What Patients Tell
Cancer can strike everyone. Those affected and their families suffer and hope, sometimes for years. Read about some patients from the UK, Germany and the Netherlands who experienced Photodynamic Therapy. We ask for your understanding that some affected people want to remain anonymous. Thank you.
Kasimir Beloff was afraid of his next mouth cancer surgery
“If you have already had a mouth cancer operation, the worst you are afraid of is your physician saying: We have problem again. How long will that operation take? How much tissue needs to be removed? Will I still be able to speak afterwards? Will eating and drinking be an even larger problem in the future? Oh my God!”
Photodynamic Therapy made the difference for Kasimir Beloff. Off to London he went to see Colin Hopper, the PDT-pioneer who is specialised in head, neck and skin cancer! When asked how much tissue would have to be removed this time, to Kasimir’s big surprise, Hopper answered: “Nothing will be removed.”
PDT works with an extraordinarily simple principle. Medicals use light-sensitive substances that are applied on the skin or injected. This so-called photosensitiser takes several hours or days to reach the cancer cells. Then the second part of the treatment begins.
A non-thermic laser beam is focused on the tumours. The light activates the light-sensitive substance and kills the cancer cells by inhibiting them from taking up oxygen.
Kasimir Beloff knows that PDT is not the Holy Grail; but it is a treatment his quality of life could be saved with, and without an intervention.
Therefore, he cannot understand why PDT is not applied more often, as it would have spared him much suffering. “I bet it must be much more efficient to treat patients like me using PDT. If there had been PDT for me some years ago, my health condition would have been much better. Now I look forward with growing confidence."
"Even if the cancer comes back I know: There is PDT. I am so grateful to all those who have helped me, especially my physician, who established the contact to Colin Hopper. London is really worth a trip!”
Skin cancer patient Irmtraud Schwedler fought for her PDT – and won
If Irmtraud Schwedler’s physicians had had it their way, she would be missing parts of her nose and cheeks now and her right eye would water. Irmtraud Schwedler’s story is about surgeons, dermatologists and family doctors telling her that an operation would be the best option against her basal cell carcinoma.
“My family doctor told me that his father had been operated just before. Obviously he was quite happy about the result and didn’t believe that a permanently watering eye would be a price too high to pay for getting rid of cancer.
When I explained that I had found loads of information about PDT on the Internet, he let me know that I’d rather leave diagnosis and therapy to the medicals. Even after I had given all the documents on PDT, he said I’d rather not waste my time.
Other physicians were also obsessed with the idea to have me operated and my face disfigured. Yet I would not have let myself to be misled and started looking for a specialist. He told me that PDT is not applicable to small tumours only.
Six weeks after the treatment, the excrescence has vanished from my face. I feel great! It is more than a relief to get back to normal again: It is the satisfaction associated with having fought and won. I don’t even have a scar. I can look into the mirror and have the feeling that the cancer was just a bad dream.”
Female patient from Amsterdam, the Netherlands, aged 86, was treated with PDT on January 30, 2011
“For the first time, the symptoms appeared 4 years ago: pain when swallowing, and the area remained irritated and sensitive. Cancer had been diagnosed then. Two years later, the doctors detected cancer on my right cheek and at the edge of my tongue. So to me, it was obvious that cancer was probably back again.
I thought my world falls apart. Sure, I had reached a remarkable age, but I still felt good, even though my heart was not in its best condition, and I already had to take medication. Now there was a squamouscellcarcinomain my mouth. I wrote that term down to know exactly what it is. First, I was supposed to undergo surgery, but due to my age and my heart trouble PDT was taken into account. The doctor who treated me at the university hospital also worked at Antonie van Leeuwenhoek (AVL) hospital where PDT is applied. In 2007, I had been radiated for the first time, and this was not an option any more. Actually, I had never heard about PDT before, but I put great trust in my doctor. He told me my treatment would have priority if my condition was really serious. But that was not necessary. Three weeks after the diagnosis, the treatment began.
I had lots of pain. As I still had to take medication for my heart trouble, I wasn’t allowed any morphine. I was given another strong painkiller. Additionally, I catched a lung inflammation that was treated with antibiotics. But as you can see, I have fully recovered. Today, I feel well, and all medical checks are fine.
Photodynamic Therapy has helped me a lot. As I am already of advanced age, complications are always round the corner. And the treatment itself is pain-free.”
Female patient from Beverwijk, the Netherlands, aged 69, started treatment with PDT in October 2010
“I felt pain in my mouth and my first thought was: cancer. The symptoms resembled the ones I had already had in 2007. Back then, I had to undergo surgery and radiotherapy to remove the tumour. That was really painful – and disfiguring. Due to a positive gland, something had to be removed from the right side of my neck. In 2008, a salivary gland was removed because it was chronically sore.
I have always been a heavy smoker. At that time, I was used to smoking only 20 cigarettes a day; before that, it had been twice as much. I always bore in mind that something awful could happen. But all these diagnoses could not keep me from smoking.
In 2010, a spot was discovered at the floor of my mouth. Due to my medical record, radiotherapy was not an option any more. Fortunately, the tumour hadn’t grown too far inside yet, so PDT could be applied – that was the most obvious thing to do. I had already read about it on the website of the Netherlands Cancer Institute.
Two or three weeks after the diagnosis, the treatment began. I must admit I had some pain afterwards, but there was a telephone consultancy, and that was great. And painkillers helped me to get along quite well.
It is a pity my former diseases had to be treated with radiotherapy and surgery and that PDT was not an option back then.
Today, it is already possible to treat even deep-seated tumours with PDT. But I already had metastases, and PDT is applied locally. I would always choose PDT again.
Today I feel fine. And I quitted smoking.”
Male patient from Haarlem, the Netherlands, aged 58, was treated with PDT in 2005
“The first of a couple of symptoms was a lump in my throat, just like during laryngitis. After six weeks, it was still there, so I went to see my family doctor. Apart from that, I really had no discomforts, not even “something” in my throat.
Then I got the diagnosis: a tumour at the base of my tongue. In my mouth and throat, nothing was visible to the naked eye. As the tumour lay in deeper tissue, an investigation via MRT scan was necessary. That happened in 2004.
I had a feeling of entering the “special world” of really seriously ill people. It was a world of the “others”, the unhappy others. (Today, I don’t split the world in two such different worlds any more.) There came a time of great uncertainty, every day a bit of apocalyptic mood, and moments of fear as well, especially shortly before bedtime. But I have also been hopeful and attended to my daily routine – that was a badly needed diversion. So actually, the impact was quite limited.
The team of doctors considered a surgery, i.e. the excising of the tumour, too risky. The procedure would have caused too much damage, and I would have suffered the consequences for a long time. Thus, we decided in favour of radiation and chemotherapy, the supposed routine treatment. The chemotherapy had to be stopped after a while, because my body reacted badly on it, and that could have endangered the radiation’s effects. (The chemotherapy was adjuvant, i.e. the statistic probability of a complete cure would for example rise from 75 to 82 percent.)
During my therapy, I did some research, especially on the Internet, and came across other forms of treatment – including PDT. After one year, it showed that the tumour had grown again (apparently, the treatment had not killed all tumour cells), and I underwent an explorative surgery. The very same day, I was told that there was no other possible way than to cut out my tongue. Then, I proposed myself to cut first, and then apply PDT. (Back then, PDT had already been applied numerous times to tumours on the surface, like on the skin.) The following day, I went back. An appointment was arranged, just for this – at that time experimental – treatment.
I was sent to cancer center Daniel den Hoed in Rotterdam, which is part of the Erasmus MC hospital. Here, two specialists were to work together: Professor Tan was the specialist for PDT, Professor Levendag the specialist for brachytherapy – a form of therapy which uses thin catheters to enter into deeper layers of tissue.
First, my throat was operated so that the metastases wouldn’t spread any further. Then I had to wait for one month. A light-sensitive substance was injected, and two days later, a very short surgery followed.
It was a very difficult time. The first days, I couldn’t see properly because my tongue was swollen badly. Nevertheless, I experienced these days as if I was in a protecting cocoon. Of course that was due to medication. The weeks and months that followed can be described as different phases, each one with its own character. I remember that I was disappointed concerning the length of time I had a sore throat; in fact, I was told that it would get better after six weeks, but even after three months it was still there. Of course you have to take into account that the treatment was very experimental, and to a large extend, forecasts are based on the knowledge about earlier, comparable cases. Today, I guess forecasts are much more reliable.
Looking back, I think: They should have done that straightaway. Because until today, I feel the effects of radiation. In the past years, I recommended at least asking about the option of PDT to several cancer patients. I just don’t understand why you should always try radiation first. The long-term effects of radiation concern many people, at least for patients with head and neck tumours.
I feel a bit like a disabled person. Every day something reminds me of it. My handicap: difficulties in speaking, eating, drinking. All this is the result of a half-crippled tongue, a epiglottis that is not completely closed any more, and a neck that has become hard. But meanwhile, I experience life to the full and have my feet firmly on the ground; I go out, I discuss constantly, I go out for dinner, my sexual life is alright – you know what I am talking about.
Concerning the half-crippled tongue: Of course, PDT causes a wound at first. The wound heals, but the nerves and muscles in that area will never regenerate. In my case, the right side doesn’t function properly and thus sometimes hangs a bit.
If I would recommend PDT? Absolutely! As I said: This therapy should also be applied immediately, not only later when radiation and chemotherapy won’t work any more.”
Female patient from Huissen, the Netherlands, aged 58, was treated with PDT in June 2011
“I haven’t realized anything myself. But during a check in March 2011, my oral surgeon found a suspicious spot in my mouth and made a puncture.
I have been angry and sad, as it was the fifth time in five year that I have been diagnosed cancer in my mouth. Every time at another spot. The first time, in 2006, my dental hygienist discovered it. She showed the doctor, who made a puncture and thus detected cancer in my salivary gland. I underwent several surgeries in which positive nodes have been cut out of my throat as well. Due to the location of the tumours, radiation therapy was additionally applied.
My diagnose 2011: squamouscellcarcinoma. My oral surgeon said an operation was out of question, and we should go for Photodynamic Therapy. I had never heard of it before. My oral surgeon, who worked at the hospital in Arnhem, sent me to Antonie van Leeuwenhoek (AVL) hospital of the Netherlands Cancer Institute.
There, I was checked: endogenous ultrasonic to determine the exact location of the tumour, ultrasonic of the neck to spot positive lymph nodes, and MRT to spot metastases. Two or three weeks passed between diagnosis and treatment.
Thanks to anaesthesia, I haven’t sensed the treatment itself. Afterwards I did feel a pain, and thus had difficulties in eating. Back then, I wished the doctor had given me more assistance in pain treatment. My pain threshold is quite low, actually.
Today, I feel fine. My appetite is back to normal, and I have to be careful that I don’t eat all day. And I stopped smoking – it’s a great feeling. In the past, I smoked one packet of tobacco in three days, that’s 40 to 50 cigarettes.
I would surely choose Photodynamic Therapy again – considering a good pain treatment.”
Male patient from Santpoort, the Netherlands, aged 82, has been treated with PDT in November 2011
“All the time, I felt pain at my lip, and there was a spot changing colour. I guessed that this spelled trouble. Nevertheless, I have been really shocked when the suspicion of cancer arose. My family doctor sent me to Antonie van Leeuwenhoek (AVL) hospital. There, the doctor made a biopsy and indeed detected cancer.
At once, the doctor recommended Photodynamic Therapy because the tumour was located on the surface. I had never heard of this form of treatment before. Two weeks after the diagnosis, the treatment with PDT began.
As the treatment was carried out under local anaesthesia, I was conscious but did not feel the treatment itself. Shortly afterwards I felt pain and I had swellings. After one hour, I was back home – with a thick lip and no pain.
I would choose this form of therapy again. Sitting in the house and protect myself against sunlight for a while wasn’t too bad. The spot healed well, and you almost can’t see anything at all. I would recommend PDT to everyone.”
Female patient from Beverwijk, the Netherlands, aged 60, has been treated with PDT in October 2010
“I had pain and I saw some spots on the floor of the right side of my mouth. This was not the first time that I was diagnosed cancer in that area. In 2007, I got a commando resection and a neck gland dissection because of a tumor on the floor of my mouth, also on the right side. After the operation they also treated me with radiotherapy. This time, it was a squamous cell carcinoma.
I was already under medical supervision in the Netherlands Cancer Institute. The doctor immediately suggested Photodynamic Therapy. Afterthe first operation in 2007, PDT was the best option because I had already had radiotherapy (RT) – a second treatment with RT in this area would cause a lot of damage. I had never heard of PDT before, but the PDT-coordinator and the doctor gave me clear information. At first, the light sensitivity seemed a big obstacle to me, but after I received detailed information on PDT, my doubts where gone concerning this treatment.
Three to four weeks after the new diagnosis, the therapy began. After the treatment I had a lot of difficulties in eating, but that’s normal because there is a lot of swelling in the treated area. The nurses gave me the right medication for pain and swelling, and the very same day they sent me home. This is a normal procedure after PDT treatment.
I’m very pleased now. The recovery time went well and the wound healed very nicely. And I stopped smoking! And I feel alright.
I surely would recommend PDT. At first, this method seems problematic for the patient because of the light sensitivity, but during the two weeks after the injection with the drug who made you light-sensitive, you will say: it’s no problem to stay in the shade. Actually, it’s even better for everyone not to stay in the sun for too long. The instructions concerning light restriction you will get from the PDT-nurse are based on a schedule. And really, you don’t have to stay in darkness all day!”
Male patient from Hillegom, the Netherlands, aged 83, has been treated with PDT several times
“The first time I was diagnosed with cancer was in 2005. I had a big tumour in my mandible. They operated the tumour by following a commando resection and a neck gland dissection. After this operation I was treated with chemotherapy and radiation. In 2009, they found a new tumour in the same area, and again I underwent a large operation with several reconstructions.
Later on in 2009, they found another relapse on the left side of my mandible and in my cheek. That was the first time they treated the spot with Interstitial Photodynamic Therapy (IPDT), really deep into the tissue. And they treated my cheek with PDT. An ENT-specialist at the University Medical Center (VUMC) in Amsterdam had sent me to Antonie van Leeuwenhoek (AVL) hospitalat the Netherlands Cancer Institute because he knew Professor Tan – he is the PDT-specialist there.
In 2010 I got another IPDT on my parotid gland on the left side and later on that year another treatment with IPDT on the same area. There had never been a patient before who was treated more than twice with PDT. Because it hadn’t been necessary or even PDT hadn’t been an option anymore. But look at me: after two commando resections I still had the option for (I)PDT.
In 2011, I had a lot of pain in my left cheek bone. I’m quite sensitive for tumoursin the head and neck area – relapse after relapse. After all the operations, there was only one option left – and that was (I)PDT. So again, they treated me with IPDT.
The pain was always terrible, especially after the last treatment. But my old age is one of the negative factors in this matter. And during the last recovery period, I catchedthe flu with pneumonia.
But I think it’s still not my time. Every time, nurses and doctors were so friendly, and the check-ups are numerous. So missing a new spot is out of the question. That gives me and my wife a restful feeling. At this moment, I feel nothing in the last-treated area, but I have a hole in my cheek. The doctors were afraid that I would loose the sight of my left eye, but I can still see everything. So they did, again, a good job!
If I would recommend PDT? Sure, just look at my history!”