In this blog post I am trying to present the story of my illness in a short and compact way. For more about me as a person click here. I received my cancer diagnosis in April 2015, followed by therapy for almost a year. I am attempting to give my readers some insight what the diagnosis “cancer” actually meant for me, and I want them to share my personal experience of how resilient human beings can be and how much they can endure. For those struck with testicular or another form of cancer I want to show that you can manage to become fully healthy again.
I am trying to present things as they were – sometimes unpleasant, but also manageable. If you as a reader have also received this diagnosis I hope my story will not make you feel unsettled or insecure.
I know from my own experience that what is most important in such a situation is to be aware of your own power and strength. In this sense – whether you suffer from cancer or not – don’t panic, breathe deeply, whatever you need for healing has been provided for!
1. Before the diagnosis
In retrospect I would say that already one and a half years before my diagnosis I felt that something was wrong with me. I had felt very tired for quite a long time, had always had a cold, and had never felt fully recovered and fit. Being a social worker I attributed this to the pressures at work. I had always been concerned about my health, but never ever thought of cancer. In February 2015 I had a full blood count made, because I felt so drained and tired. The results, however, were good and my doctor told me to just carry on, my readings were excellent. At this moment the cancer was most probably already growing fast.
You will always be clever in hindsight. For instance, I remember that in autumn 2014 I felt a kind of dragging pain in my testicle, which faded again after some time. I also noticed in February 2015 that my nipples seemed to have grown somewhat. Both can be indications of testicular cancer.
Only in April 2015, shortly before my cancer diagnosis, did I notice that my right testicle had swollen, so that I contacted my general practitioner. In the days before the actual diagnosis I felt so ill that I started worrying about having to die soon. I had fever, had to vomit, felt pains in my back, had nightmares and had difficulties telling dream from reality.
2. The diagnosis
On April 24th, I was diagnosed with testicular cancer stage 3 at the Rudolfsstiftung hospital in Vienna. There are different kinds of testicular cancer depending from which cells the cancer originates. I suffered from a mix of so called seminomatous and non-seminomatous tumours. This meant I had cancer at the highest and most advanced stage. Metastases had developed in the lymph nodes in my abdomen, my chest and below my neck. Tumour markers showed a value of 200000 – which is zero with healthy people. I can precisely recall the moment when, already suspecting that I had cancer, I got the diagnosis from two doctors late in the afternoon. It seemed this conversation didn’t last for more than five minutes. As soon as these two senior doctors on duty had passed on the message to me they left the room.
After I had been informed that I would be operated on early next morning I must have surprised the two senior doctors. I asked them if, after I had fully recovered, I could have an artificial testicle so that I wouldn’t look so weird. In view of my situation and looking back from an objective point of view that was a highly irrational reaction. However, in retrospect I interpret this as my psyche activating a healthy defence mechanism, which is useful with potentially traumatising experiences. But after all now I knew – I had cancer.
In a certain way this diagnosis was also some kind of relief for me. Now I was certain that I had not gone mad, that I had really felt so bad in the days and weeks before. And so my journey towards therapy and recovery began.
After my diagnosis I realized I often had negative emotions I which I attacked and reproached myself. Shouldn’t I have felt this sooner? I wished I had consulted my urologist as soon as I had felt the dragging pain. Such thoughts drain your energy, and apart from this, they are completely useless. I will introduce you to several articles on how to cope with such negative feelings in the resources section on “psyche and mind”.
3. The treatment
April 2015: Removing of the testicle
Right after my diagnosis I underwent surgery at the Rudolfsstiftung Vienna. The operation is quite uncomplicated. The testicle is removed via a cut in the groin, and in the evening I could actually stand up and walk to the toilet without support. After a week I was almost free of pain.
April-June 2015: Four cycles of chemotherapy
For treatment I was transferred to the Kaiser Franz Josef-Hospital in Vienna. Chemotherapy, which is standard procedure for most testicle cancer patients, was carried out with three different medications, Cisplatin, Etoposid and Bleomycin. Each chemotherapy session follows a certain scheme to achieve maximum benefit. With the BEP protocol such a cycle lasts five days in which you will be hospitalized. Then there is a fourteen-day break, during which you have to return to hospital on two days to receive medication. In addition to chemotherapy you get medication to counter nausea and pain, and lots of water as infusions to wash chemicals out of your body again and keep kidneys healthy. Every day your blood is checked to monitor various parameters and make sure your body is functioning well enough. There will be a separate article on my experiences with chemotherapy soon.
After my second cycle of chemotherapy I got a port catheter. This is an entrance into your body that makes infusions much easier compared to needles in your veins. Frequent infusions and chemotherapy make your veins narrower and harder, so that it gets difficult to draw blood and fix infusion needles. A port means a lot less stress.
After the first cycle of chemotherapy I felt a marked improvement. Before I had suffered from severe pains in my lower back, which were due to the metastases in this area. I had also had a swollen neck as a result of an enlarged lymph node. After the first cycle the swollen node had almost disappeared and I was pain free, which meant I didn’t have to take any painkillers during my second cycle. Therefore I can say that I instantly realised that chemotherapy had an effect and was “working” in my body. Unfortunately I also felt very sick at the beginning and Cisplatin causes an unpleasant, metallic sensation in your mouth, which meant I developed a strong appetite for cheese toast and ketchup and similar stuff instead of much healthier food. Healthy nutrition is an important aspect, which I will deal with in detail later on. Although undergoing chemotherapy is a strenuous business it worked well with me right from the start. The tumour marker relevant for me – ß-hcg – went down from 200000 to 16. Fortunately testicular tumours are well treatable and the survival rate is very high if suitable therapy is available.
August 2015: a second operation
After my first round of chemotherapy the remains of the metastases had to be removed from my abdomen. This surgery is called retroperitonal lymphadenectomy. It is a much larger operation than removing one’s testicle, as often a wide incision across your abdomen needs to be made. I had to take opiate painkillers and stay in hospital for a whole week until the pain had eased and I felt a little stronger to take my first steps again. Looking back I can say that I coped well with this operation and now I can show off a pretty cool scar across my belly.
Only few testicle cancer patients will need this operation and even if one is necessary often a small incision is sufficient, so that there will not be a large scar. So again there is no reason for panic!
August 2015: relapse – marker rising
My sigh of relief after this surgery did not last long. The first blood test after the operation showed that ß-hcg in my blood was increasing again, in other words that cancer cells were still active in my body. As a consequence I had to undergo a second round of chemotherapy, a so-called high-dose chemotherapy with autologous stem cell transplantation. In simple words this is a kind of extreme chemotherapy that completely destroys your bone marrow. Then it is rebuilt with the help of stem cells, that is cells that can change into any kind of body cell. This means a much higher dose of medication can be given and a much higher effect can be realized. Some people, like some Leukaemia patients, will need a donor for this, others as in my case these stem cells can be harvested from your own blood.
September/ October 2015: another four cycles of chemotherapy
For high-dose chemotherapy stem cells need to be harvested. For this you receive chemotherapy medication – in my case Ifosfamid and Taxol – that make your bone marrow produce extra stem cells. This kind of chemotherapy was comparatively mild and caused fewer side effects.
On the other hand this meant that I had to give myself injections at home to make my stem cells multiply, and I had to check in at hospital daily to monitor the number of stem cells in my blood. As soon as there were enough I was transferred to AKH hospital in Vienna where I got some kind of VIP treatment. With a “cell separator” your stem cells are obtained, which is similar to dialysis.
This was quite exciting, and my stay at the AKH was a fascinating experience in more than one way. I was attended by a wise and sensitive nurse, who helped me reach my “spiritual breakthrough”, which became a starting point for a deeper understanding of the world for me. I realized this day that I am loved and protected by so many people and that getting cancer wasn’t life that is against me and that ultimately nothing can happen. I’ll explain about this more in detail in English soon.
I had four of these chemo-cycles and afterwards my tumour markers had gone back to normal.
November 2015 / January / March 2016: three cycles of high-dose chemotherapy
High-dose chemotherapy is not a stroll in the park, but after all you can also cope with this procedure. I managed comparatively well, although I have to admit that this does have consequences for your body. After such therapy is important to do a lot for your own personal recovery.
I underwent three cycles of three weeks each at the Hanusch Hospital in Vienna. At this point I would like to thank all nurses, doctors, cleaning staff, physiotherapists, psychologists, dieticians, in fact everybody, that my stays were characterized by such loving care – an essential factor that allowed me to weather this challenging time well.
So what kind of procedure is this?
On the first day I got a vein catheter with three cannulas, and blood samples were taken. From day two to day four I underwent chemotherapy with Carboplatin and Etoposid. Then I was transferred to a sterile room. As you have to survive without a functioning immune system for a couple of days patients have to be isolated for their own good. You have your personal nurse and visitors are only allowed to enter with protective clothing, so that germs are kept out. After chemotherapy you get your stem cells via infusions and then it takes your immune system some ten days to recover. Once your leucocyte count has risen to above 1000 you may leave your sterile room and you have “survived” your treatment. During therapy you get blood infusions and blood platelets, if you haven’t enough of them, and antibiotics and other medication to reinvigorate your body. You can help by taking your medication correctly and paying attention to hygiene in general, particularly to dental hygiene.
In my case I was extremely sick during my first cycle, and for three days I was extremely tired and felt really ill. Today I think that a lot of this was due to my fears concerning this therapy and particularly the sickness accompanying it. I coped a lot better with the second and third cycle and if I remember correctly I didn’t even have to vomit during the final one (quite remarkable considering the amount of poison in my body). This means your attitude and mental condition have a great effect on how your therapy works out!
I remember clearly that this therapy was a very special experience for me. I think I would actually compare it to a Buddhist retreat. It meant three times a two-week period in a secluded room for an intense confrontation with myself. I meditated, read spiritual books and listened to audio files. I enjoyed one hour of daily visits, ate my food attentively, did my daily physiotherapy, and had a lot of intensive and also funny conversations with my nursing staff. I recall really beautiful moments during this time. Whenever my leucocytes had risen above 1000 I felt incredibly happy. Again and again I danced with music in my ear (not as exuberantly as in other times), and I had the feeling that I could reach whatever goal I would set myself. So despite all the hardships I felt great and excited at the end of my therapy. Returning home and feeling the warm rays of the sun after three weeks in hospital is a reason to feel happy after all!
4. After the treatment
After three cycles of chemotherapy I had one more CT and it turned out that all the remains of the metastases in my abdomen had disappeared and those in my mediastinum had shrunk a lot. From then on I was officially in oncological aftercare, and every three months I have to call in at the hospital for check-ups. This means blood is drawn to monitor tumour markers, and I either have ultrasound or a CT-scan to make sure nothing is growing again.
After my treatment I did a lot to regain strength, which you will be able to read in the next article.
Thanks to my parents Rainer & Helga for translating this article into English!