How a Second Opinion and Positive Energy saved my life. A perilous journey.

Written by Richard
2020-05-22 08:34:46

As part of our “Journey to Health” (#journeytohealth) series on our Instagram page, Luma brings you the story of Richard who was confronted with a diagnosis of a potentially terminal cancer.

Richard did not have any symptoms and signs of prostate cancer but went for a checkup. The diagnosis was “benign and common prostate enlargement”. Two years later, he was back to the hospital for another routine check. This time, the checkup revealed a potential stage 4 prostate cancer. He consulted friends and got a second medical opinion. That second opinion saved his life.

Read more about the inspiring story of struggle, hope, and perseverance and incredible mental support from his wife and son. Learn more about Richard’s perilous journey to overcome the deadly disease, from diagnosis to treatment below.

Richard and his Journey to Health

My name is Richard and this is my CANCER story. Or better, it is the story how I survived CANCER with the help of my friends of 35 years and the LUMA Chief Medical Officer. They urged me back to my country when they saw, that here, in Bangkok. The 2 doctors I consulted put on an expensive road of no return………Being a lawyer I am still thinking of suing the hospital and the doctor, but now, that my situation is under control I started looking forward and am closing this dark chapter. Maybe I can also forgo my wrath, because of the light my wife and my son were shining on my path into darkness and the incredible professional, yet uncommercial ethic the medical team in Munich showed.

I have seen their journey alongside mine as well, starting from detached professional concern, to compassion, hope, relief, triumph and to outright joy.

It started about 4 years ago with a routine health check in a notoriously expensive and highly commercial hospital in Bangkok. A doctor explained that my PSA value of 14 would require attention and investigation. The PSA value is a tumor market indicating an irregularity with the prostate. There was no further explanation, but a nurse shipped me to the specialist, after I had to acknowledge that there would be an additional charge for this consultation.

The consultation was short, expensive, and inconclusive.  I was recommended to immediately book a set off additional investigative measures such as CT Scan and a biopsy. Core cost for biopsy on outpatient basis about THB 150,000. Credit card for down payment. please… sign here……

I just paid my school fee bill a few days earlier and knowing the ferocious commercial appetite of this place I decided to get a second local opinion at a hospital of originally good repute, known for its more appropriate rates.

The doctor there was friendly and relaxed.  He just asked: Did you have an ejaculation and /or did you ride a bicycle? Then he asked me to come back next month for another PSA check. The same repeated itself for 6 months and the PSA went up to 37!!! Straight!!! Linear!!! Not up or down.

At PSA 37 he recommended a biopsy. No ultrasound. No abdominal CT Scan. Just a biopsy. The cost was 1/3 of the first estimate.

The process was executed sub-standard by all measures. I do not want to go through the methodology of getting the tissue samples, but it was painful although I was supposed to be sedated. Well, it did not work. What was worse was that he only took 6 samples.

A few days later I got a call: Everything is fine. No cancer material found. Benign! Should be observed, but seems normal prostate enlargement. No worry. Have a nice day.

I did not worry. And I made the mistake of believing this information without asking my friends. I am not squeamish and I do not bother friends, especially friends that are doctors, with what seemed to be a trivial question.  Also what I read about benign prostate enlargement, did fit into the picture. Except that there the values do not rise is a steep straight line.  My mistake.

Another reason why I did not question the results too much was our generally good experience with the Thai medical system over the last 20 years. While we are a very healthy family, my wife had an eye operation at Rutnin Hospital and it was done to perfection. And also the other maladies following injuries, tropical infections and accidents were all treated well, with good attitude and in a friendly setting. It was my case in which I got unlucky. 

I also did not have any symptoms or indications that usually manifest with prostate enlargement, mainly frequent urge to urinate or the feeling of an obstructed urine flow. But after 2 years I went back for – what I thought would be – a routine check.

Instead the PSA was 148 !!! This is not only an indication for CANCER. It is an indication for a Stage 4 CANCER, which means that the tumor has already broken through the originally encasing prostate tissue and is now spreading through the body. First targets of the cancer outside the primary tumor are usually the adjacent lymph knots and the abdominal bones. Once the CANCER enters the lymphatic system it can travel anywhere in the body. The PSA value will also catch these manifestations and this is why a value of 148 indicates an acute advanced or even life threatening condition. 

My first question was: How long do I still have?. Not because I am afraid of death, but because I have a son and a mission that I have yet to accomplish. When I was told that it can be anywhere between 6 months and 5 years, depending on metastasis I decided to FIGHT.

Naturally for my son and my wife it came as a shock, but they, too, started fighting. And it transformed our family. Priorities changed. But life did not get infused and infiltrated by fear and fatigue. We started to seeing the best things in us and our environment. Carpe Diem. All the many small daily grudges of family life vaporized and what was left was pure positive energy to make the best out of it.

On the day of the diagnosis my wife activated her network. Nobody tried to conceal anything. I informed the school, the colleagues and clients that I trust and my friends. Their reaction was one of shock and compassion but also of reason and support. Our openness was rewarded with moral help, professional support and a flood of positive energy. From the network of my wife came the introduction to a friend of a friend, who is a Thai specialist in this field. He lives and works overseas and splits his time between Thailand and his life abroad. He called me on the day of the diagnosis (it all went very fast) and I sent him the anamnesis and the test results. He told me: “Do not worry, I will take care of you, but you have to wait until I am back in Thailand in 2 months’ time. Then I can admit you and we do the full workup and staging tests”.  I was not comfortable with waiting. But in the first conversation he already explained the merits of Brachytherapy, which was his core area of expertise (and income).

Brachytherapie  is a rather un-invasive process, where by a number of radioactive capsules are injected into the prostate to destroy the tumor from within. His explanations had appeal, compared to the Castration and Chemotherapy approach of the first doctor.

The next day I started Androgen Suppression treatment. This is a kind of reversible Chemical Castration, consisting of tablets and a 3-month injection which needs to be applied for a 2 year period. The injection stops the production of testosterone while the pills block certain receptors. Both medications together can – if the patient is receptive – stop tumor growth. But it is a costly therapy and not covered by the insurance, because I only have inpatient cover. One injection is about THB 30.000 and only available in hospitals at retail prices. And the pills cost around THB 300 to 450/pill and day. 

It was a busy day. Because I also spoke to my friends and specialist in Germany. And I spoke to a French friend who is the Chief Medical Officer of a health insurance in Bangkok. They were listening, reading the reports and came to very different conclusions than the original 2 doctors.

They all, however, agreed on the immediate start of the Androgen Suppression Therapy. But they urged me to immediately start the staging assessment, which includes a Bone Scintigraphy (a bone scan), Ultrasound, MRI and CT Scans. Ideally as well a PSMA PET SCAN, which is a state of the art CT to detect even micro metastasis throughout the body that have its origins in the prostate tumor. But these scans are very costly. The PET scan alone is at least around THB 60.000, after discount.

All the European specialists were clear that at a PSA of 148, Brachytherapy would be the wrong approach. This is not an approach for a suspected stage 4 carcinoma. This second opinion had the biggest medical bearing on my life for all the years still to come.

I resisted their urge to jump on the next flight to Germany because they told me, that I have to plan for 3 to 9 month in Munich for any meaningful therapy. From the record they told me that spreading has to be assumed and that it is likely only to take palliative measures, meaning therapies to preserve live quality and to buy some time, instead of attempting to heal.

My family is here. My clients and jobs are here. My responsibilities are here. I have not been to Germany for years and am living abroad for more than 25 years. It was a difficult decision so I decided to wait the 2 month for the doctor and then review the best way forward. I had no intention to burn through the family values and reserves that are meant to provide for my son’s education and my wife, just to ….. what??? time to die???? NO.

Instead I made peace with death. I used my time to work even harder, bring my things in order as long as I still could, take all preparations necessary to not burden my family and mentally prepared to fight. I started with Pranayama, which is an ancient breathing technique and philosophy my wife is teaching, but continued my martial arts training with my son. I have been in critical life threatening situations before. I had a challenging time at the Army, I did 88 m dives, sailed at 11 Beaufort and took risks. What I was building up in these 2 month was the cold resolve to fight for harmony at home, time and productivity, under the full acceptance of death. I had and have a mission and I suffused my mind and my body with strength and positive energy, like a warrior on the eve of battle. My workout regime got harder and with every day my body and mind got stronger and more focused. All the time my family and my friends were by my side, but in my mind they faded back onto the ranks, as observers. This was MY fight. A fight FOR my family. Not a fight alongside my family to save my life. I believe that this made all the difference. I was not driven by fear for myself, but by my fear to leave my wife and son at the wrong time.

And I worked on the backup plan. And this backup plan slowly became the master plan. In my mind I prepared for going back to Germany. I have a place to stay with close friends. I was preparing to find work and to shift not only myself back into the system, but to shift the center of gravity for the whole family back. My son will start to go to university in Munich next year and my time there would allow me to create a family existence back in my ancestral birthplace.

Again, it was my mindset and this plan that mobilized even more energy in me. During the 2 month a potential forced necessity to leave for Germany, as a backup, knowing the sheer magnitude of the problems and cost it would bring to the family, turned into a game plan. Concerns were replaced by concepts. Action aimed at preservation turned into an offensive strategy to attack. It was like the feeling of living on an island with limited resources, but surrounded by sharks, while the land in sight holds the resources to survive for all. I saw myself as having to go and building a beach head for them. It extended and clarified my mission and the preparations took shape.

After 2 months (it was now January) and after the arrival of the doctor in Bangkok, I then paid about THB 60.000 for the basic CT scan, the Ultrasound and the Scintigram, which was the first part of the staging tests. The doctor did not order a PSA test.

The results were not encouraging. I had suspicious marks on the bones on the shoulder and the sternum and the ribs and the CT showed liver knots and what could be cysts…. or tumors. Yet his solution was still Brachytherapy (immediate down payment required).

This evening 3 things happened. 1. I called my friend. 2. I shared the results. 3. I booked a ticket to Munich. I was ready. My family was ready. I knew that I might not see them again or that I might come back with various grey options.

The day I arrived in Munich was the first day of my new life. My friend in his clinic hugged me with somber gravity and bade me to pull down my pants. The ultrasound in Bangkok required 7 nurses and an operation theater plus an admin person asking for advance payment.

At my friend’s clinic we joked throughout the process and within 15 min he explained to me that the prostate is not as big as the PSA would indicate. Also the texture is not like that of a golf ball, but rather flatter than expected. He booked me for a new Scintigram and another CT, this time focused on the abdomen. And he took blood for the PSA and indicator check.

For the scans I had to wait a week, because it was not an emergency. But a few hours after the blood was taken, my friend called me late night and he was so excited that the PSA was down to 0.55. This means that – if correct – my organism and the enemy within did respond well to the Androgen Suppression. Next day we repeated the test just to make sure and the value was 0.54. BINGO.

More positive energy. It was like facing a ruthless and brutal enemy in the field and surviving the first engagement.

I have to admit that I was very tense during the scans that followed, because if the liver had been affected already, I would have only month to live. Or a bit longer, perhaps.

When I met the Radiologist (in Germany the doctors do take time to explain their conclusions) the Scintigram… yes… it showed “spots” on the sternum and the shoulder (this time the other shoulder) BUT, they did not have an outright tumor signature and could be results of injuries. Especially because the CT Scan showed no abdominal bone infiltration and that the abdominal lymph knots also seemed clean. If a tumor spreads it would first affect the close by and adjacent tissue.

Because of this, the liver anomalies could be “normal” cysts and not cancer related.

This was the day that I did survive the second engagement with the enemy.

My friend then sent me to his friend and colleague, Prof. Dr. Alexander Karl, at a small hospital in the middle of Munich, in which his Urology has top word class standards. After discussion they both agreed on a Radical Prostatectomy. This would be THE decisive battle. It is a highly invasive operation whereby the whole primary tumor is removed. The fact that the abdomen was clear of spreading, the chance that the liver was not yet infiltrated and the ultrasound size measurements were the reasons for this decision.

It is needless to say that the prostate is an organ in the very center of the male organism. Surrounded by and interwoven with nerves controlling potency, continence and parasympatic abdominal functions, a lot can go wrong. The flow of urine is controlled by 2 ring muscles. One we can actively control, the other one not. The one we cannot control and which is system controlled (like the heart or the peristaltic) is removed in the process and the Urethra is re-fixed to the bladder. Any accidental or necessary removal/ cutting of nerves will lead to irreparable damage. The operation requires spinal pain management, a catheter and post-surgery drainage. The hospitalization period is between 8 to 14 days.

It is not subtle. Not gentle, not preserving. It is a frontal, highly invasive, uncompromising attack against the enemy within. But I was ready for it and the date was set for End February. THIS WAS WHAT I CAME FOR.  The decisive battle. And again, my family sent me incredible amounts of positive energy, like they were cheering in an arena fight. And I know that their spiritual positivity and the skill of the operating team were the key contributors to victory. I prepared myself with 10 km walks workouts, meditation, pranayama and my young friends, where I lived, shaved my head.

What the team then did, was nothing else but outstanding professionalism of the highest international order. An elite strike team on a complicated mission.

I was standing up the day after the surgery. The catheter was removed after 6 days. No blood clots in the urine from the beginning. 95% continence within an hour after catheter removal. Full continence within a few days. 

But the most remarkable information came then: The lab results: The tumor has consumed the Prostate from within, but had not yet- by a hair’s breadth- broken through the confining tissue. Very much to the amazement of the specialists themselves. This meant that the primary tumor has so far been the ONLY identified tumor. This could mean that, today, 6 weeks post operation, I might be cancer free.

The androgen suppression has been stopped and my body is washing out the drugs in the next 2 to 3 months. Then the PSA value will be measured again. If it is above 0.07 a PSMA PET SCAN will be performed and then we kill every PSA related manifestation in my organism through focused radiation. But whatever it is, it cannot be big.

Naturally I am now very careful and get the rest of my body checked piece by piece. And I have learned many lessons along the way. Getting a second opinion in critical cases is one of them.

Had I stayed in Bangkok and in the care of the 2 doctors, I would have bankrupted by family for a few years of life extension and mental and physical misery.

I believe…, I know, that my fight, the positive energy sent by my family, the support of my friends, the mastery of fear of dying, the decisive steps I took to fulfill my mission in life, were the ones that kept the raging, aggressive monster long enough inside in his cage to be captured and killed by one of the finest doctor teams in the world. On home ground. In my own keep.

To go back was my choice. I am sure I would have been able to find the correct treatment in Bangkok, too. But not alone. Cancer is a fierce enemy and it grows within, camouflaging as one own body cells and hence invisible to our immune system. Every cancer has its own signature and the treatment options can vary from person to person. There are immunotherapies, holistic approaches, the oncogenomic approach, whereby the genetic signature of the cancer is profiled and where AI is calculation potential mutations and the pharmacological molecules killing them. A wide range. Age, gender, general health, individual pharmacogenomics responses, fear of or indifference to complicated surgeries, the availability of skills or medication on location, the many hunderd clinical trials all around the world…. All this can influence the choice of treatment. The average doctor has about 15 minutes max per patient to discuss and decide what to do. Standard treatments are the usual outcome of these 15 minutes. This is why the success rate is so low. Chemotherapy for instance is only effective in 25% of all cases. But it can be damaging to the body and it is expensive. Getting the right intelligence, understanding of the situation, the nature of the disease, exploring options and alternatives, can make all the difference. Specialists of all disciplines concerned should be heard. Yes, timing is an issue. There is little time to loose after a diagnosis is confirmed, but running off in the wrong direction can be the bigger peril.

3 weeks after the operation I was on my way back home to my family and into COVID-19 voluntary confinement, and back to work.  In the hospital they had a joke about me. They called me “The Patient Who Does Not Know He Is Sick…….” Thailand Health Insurance