conditions. When I learned that this technique might be used on me I found hope once again. I am so happy that I was able to benefit from it. I am so shocked too that most other patients who don't know this technique exists didn't have the same chance I didMy wife made me choose Ablatherm! She looked for all the information about the illness and its possible treatments straight away. She is 15 years younger than me and refused to even consider that our life as a couple would end in incontinence and impotence. I still feel so young thanks to her, I didn’t feel brave enough to take on a treatment with which there was a strong chance I would lose my dignity and virility. According to the articles I read and the stories from certain patients, Ablatherm seemed to preserve patients' quality of life better and to be equally or more effective. We didn't hesitate for one second and as soon as we found the closest hospital which was able to provide the treatment we went along. Today I am cured and our relationship has not suffered as a result of this trial

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Conclusion of 15 years of research for a new prostate cancer treatment, Ablatherm HIFU is a non-invasive prostate cancer treatment which uses high intensity focused ultrasound. Very reliable, it generates few of the secondary effects feared by patients. Thousands of patients already got cured by this non-invasive prostate cancer treatment on the edge of technology, so why not you?
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