Wolfram Nolte's Story
The better you plan the greater the shock.
The year of 2007 was drawing to a close. It had been a good year since it was my last year in business. I had always loved and enjoyed my job as an international sales manager in mechanical engineering industry. Business made me travelling around the world to see prospects and trusty customers. But now I was looking forward to enjoy my retirement with time to spend time on things I have had to postpone before. Doing repair work around the house, allowing the window frames a new lick of paint, gardening, bicycle tours, sailing.
I was alive and kicking, especially since I had undergone a hip replacement nine months before with a very positive outcome. My metabolism was pretty much okay and I felt medically optimally monitored and adequately fit for my age of 63.
When I was 59 I had been to colonoscopy for the first time in my life. It had needed almost four years of insistence and nagging from the side of my wife to get me there. Preventive colonoscopy is offered in Germany from the age of 55. The coloproctologer surprised me with the news that he had discovered a cluster of polyps – he said “a hamlet with a population of less than hundred” – near the upper far end of my colon. He calmed me down by explaining that this situation was in no way critical provided of a negative result of the biopsy which he had sampled and - which it proved to be. He also had a name for this condition which I had never heard of before: aFAP which translates to attenuated familial adenomatous Polyposis coli. Attenuated as I learnt meant a mild form of Polyposis typically for the second half of life. Familial adenomatous Polyposis itself, however, is a disease caused by a genetic mutation of the APC gene which clinically appears as numerous adenomata which sometimes line the inside of the colon like a carpet. Children inherit the condition from one of their parents with a 50:50 risk. The polyps start growing already in children more normally, however, in teenagers and young adults. With their growth they continuously change their cellular structure until in the last phase (typically between the age of 25 and 40) they degenerate into cancer. The likelihood if untreated is 100%; the only treatment which helps is to remove the substrate of the polyps – the colon in good time prior to the outbreak.
My doctor told me that all of this didn't apply for the attenuated type though an annual colonoscopy would be necessary to keep track of the further development of the polyps. Since neither the human genetic tests on me and my son – 29 of age at this time – nor a colonoscopy on him had substantiated suspicion on a hereditary condition there was no greater reason of concern.
Hence I followed the doctor's advice and showed up year after year for the “dance with the black mamba” (will say the tube of the endoscope). In the meantime I had joined a patient support group and learnt much more about FAP, aFAP, MAP, HNPCC and other hereditary conditions leading to cancer, predominantly but not only of the colon. I also met a very engaged and emphatic consulting surgeon with a profound knowledge and practice in particular about the aforesaid diseases. She was running the visceral surgical section of a small but highly specialized clinic in the outskirts of the city of Bochum overlooking the Ruhr river vale. Nothing was closer than the conclusion to give confidence to her when it came to my annual colonoscopy and year after year the message was stereotypically the same: any matter of concern.
I was feeling well and perfectly prepared for a joyful retirement.
In 2008 my last colonoscopy was in April and towards the end of the year I had booked the next one for the end of March of the next year.
It appeared in early January 2009 that I felt some pressure in my stomach area. No reason for me to be alarmed. Maybe it was to blame to the days of good living around Christmas and the shift of the years and it would disappear like it had come. But it did not. After two weeks I rang up my trusted coloproctologer. “You need an earlier appointment?” she asked after I had explained my problem. And “See me tomorrow morning!” was the short order.
Next to come were CT and colonoscopy and the statement: “There is some process in you colon, we have to operate on you”.
Throughout the years before I had never thought of a situation like this. Always a clear diagnosis and now it was time to say goodbye to my colon! No panic though. Instead I was full of confidence to meet the best available treatment.
After the surgery the disastrous news: “We have found a malign tumor at the joint between the big and the small intestine and also a considerable number of affected lymph nodes. This fast growing cancer is extremely rare and there was positively not the least anticipation of it in the previous colonoscopy. Therefore it is classified as an interval tumor”.
Cancer, metastatic nodes, panic, desperation! Where was the end of it, when would it end, when was I to end, how much time was left? All these questions were spinning in my head. So this was the end of the joyful retirement together with my family and the grandchildren yet to come!
My family and my doctor calmed me down, gave me hope and confidence in better medicine in advanced treatment and the promise to stand on my side. Hope, the early riser on the darkest day!
After three weeks in a rehab clinic specialized on oncology I had recovered from surgery and I had made the first steps to adapt to a changed pattern of bowel motions and learned a lot of diets reducing their frequency. Fortunately my surgeon had not removed the whole colon. My rectum was left and that was sufficient for hooking up the ileum to; a better solution for patients than the ileo-anal pouch not to mention a stoma.
Relaxation exercises, autogenic training and psycho-oncologic consultations had strengthened my dickey psyche as did light sports and gymnastics for my body.
I was ready to see my oncologists at the Tumor Centre of the University Clinics of Essen. They already had been discussing my case and its histology with my surgeon. Though what nobody yet knew became visible in the initial CT: three metastases in the liver. Unbelievable which rapid progress the disease had made. My cancer – my enemy – seemed by no means to be prepared to losing grip on me. I felt challenged. I hated him, I didn't call him, I wanted him to go away, to leave me alone.
To start with my chemo therapy my oncologist suggested to join a study group which was about comparing two monoclonal antibodies, Cetuximab and Bevacizumab. My ticket said Bevacizumab and my doctor explained that this substance was inhibiting vascular growth when tumor cells in the process of proliferation tried to force my body to connect them with blood supply. This attempt was refused with the help of Bevacizumab and in consequence the tumor cells had to die which in medical terms is denominated “Apoptosis”. How I love this word. Additionally I got three other substances – Irinotecan, 5FU and calcium folinate to beat back metastatic growth. Every two weeks from now on I was calling at my “cocktail bar”. The toxicity of the “cocktail” however, generated quite heavy side effects: nausea, vomiting, permanently dripping nose, nose bleeding, sore gingiva, diarrhea and fatigue. But the therapy also proved to be successful. After six weeks the CT showed an obvious remission of the metastases. After three months the metastases in the liver had drastically shrunk. It was decided to pause the therapy in order to remove the residuals of the metastases by an exploratory operation. Once the surgeons however could examine my liver they asserted a complete remission of all metastases. After three more months of the previous therapy also the lymph nodes had shrunk so much that the decision was no more cocktails.
What a feeling! The enemy was eventually beaten! But after ten months it came back again. Any metastases but obviously grown lymph nodes and more than before. Same therapy again, same side effects again and same reaction again, the size of the nodes was shrinking. Not as rapidly as the first time but nevertheless continuously and with the outcome that the therapy was stopped in February 2012. Now more than one year without therapy later – I'm writing this June 11th 2013 – I have an appointment for CT in three days and for rectoscopy and gastroscopy next week. This is always a situation for me full of tension but also full of hope – like a lottery. I hope that the findings will be negative, I don't want any relapse. By now I've survived for almost four years and a half. I'm 68 now, my granddaughter is the sweetest little girl in the world; I'm longing for seeing her growing up and for spending many more years with my family. My initial plan for my retirement was different but the better you plan…… Today I don't plan any longer, today I hope and enjoy and tomorrow and hopefully also the day after tomorrow.
I did my best for the prevention of colonic cancer. I went to see my doctor following a regular pattern year after year for carrying out colonoscopy. In spite of all of these efforts I got cancer.
Does this speak against colonoscopy? No way! My case is a very rare one. Colonoscopy will help many more people to give cancer no chance. Colonoscopy helped me to meet my doctors a long time prior to the outbreak and we got familiar with each other. That helped to react when it was time and it helped me to the best available treatment.
It's no choice – it's a matter of survival!